This time disability-related.
Disney self-insures and when I spoke with our head of corporate HR about my condition, he was very helpful and we discussed Disney's disability policy, which was to pay benefits equal to 90% of base compensation. The 10% differential would be something I could absorb without too much trouble, and although nobody likes to take a surprise pay cut, it was the least of my concerns given my health.
Unfortunately, that policy seems to have changed effective less than a month ago. Now, it seems, Disney only pays 50% of salary and leaves "the rest" up to state disability. Unfortunately, state disability defines "the rest" differently than Disney or I would. The net-net is state disability payments are capped and so I'm going to be taking a 40% pay cut for the next 10 months. That, combined with a few gems like insurance disallowing the tests yesterday, is going to great a much bigger financial burden.
I earn a good living, and we're not going to quality for any other assistance. Nor would I accept it, as those programs are needed by people who have less than we do. But it's still going to be very difficult to make ends meet without making drastic changes like taking our daughter out of her school, selling our house (in this economy?????), etc.
Oh well. One more kick in the groin when I need it the least. I need some good news for a change...I remain strong but there are just so many things that can go wrong before things start to crack a bit.
Saturday, January 24, 2009
Friday, January 23, 2009
CIGNA is an ulcerated boil on Satan's backside...
Just had the most irritating event today. Jill and I are flying to Arkansas by way of Memphis on Sunday AM to go to BB's clinic for a week. It will be funny to meet the guy after all this time.
CIGNA is the administrator of Disney's self-insured medical insurance plan. Because the tests that BB is running are expensive (MRI, PET scan, etc.) I wanted to make sure it was covered. CIGNA has known about this for WEEKS and did indeed certify them as in-network expenses. Until 4:45PM today, Friday, 15 minutes before closing and with no way to do anything about it.
Elizabeth from PinnacleCare emailed me to say that BB's assistant Bonnie (the very nice woman who sent the alarmist email) was informed that these tests would not be covered. So now I'm out tens of thousands of dollars. There is an appeal process, but even so, this is maddening to say the least.
I called my CIGNA contact and ripped her a new one (pardon my french). I've never been so angry in a phone message in my life -- the language was extremely colorful (more swearing than Tom Cruise's character in Tropic Thunder) and my voice was raised and I had a few real gems in there. By the end of the message I was screaming at the top of my voice and told her that I'm sure she wouldn't want to be my case manager and I said I was indifferent because I'm sure I'd get the same crappy level of service no matter who they put on my account.
I also warned them...if their MO is just to deny a claim a hundred times and wait for the person to go away, they are in for a rude awakening because I'm going to be louder, angrier, more full of choice vocabulary words, etc. if they don't do exactly what I demand of them.
The most upsetting thing is that this is taking energy that I need to fight my disease. I told my friend that I was so damn angry and screamed so much that I'm pretty sure I killed a few cancer cells just from pure rage.
In other news, a bought a couple of books off Amazon: 100 Questions and Answers about Myeloma, and 100 Questions and Andwers about Stem Cell Transplantation. These are depressing books but they are useful, even though by now I've learned about 80% of the material just from my own research. They will help me fill out my list of questions for BB.
Lastly, I got my itinerary for next week. Monday is EKG and X rays. Tuesday is a first consult with BB, a bone marrow biopsy (for which I'm demanding some kind of sedation), the gene array analysis, administrative stuff and a 2-hour PET Scan appointment at 7PM! Wednesday is pulmonary tests and other follow up. Thursday is an MRI and nutrition counseling. Friday is an hour consult with BB and then I'm free to enjoy all that Little Rock has to offer on Friday evening.
Jill and I do plan on having dinner with a lovely woman named Lois who went through BB's protocol a couple of years ago, and her husband. They've been very nice and have told me everything they can about the protocol, its side effects, etc.
Well, I've calmed down enough from my screaming fit voicemail mode to at least make an effort to get some rest. So off to bed I go.
CIGNA is the administrator of Disney's self-insured medical insurance plan. Because the tests that BB is running are expensive (MRI, PET scan, etc.) I wanted to make sure it was covered. CIGNA has known about this for WEEKS and did indeed certify them as in-network expenses. Until 4:45PM today, Friday, 15 minutes before closing and with no way to do anything about it.
Elizabeth from PinnacleCare emailed me to say that BB's assistant Bonnie (the very nice woman who sent the alarmist email) was informed that these tests would not be covered. So now I'm out tens of thousands of dollars. There is an appeal process, but even so, this is maddening to say the least.
I called my CIGNA contact and ripped her a new one (pardon my french). I've never been so angry in a phone message in my life -- the language was extremely colorful (more swearing than Tom Cruise's character in Tropic Thunder) and my voice was raised and I had a few real gems in there. By the end of the message I was screaming at the top of my voice and told her that I'm sure she wouldn't want to be my case manager and I said I was indifferent because I'm sure I'd get the same crappy level of service no matter who they put on my account.
I also warned them...if their MO is just to deny a claim a hundred times and wait for the person to go away, they are in for a rude awakening because I'm going to be louder, angrier, more full of choice vocabulary words, etc. if they don't do exactly what I demand of them.
The most upsetting thing is that this is taking energy that I need to fight my disease. I told my friend that I was so damn angry and screamed so much that I'm pretty sure I killed a few cancer cells just from pure rage.
In other news, a bought a couple of books off Amazon: 100 Questions and Answers about Myeloma, and 100 Questions and Andwers about Stem Cell Transplantation. These are depressing books but they are useful, even though by now I've learned about 80% of the material just from my own research. They will help me fill out my list of questions for BB.
Lastly, I got my itinerary for next week. Monday is EKG and X rays. Tuesday is a first consult with BB, a bone marrow biopsy (for which I'm demanding some kind of sedation), the gene array analysis, administrative stuff and a 2-hour PET Scan appointment at 7PM! Wednesday is pulmonary tests and other follow up. Thursday is an MRI and nutrition counseling. Friday is an hour consult with BB and then I'm free to enjoy all that Little Rock has to offer on Friday evening.
Jill and I do plan on having dinner with a lovely woman named Lois who went through BB's protocol a couple of years ago, and her husband. They've been very nice and have told me everything they can about the protocol, its side effects, etc.
Well, I've calmed down enough from my screaming fit voicemail mode to at least make an effort to get some rest. So off to bed I go.
Wednesday, January 21, 2009
BD's consult
After a snafu with BD's office, I managed to have a brief consult with him. It was quick, but it was very valuable. Here's what I learned:
1. He thinks that given my age, BB's protocol is a very good choice.
2. He is not terribly concerned with long-term leukemia as he believes the doses of cytoxin and etoposide are low and long-term leukemia is dose and schedule dependent.
3. He is not terribly concerned that the marrow will be unable to support normal blood counts as people coming out of BB's protocol have done well in this regard. Having said that, he did suggest I harvest enough stem cells for 3 transplants (and maybe I'll do 4 if possible).
4. He believes thalidomide is sufficiently different from Revlamid so as to require both agents in the BB "kitchen sink" approach.
5. He said the key to avoiding neuropathy with thalidomide is immediate dose reduction and taking a very proactive approach toward recognizing it and alerting the doctor(s) about it. Same deal with Velcade, although thalidomide neuropathy is much more serious (less painful but permanent)
6. He said that some poor risk GEP patterns have been linked to Chromosome 1 so BB and his folks are studying it, but just because I have some odd Chromosome 1 issues doesn't mean I am necessarily high risk. He noted that the lack of bad markers with 4;14, Chromosome 13 and 17b (a new one! thought I was done learning!) are all good factors, as is the fact that I have hyperdiploid.
7. He said that "we aren't quite there yet" even with all the novel agents in the pipeline, which again points me in the direction of the BB protocol.
So more or less a pretty strong statement of support for my choice of the BB method.
I'm gearing up. Cancer is gonna be sorry it knocked on my door -- I'm going to beat the crap out of it mercilessly!!!
1. He thinks that given my age, BB's protocol is a very good choice.
2. He is not terribly concerned with long-term leukemia as he believes the doses of cytoxin and etoposide are low and long-term leukemia is dose and schedule dependent.
3. He is not terribly concerned that the marrow will be unable to support normal blood counts as people coming out of BB's protocol have done well in this regard. Having said that, he did suggest I harvest enough stem cells for 3 transplants (and maybe I'll do 4 if possible).
4. He believes thalidomide is sufficiently different from Revlamid so as to require both agents in the BB "kitchen sink" approach.
5. He said the key to avoiding neuropathy with thalidomide is immediate dose reduction and taking a very proactive approach toward recognizing it and alerting the doctor(s) about it. Same deal with Velcade, although thalidomide neuropathy is much more serious (less painful but permanent)
6. He said that some poor risk GEP patterns have been linked to Chromosome 1 so BB and his folks are studying it, but just because I have some odd Chromosome 1 issues doesn't mean I am necessarily high risk. He noted that the lack of bad markers with 4;14, Chromosome 13 and 17b (a new one! thought I was done learning!) are all good factors, as is the fact that I have hyperdiploid.
7. He said that "we aren't quite there yet" even with all the novel agents in the pipeline, which again points me in the direction of the BB protocol.
So more or less a pretty strong statement of support for my choice of the BB method.
I'm gearing up. Cancer is gonna be sorry it knocked on my door -- I'm going to beat the crap out of it mercilessly!!!
Side effect run down, and some thanks
Not in that order.
I want to thank those who are following my blog and those who are taking the time to post comments and/or email me. I've been contacted by people from all over the world, some of whom have myeloma, some of whom have relatives with it, some of whom are dealing with other cancers or have relatives that are. Every one of these people, and of course our family and friends following this blog, is special to me -- they have been quick to share, encourage, and support and it does make a difference. Thank you all very much.
I have more good days than bad, but I'm trying to be pretty unvarnished here so if I complain now and then, please understand I'm just being true to what I'm feeling.
Now then.
The side-effect derby. I'm trying to get this all nailed so I can speak with BB about them individually. I'm also only including the side-effects I'm most concerned about (i.e. nausea and hairloss are not that big a deal, but going deaf is).
Velcade - peripheral neuropathy, seems to be dose-dependent and typically goes away
Thalidomide - very long-term and/or permanent peripheral neuropathy that takes years to heal if ever
Dex - cataracts, but that's not the end of the world
Cisplatin - hearing loss and kidney failure (wheeeeee!!!!)
Doxyrubicin - very bad cardio effects, particularly once cumulative dose rises above 550 mg/m2
Cytoxin - late-term acute leukemia (wheeeee--uuuugh I'm dead)
Etoposide - late-term acute leukemia
Revlimid - excess toejam and bellybutton lint
Okay, so I'm doing my best to keep the humor up. Revlimid has no such side effect that I'm aware of. 5% chance of peripheral neuropathy seems pretty manageable.
I will post more after my consult with BD, which I'm anticipating to be a barrel of laughs. : \
I want to thank those who are following my blog and those who are taking the time to post comments and/or email me. I've been contacted by people from all over the world, some of whom have myeloma, some of whom have relatives with it, some of whom are dealing with other cancers or have relatives that are. Every one of these people, and of course our family and friends following this blog, is special to me -- they have been quick to share, encourage, and support and it does make a difference. Thank you all very much.
I have more good days than bad, but I'm trying to be pretty unvarnished here so if I complain now and then, please understand I'm just being true to what I'm feeling.
Now then.
The side-effect derby. I'm trying to get this all nailed so I can speak with BB about them individually. I'm also only including the side-effects I'm most concerned about (i.e. nausea and hairloss are not that big a deal, but going deaf is).
Velcade - peripheral neuropathy, seems to be dose-dependent and typically goes away
Thalidomide - very long-term and/or permanent peripheral neuropathy that takes years to heal if ever
Dex - cataracts, but that's not the end of the world
Cisplatin - hearing loss and kidney failure (wheeeeee!!!!)
Doxyrubicin - very bad cardio effects, particularly once cumulative dose rises above 550 mg/m2
Cytoxin - late-term acute leukemia (wheeeee--uuuugh I'm dead)
Etoposide - late-term acute leukemia
Revlimid - excess toejam and bellybutton lint
Okay, so I'm doing my best to keep the humor up. Revlimid has no such side effect that I'm aware of. 5% chance of peripheral neuropathy seems pretty manageable.
I will post more after my consult with BD, which I'm anticipating to be a barrel of laughs. : \
Tuesday, January 20, 2009
The blues...
Not feeling that great today. I bade farewell to the office today and that was another example of reality setting in. I've been reading about side-effects this afternoon and there is so much poison I'm going to be putting in my body and so much that could go wrong that it's almost overwhelming. Obviously, I realize not everybody gets every side effect and all that...but the reality is, it's all out there and it's scary.
One thing I am going to be sure to question BB about is why he uses Thalidomide in induction and consolidation but Revlimid in maintenance. Revlimid is more effective than Thalidomide, and has much fewer side effects (peripheral neuropathy is a side-effect in about 80% of Thalidomide users but only about 5.4% in Revlimid users). Why not use Revlimid the whole time? It could be that it's distinct enough from Revlimid that it forms another part of the kitchen sink regimen, but if that's the case, does it still need to be used in both induction (two cycles) AND consolidation (two cycles?) -- that almost guarantees long-term neuropathy (in fact, SH, upon seeing the protocol, more or less guaranteed as much, between the Thalidomide and Velcade). Velcade's neuropathy can usually be dialed back with dose control -- Thalidomide doesn't have that characteristic. The other reason to stick with it, posited by Dr. RC, could be that BB was building a statistical model and was reluctant to switch protocols midstream while he was getting data.
I'm going to push him hard on the notion of using Revlimid throughout induction, consolidation and maintenance and see what he says. Certainly SF would probably agree with that protocol.
I have dinner with some people from work soon, so I'm going to try not to have this all hanging over me. It's hard.
One thing I am going to be sure to question BB about is why he uses Thalidomide in induction and consolidation but Revlimid in maintenance. Revlimid is more effective than Thalidomide, and has much fewer side effects (peripheral neuropathy is a side-effect in about 80% of Thalidomide users but only about 5.4% in Revlimid users). Why not use Revlimid the whole time? It could be that it's distinct enough from Revlimid that it forms another part of the kitchen sink regimen, but if that's the case, does it still need to be used in both induction (two cycles) AND consolidation (two cycles?) -- that almost guarantees long-term neuropathy (in fact, SH, upon seeing the protocol, more or less guaranteed as much, between the Thalidomide and Velcade). Velcade's neuropathy can usually be dialed back with dose control -- Thalidomide doesn't have that characteristic. The other reason to stick with it, posited by Dr. RC, could be that BB was building a statistical model and was reluctant to switch protocols midstream while he was getting data.
I'm going to push him hard on the notion of using Revlimid throughout induction, consolidation and maintenance and see what he says. Certainly SF would probably agree with that protocol.
I have dinner with some people from work soon, so I'm going to try not to have this all hanging over me. It's hard.
Quick update
Not too much of substance here but I'm overdue for a brief update.
I'm working out my long list of questions for BB, which should inform my final "decision tree" on what I'm going to have done and where. I was copied on a note from SF to SH talking about my situation, how treatment is needed relatively quickly, and how we've discussed BB's protocol as well as a more traditional protocol without the PACE drugs. It wasn't alarmist, but the implication was clear: the PACE protocol is extremely aggressive and has a host of terrible side effects. I believe both doctors will ultimately support whatever I want to do, but I think they know that PACE is awful and would probably be happier if I went with the more standard treatment.
I spoke with a few more senior people at work to let them know, and today I go in for my last day in a long while to tell the people that work for me (I've told a few of the more senior ones but most of them don't know). In addition to the Disney Channel exec I wrote about last time, another senior person I spoke with knows SF well (his wife went through a transplant for leukemia a few years ago) and had wonderful things to say about him. I have a lot of confidence in him, and yet I'm still torn between doing this here versus at BB's shop. This is one of the things I have to bottom out.
I have my consult with BD tomorrow, and I'll ask him again about secondary marrow impacts of the PACE drugs and the tandem transplant protocol in general. Then my research will be done, unless I can get a phone consult with SJ, who I was scheduled to see on Feb 23rd, but that's too long to wait, I think.
I've been feeling pretty good but the ribs are very sore these days. Some days I need no pain medication, most days I can get by on one or two advil, but lately it's been at least four advil and there have been a couple of Vicodin days. I find, also, that as the day of treatment draws closer, dread is starting to set in. The full BB protocol has four courses of VTD-PACE plus the two transplants. That means six multi-day periods of intense nausea, six periods of neutropenia, etc. I try not to lose out to fear, but it is difficult...and as it gets closer, I'll wrestle with it more intensely.
Meanwhile, I'm taking six capsules of liver.52 herbal formula per day and 8 capsules of milk thistle, and I'm off Lipitor for more than a week now. I'll be interested to see the liver enzyme numbers from my upcoming tests if nothing else.
I'm working out my long list of questions for BB, which should inform my final "decision tree" on what I'm going to have done and where. I was copied on a note from SF to SH talking about my situation, how treatment is needed relatively quickly, and how we've discussed BB's protocol as well as a more traditional protocol without the PACE drugs. It wasn't alarmist, but the implication was clear: the PACE protocol is extremely aggressive and has a host of terrible side effects. I believe both doctors will ultimately support whatever I want to do, but I think they know that PACE is awful and would probably be happier if I went with the more standard treatment.
I spoke with a few more senior people at work to let them know, and today I go in for my last day in a long while to tell the people that work for me (I've told a few of the more senior ones but most of them don't know). In addition to the Disney Channel exec I wrote about last time, another senior person I spoke with knows SF well (his wife went through a transplant for leukemia a few years ago) and had wonderful things to say about him. I have a lot of confidence in him, and yet I'm still torn between doing this here versus at BB's shop. This is one of the things I have to bottom out.
I have my consult with BD tomorrow, and I'll ask him again about secondary marrow impacts of the PACE drugs and the tandem transplant protocol in general. Then my research will be done, unless I can get a phone consult with SJ, who I was scheduled to see on Feb 23rd, but that's too long to wait, I think.
I've been feeling pretty good but the ribs are very sore these days. Some days I need no pain medication, most days I can get by on one or two advil, but lately it's been at least four advil and there have been a couple of Vicodin days. I find, also, that as the day of treatment draws closer, dread is starting to set in. The full BB protocol has four courses of VTD-PACE plus the two transplants. That means six multi-day periods of intense nausea, six periods of neutropenia, etc. I try not to lose out to fear, but it is difficult...and as it gets closer, I'll wrestle with it more intensely.
Meanwhile, I'm taking six capsules of liver.52 herbal formula per day and 8 capsules of milk thistle, and I'm off Lipitor for more than a week now. I'll be interested to see the liver enzyme numbers from my upcoming tests if nothing else.
Friday, January 16, 2009
Two doctor consults, BB's overzealous assistant explains herself, and Hannah Montana
I spoke yesterday with Dr. BC, who treated my friend RH's father DH for myeloma and gave him an allogeneic transplant six or seven years ago. I had wanted to have this conversation for some time, mostly to find out why he went for the allogeneic option instead of the safer autologous option.
I had mentioned in a previous entry that DH approached his myeloma differently than I. I have been researching aggressively, looking at all my options, learning everything I can about the disease, etc. DH basically said "I trust my doctors" and left it up to them and didn't really ask any questions. For example, he didn't know the treatment related mortality associated with allogeneic transplants, even though he had one performed on him. I appreciate that he was very "zen" about things and didn't stress about it, but it's a very different approach.
So it turns out DH, consistent with this approach, didn't even know what he had. He didn't have myeloma, but rather something called a myelodysplastic syndrome which is a precursor to leukemia and for which autologous transplants don't work. Hence the allogeneic transplant.
With that question now resolved, I went into my "eight minute consult" routine, which consists of asking if I'm crazy to pursue BB's protocol, what people were concerned with about it, the chance of long-term acute leukemia from the cytoxan and etoposide (the C and E of VTD-PACE that is the induction protocol for BB), and the chance of what I've taken to calling "mangling the marrow" from the whole BB protocol such that in the future, I might not qualify for new novel agents.
Dr. DC, who knows Dr. SF and Dr.KA, is a "single transplant guy" who falls into the mainline of Vel / Rev / Dex plus one autologous transplant. His problem with BB's protocol is that the data hasn't been replicated elsewhere, and he might be choosing people that benefit from his protocol (not the first time I've heard this allegation). I told him, as I have written here, that frankly I can understand the clinical validity of that concern but as an individual, so long as he chooses me to prove his protocol works, I don't care one bit about selection bias. DC agreed with this logic.
He thought the acute leukemia and marrow mangling were things "he would be concerned about" but that no real data exists and just like one would want a comparison of BB's protocol against other protocols on same patient group to eliminate selection bias, one would want comparison of secondary marrow problems on or off BB's protocol, but no such data exists. I will have 1-2 more brief consults (BD next week, and SJ if I can get him before Feb 23 since that is now too late) plus BB's visit to try to bottom these things out.
I also spoke yesterday with a holistic medicine person suggested by PinnacleCare. There's a fine line between legitimate complementary therapy (what kind of food should I be eating to help me get through chemotherapy, etc., are there any normal supplements that work like more Vitamin D, etc.) and "weirdology" like I experienced with that flaky Canadian outfit. This person was an actual doctor, unlike the Canadian folks. At any rate, I got as far as mentioning lipitor and getting the "it causes cancer, stop taking it, don't believe me look it up" before I tuned the guy out. I may talk with one more of them.
In the meantime, I'm going to experiment for a couple of weeks with a product called liv.52 that my friend Geoff recommended -- it's an herbal formula that has a bunch of stuff that helps the liver. I'll also be taking milk thistle extract, which is the same type of deal (and is actually in clinical trials to compare liver response to chemo on this vs. placebo). I'm gonna do this for a couple of weeks, and then I'll have blood drawn at BB's shop. We'll see what the liver numbers do. I'm not going to continue this stuff once I begin real treatment, but if it brings down the liver enzymes a bit, then great.
I had Elizabeth from PinnacleCare call BB's assistant to find out what she was thinking when she sent that alarmist email. Long story short, there is a question about the Chromosome 1 abnormality that might not be the greatest, but the real problem is that she somehow missed the fact that I've been to two other doctors since the first labs she saw. My calcium hasn't budged from the first test, I have been monitoring the progress of the disease, etc. For some reason, she thought I was being lackadaisical about it and she wanted to create urgency. Unfortunately, the words High Risk when used in connection with BB's protocol have a very specific meaning which is terrifying to consider. She should have chosen her words more carefully. Not crazy about her, I gotta say. But I did like BB, both because of what he said and the fact that he called me at close to midnight his time, which was pretty remarkable for a doctor I've never even met yet. His assistant did explain that BB would take me on personally as a patient, which is great.
Lastly, what does Hannah Montana have to do with all this? Well I've been telling some of the folks with whom I work, so they won't wonder why I'm out of the office for the next nine months. I spoke the President of the Disney Channel, and his creative partner there has been fighting cancer of a different type. This executive, who more or less created High School Musical, Hannah Montana, the Jonas Brothers, etc. called me and we spoke and compared notes for about 45 minutes. Turns out his father-in-law used to be a very senior guy at the City of Hope, and Dr. SF has helped this guy out a lot even though SF doesn't work on the type of cancer that this guy has. So another vote of confidence from somebody who has known SF for a long time.
I feel very good about the doctors that are caring for me.
I had mentioned in a previous entry that DH approached his myeloma differently than I. I have been researching aggressively, looking at all my options, learning everything I can about the disease, etc. DH basically said "I trust my doctors" and left it up to them and didn't really ask any questions. For example, he didn't know the treatment related mortality associated with allogeneic transplants, even though he had one performed on him. I appreciate that he was very "zen" about things and didn't stress about it, but it's a very different approach.
So it turns out DH, consistent with this approach, didn't even know what he had. He didn't have myeloma, but rather something called a myelodysplastic syndrome which is a precursor to leukemia and for which autologous transplants don't work. Hence the allogeneic transplant.
With that question now resolved, I went into my "eight minute consult" routine, which consists of asking if I'm crazy to pursue BB's protocol, what people were concerned with about it, the chance of long-term acute leukemia from the cytoxan and etoposide (the C and E of VTD-PACE that is the induction protocol for BB), and the chance of what I've taken to calling "mangling the marrow" from the whole BB protocol such that in the future, I might not qualify for new novel agents.
Dr. DC, who knows Dr. SF and Dr.KA, is a "single transplant guy" who falls into the mainline of Vel / Rev / Dex plus one autologous transplant. His problem with BB's protocol is that the data hasn't been replicated elsewhere, and he might be choosing people that benefit from his protocol (not the first time I've heard this allegation). I told him, as I have written here, that frankly I can understand the clinical validity of that concern but as an individual, so long as he chooses me to prove his protocol works, I don't care one bit about selection bias. DC agreed with this logic.
He thought the acute leukemia and marrow mangling were things "he would be concerned about" but that no real data exists and just like one would want a comparison of BB's protocol against other protocols on same patient group to eliminate selection bias, one would want comparison of secondary marrow problems on or off BB's protocol, but no such data exists. I will have 1-2 more brief consults (BD next week, and SJ if I can get him before Feb 23 since that is now too late) plus BB's visit to try to bottom these things out.
I also spoke yesterday with a holistic medicine person suggested by PinnacleCare. There's a fine line between legitimate complementary therapy (what kind of food should I be eating to help me get through chemotherapy, etc., are there any normal supplements that work like more Vitamin D, etc.) and "weirdology" like I experienced with that flaky Canadian outfit. This person was an actual doctor, unlike the Canadian folks. At any rate, I got as far as mentioning lipitor and getting the "it causes cancer, stop taking it, don't believe me look it up" before I tuned the guy out. I may talk with one more of them.
In the meantime, I'm going to experiment for a couple of weeks with a product called liv.52 that my friend Geoff recommended -- it's an herbal formula that has a bunch of stuff that helps the liver. I'll also be taking milk thistle extract, which is the same type of deal (and is actually in clinical trials to compare liver response to chemo on this vs. placebo). I'm gonna do this for a couple of weeks, and then I'll have blood drawn at BB's shop. We'll see what the liver numbers do. I'm not going to continue this stuff once I begin real treatment, but if it brings down the liver enzymes a bit, then great.
I had Elizabeth from PinnacleCare call BB's assistant to find out what she was thinking when she sent that alarmist email. Long story short, there is a question about the Chromosome 1 abnormality that might not be the greatest, but the real problem is that she somehow missed the fact that I've been to two other doctors since the first labs she saw. My calcium hasn't budged from the first test, I have been monitoring the progress of the disease, etc. For some reason, she thought I was being lackadaisical about it and she wanted to create urgency. Unfortunately, the words High Risk when used in connection with BB's protocol have a very specific meaning which is terrifying to consider. She should have chosen her words more carefully. Not crazy about her, I gotta say. But I did like BB, both because of what he said and the fact that he called me at close to midnight his time, which was pretty remarkable for a doctor I've never even met yet. His assistant did explain that BB would take me on personally as a patient, which is great.
Lastly, what does Hannah Montana have to do with all this? Well I've been telling some of the folks with whom I work, so they won't wonder why I'm out of the office for the next nine months. I spoke the President of the Disney Channel, and his creative partner there has been fighting cancer of a different type. This executive, who more or less created High School Musical, Hannah Montana, the Jonas Brothers, etc. called me and we spoke and compared notes for about 45 minutes. Turns out his father-in-law used to be a very senior guy at the City of Hope, and Dr. SF has helped this guy out a lot even though SF doesn't work on the type of cancer that this guy has. So another vote of confidence from somebody who has known SF for a long time.
I feel very good about the doctors that are caring for me.
Thursday, January 15, 2009
Thoughts on last night's scare, and a nice call with SF
I like BB. It was great that he called, and he did put me at ease.
I also received a call from SF, whom I had told about the dire email I received from BB's clinician. He was concerned, as I am, about the tone of the email which was quite alarmist. Here's what it said.
Pretty scary stuff, and if you look at BB's presentation and how he draws the distinction between the effectiveness of his protocol on low risk vs. high risk gene array patients, it's very dire. Dismal, to use his words. So dismal as to suggest there's no point in pursuing that therapy since it will be a dead end and I'm better off doing a single transplant with fewer drugs since that will take less time, be less toxic, and both that and the more toxic route would both leave me with no hope of cure and a 3-4 year lifespan absent developments of new drugs.
I also received a call from SF, whom I had told about the dire email I received from BB's clinician. He was concerned, as I am, about the tone of the email which was quite alarmist. Here's what it said.
Elizabeth, by way of introduction, I am Dr. BB’s assistant for almost 20 years and work with him clinically and in research. He has asked me to contact you so we can answer your questions and let you and Mr. Van Dyk know what to expect and why.Translation: blah blah blah chromosome 1 blah blah blah high risk blah blah blah old genetic markers that say he is low risk are ones we don't use blah blah blah can't wait two weeks blah blah blah kidney failure blah blah blah calcium almost 10 blah blah blah grim reaper holding for you on line 2, Mr. van Dyk.
I have read with interest the scenario that has been outlined for you and ask that you call me as soon as you can. Mr. Van Dyk has a high risk gene array based on the changes noted in chromosome 1. As noted in the dictation from City of Hope, he does not have deletion 13, an abnormality that we have not used for more than 2 years to make treatment decisions. In large multivariate analysis, it didn’t hold up as a risk factor. Mr. Van Dyk needs treatment very soon. He cannot wait two weeks.
I am very, very concerned, as is Dr. BB, that he has a marrow with 80% plasma cells noted 6 weeks ago. The protein levels could mean the beginning of a loss of kidney function and other very serious problems if not treated. His calcium marker is almost 10.
Pretty scary stuff, and if you look at BB's presentation and how he draws the distinction between the effectiveness of his protocol on low risk vs. high risk gene array patients, it's very dire. Dismal, to use his words. So dismal as to suggest there's no point in pursuing that therapy since it will be a dead end and I'm better off doing a single transplant with fewer drugs since that will take less time, be less toxic, and both that and the more toxic route would both leave me with no hope of cure and a 3-4 year lifespan absent developments of new drugs.
When BB called, he did say that chromosome 1 marker is troublesome, but not definitive, and that we needed a gene array analysis done. He thought it would be fine to wait until my already scheduled appointment. I am quite sure that he will want to treat me immediately, but that's a far cry from "Death's icy hand is two inches from your shoulder, run run run!!!!!"
I am a little perturbed by the tone of the email. Also, while it is true that my calcium is almost 10, other doctors have seen this and repeatedly stated that my calcium is normal. "GOOD GOD, YOUR BLOOD PRESSURE IS 124 OVER 82!!!!!!!"
Anyhow, SF called (I had forwarded the email to him) and basically said he was a bit "perturbed" (he used more direct language) about the tone of the email. I told him that it was one thing if BB's folks had more data than anybody else, and could run more detailed statistical analyses, and on the basis of that were able to glean more from a chromosome 1 abnormality than SF or others, but the calcium marker is something that SF, KA, SH, and even gloomy-ass ML should be able to review just fine.
SF had a couple of very insightful things:
1. The gene array analysis is a useful thing, however while there may be a lot of data at BB's shop, we need to consider that a lot of that data could be without the benefit of velcade, etc. and they really need to get my blood sample and run it against people that are very similar and who were on the treatment program I'm likely to pursue. Looking at the one chromosome situation in isolation can't be definitive.
2. The calcium marker didn't look alarmist to him. "What do these people know that I don't know, or KA doesn't know?" He jokingly said "What kinda operation are these people running down there." :) He's friends with BB for nearly 30 years now, and I know he respects him. So this was directed against an overzealous assistant, more than BB (who himself told me to relax and let's see what the gene array tells us).
3. I explained KA's concern about mangling marrow and making it difficult to use novel drugs in the future since I won't have regular blood counts. He (SF) said he wouldn't be concerned as "we've gotten very good at managing these meds and that shouldn't be a factor." He also said he wasn't terribly concerned about the long-term acute leukemia possibility.
So, the net-net: I have chromosome 1 abnormalities and I cannot rest easy knowing I'm in the low-risk group for BB's protocol, which is a bummer. But let's not start taking measurements for the casket just yet.
That was four hours of terror last night, but at the end of it, I slept well. In the words of the flustered CIA bureaucrat at the end of Burn After Reading (a funny movie, by the way): "What did we learn here? Damned if I know. I guess we learned never to do it again."
More news as it develops.
Wednesday, January 14, 2009
Okay, spoke with BB...
I like this guy -- he called me after his dinner ended at 11PM his time. It seems his assistant / clinician MAY have overstated things.
My chromosome 1 abnormality is not a good sign. But it's not definitive. Their proprietary gene array analysis will need to be done to determine what is going on.
But he did say that he thought my regularly scheduled appointment on the 25th would be soon enough. In other words, I have next week to spend with family and friends.
So I am back, albeit somewhat shaken by the process, to believing that I will be in the low-risk group. I have too many otherwise positive markers. So until they prove to me that my gene array analysis definitively puts me in the high risk category, I'll go on believing I am low risk.
If I *am* deemed high risk, and his protocol can't help me, then I will go with KA's suggested regimen (which is consistent with what City of Hope and Dr. SH would do) which would be Velcade, Revlimid and Dex during induction, followed by a single autologous transplant, followed by maintenance on Revlimid. Followed by finger crossing to make sure more drugs come out.
What a day...ugh.
Now drinking:
Had a 2002 Quilceda Creek (100 points in Parker). Delicious. Moving on to a 2000 Chateau Pavie (100 points in Parker as well). It's a two bottle evening. The liver can wait!
The worst thing about this, by the way...
...is that now people need to scroll down to see that sweet photo of Jack Elam. :)
Bad news...
Probably very bad news, actually.
I received word from BB's office that based on my chromosome 1 abnormality, which most people do not associate with high risk, that I *am* high risk. They use a more robust analysis of genes and chromosomes than elsewhere. The historical markers of risk -- chromosome 13 deletion and 4;14 translocation, neither of which I have -- haven't been used in more than 2 years in BB's offices because they were proved in multivariate analysis to not be useful factors. In other words, because they have enough data at BB's shop (since he sees more people than anybody in the world) they can run more complicated statistical analyses of what types of this cancer are worse than others.
They believe I am high risk.
What does this mean? Well, a couple of things.
1. I will not benefit from their treatment. In contrast to low-risk MM, where people who go through BB's protocol have a 50-60% chance of being cured and 85% are still alive 4 years after diagnosis, with HIGH-risk MM, only 25% are still alive after 4 years...and there is no "plateau" that suggests a cure. So 25% are alive after 4 years, 20% after 5, etc. with nobody beating it. In BB's own words in his presentation "The Myth of Incurability" (which evidently only applies to low-risk cases), he writes "The outcome is still dismal for high-risk MM."
2. I can't even wait two weeks to be seen. I think I will have to go next week.
The one thing I am wondering is all they are going off is my chromosome writeup from City of Hope, which noted that I have a chromosome 1 abnormality which is present in about 15% of people. If that was the ONLY thing that separated low- from high-risk, then they wouldn't need to look at the rest of the genes.
I'm hoping that's the case. But for the first time since my initial diagnosis, I'm scared to death.
BB's clinician is at dinner now but should be calling soon. I may post another update tonight.
Today had been a good day -- I was upbeat, I was joking with my brothers this morning, and I received a very nice note from a person whose husband is battling a brain tumor, who said this blog was uplifting. I'm glad it can be...I hope it remains that way consistently.
Right now, there are no guarantees.
Tuesday, January 13, 2009
Quick update on a few things...
Well, we got started on the will and trust for the kids today. Overdue, and not exactly uplifting, but I felt very responsible when we finished our meeting with the attorney. If only I'd gotten that damn long-term disability I'd feel like the most responsible guy in town.
I spoke with Dr. PZ, my primary physician who got this whole mess started when he was smart enough to chase down the meaning of that protein back in early November. He said that he had looked at protein levels in the past, and they had never been elevated. So there goes the theory that the MM raised my cholesterol. On the other hand, he was fully supportive of stopping Lipitor, so I'm now off that. He was also supportive of reducing alcohol consumption (very few doctors actually suggest you drink MORE...
...other than perhaps Jack Elam's character in Cannonball Run). Hopefully I won't meet anybody at BB's clinic that resembles him. I scoured the Internet for a bigger picture that showed off his stethoscope but couldn't find anything. You'll have to use your imagination but I assure you, he's wearing a medical coat.
Anyhow, so no Lipitor, reduced alcohol and I am considering taking milk thistle extract in order to help the liver get into tip-top shape before and during chemo. Even if I discontinue it during the chemo, I will probably use it for the next month or so to help the liver get strong. PinnacleCare is looking into the one clinical trial I found out (comparing two groups in treatment for leukemia to see which group -- the one on the extract or the one on a placebo -- better manages liver damage from the chemo).
I started telling folks at work today, and they were very supportive. I'm about to click "send" on a letter to the CEO. I'm working on a lot of projects and I'm gonna be out of commission for several months -- I don't want him to think I just vanished without a trace!
I spoke with Dr. PZ, my primary physician who got this whole mess started when he was smart enough to chase down the meaning of that protein back in early November. He said that he had looked at protein levels in the past, and they had never been elevated. So there goes the theory that the MM raised my cholesterol. On the other hand, he was fully supportive of stopping Lipitor, so I'm now off that. He was also supportive of reducing alcohol consumption (very few doctors actually suggest you drink MORE...
...other than perhaps Jack Elam's character in Cannonball Run). Hopefully I won't meet anybody at BB's clinic that resembles him. I scoured the Internet for a bigger picture that showed off his stethoscope but couldn't find anything. You'll have to use your imagination but I assure you, he's wearing a medical coat.
Anyhow, so no Lipitor, reduced alcohol and I am considering taking milk thistle extract in order to help the liver get into tip-top shape before and during chemo. Even if I discontinue it during the chemo, I will probably use it for the next month or so to help the liver get strong. PinnacleCare is looking into the one clinical trial I found out (comparing two groups in treatment for leukemia to see which group -- the one on the extract or the one on a placebo -- better manages liver damage from the chemo).
I started telling folks at work today, and they were very supportive. I'm about to click "send" on a letter to the CEO. I'm working on a lot of projects and I'm gonna be out of commission for several months -- I don't want him to think I just vanished without a trace!
Monday, January 12, 2009
Consult with Dr. KA, and some pleasant surprises...
Well, not in that order, exactly.
Pleasant Surprise #1: I got my Vicodin prescription (750mg pills), but rather than take one of those, I took one 500mg pill that Jill had left over from her bout with Meningitis last summer (waste not want not when it comes to narcotics!). I work up the next morning, long after the Vicodin would have worn off, and my pain was remarkably better. I still felt it if I exerted myself, but I was able to manage without even any Advil, much less 750mg of Vicodin. Since last Thursday, I've felt a little pain in my back (though today it feels fine) and intermittent rib pain when I exert myself, but it's nowhere NEAR the degree of discomfort that I had last week. I'm doing my best not to lift anything (tough, as both the kids want me to play with them) and golf (even running) is out of the question, but otherwise I can get around more or less.
Since I was feeling better, I went to Las Vegas this last weekend for my annual trip with a bunch of former Disney executives. This was a calculated risk...my buddies and I have a saying: "go to Vegas healthy, come back sick...go to Vegas sick, come back dead." Obviously my immune system isn't firing on all cylinders, but I also took it a little easier than usual and I feel fine.
This is always a good time and this trip proved no different. On the long list of people that deserve Cancer more than me, let me add Jake Delhomme, the QB for the Tennessee Titans. That terrible performance cost me a couple of hundred bucks!!!! (please note: I would NEVER wish cancer on anybody -- even Jake -- so please understand I'm kidding...it's just that I haven't cracked a joke on this blog in quite some time).
Pleasant Surprise #2: I awoke this morning to an email from BK, a very prominent executive in the videogame business that I've known for some time and who earlier on called the director of the City of Hope, whom he knows well, on my behalf. BK has been fantastic and I owe him my thanks. His email this morning introduced me to a friend of his, CN, who he told me to call.
CN is an executive in Detroit (not car associated) whose wife, I learned, contracted MM 13 years ago. I spoke with him for about 40 minutes and he was immensely helpful. He approached the disease in the exact way I did. He researched everything he could, spoke with all the top doctors, joined the board of the IMF (the International Myeloma Foundation, which is the other group, along with Kathy Giusti's MMRF, that works to cure this disease), goes to hematology conferences, etc. When we were speaking, I anticipated what his comments and questions would be, and he anticipated mine -- it was two like minds talking about a problem they were both tackling and it helped a lot.
He knows every one of the top doctors and as he went through the list I was almost laughing because they are precisely the ones I have spoken with. He explained the biases / philosophies of each doctor and they are consistent with what I've observed. He told me he was surprised I was able to speak with KA at all, much less have KA take a deep interest in my case, which was great since I was to speak with KA shortly.
Perhaps most importantly, he told me his wife went through Total Therapy 1 with BB and has been in complete remission for eight years. He thinks BB is a very quirky guy (a 65 year old who rides a motorcycle to the office and does rounds in black leather pants), but an excellent doctor. I have no problem with quirky so long as I'm cured. He said that long-term leukemia isn't an issue with BB's agents because the real issue for leukemia is prolonged use of these chemicals. BB's protocol involves no more than 12 days of these drugs (and possibly as few as 4), as opposed to a regiment that could have them on them for weeks or even months. He mentioned BB has gotten very good at assessing which agents need to be used.
I then spoke with Dr. KA for about an hour. KA is a terrific doctor and was great to speak with. The highlights:
* He concurs with the diagnosis. He is heartened by the fact that my Beta 2 Microglobulin is not high, my C Reactive Protein is normal, there is no bone disease, there is no renal failure, etc. He said I have hyperdiploid myeloma which has a better outcome than most myeloma. The absence of negative chromosomal factors like Chromosome 13 deletion, 4;14 translocation, etc. are all positives as well. Nonetheless, I still have MM, and it is progressing rapidly enough where treatment needs to happen soon.
* The fact that I have a second unrelated clone (meaning two separate cells went haywire and started duplicating) is "not as uncommon as people think...it probably happens in 30 percent of cases."
* His recommended treatment is induction with novel agents (Velcade, Revlimid, Dex) followed by high dose melphalan and autologous transplant.
* He is in favor of maintenance therapy (specifically Revlimid)
* He thinks the VRD regimen is so effective that, when combined with my generally favorable prognostic factors, that "there is a 99% chance you will be in complete remission after induction therapy." I like those odds -- I'm 100% certain of that much myself, actually.
* He thinks the TT3 protocol that BB uses (and he has known BB for 30 years, and also SF for 30 years which is great) "would not be crazy to pursue" although it's not something that Dana Farber would "ever do." The reason being that the new drugs are so effective it might be possible to achieve the same results from less drugs, or from a single transplant rather than a double transplant. [Unfortunately, in my opinion, the same logic that says "you're in remission after one transplant, you don't need another" would also say "you're in remission after induction, you don't need a transplant." BB's protocol really is everything and the kitchen sink. The issue seems to be that one might be able to be cured just by using the faucets without whacking you over the head with a large enamel basin]
* On the topic of kitchen sink, I asked about the chance for long-term leukemia in BB's protocol. He had heard of it but thought the odds were low (I failed to ask how low), but he seemed to think that there could be secondary marrow problems that might result in low blood counts that might make it difficult for me to be put into trials for new drugs that are coming out.
* New drugs coming out include something called heat shock proteins (harvested from sea creatures at the ocean floor, evidently) and HDAC inhibitors. He thought a combination of HDAC inhibitors and heat shock proteins with VRD might very well be a cocktail that could achieve remission for a "very, very long time." He noted that the quoted median survival of 3-4 years which has recently increased to 7-8 years does NOT include the benefit of Relvlimid or Velcade, so I could be looking already at 10+ years of median survival without even getting the transplant. Take THAT, Dr. ML!!!! (he was the "don't plan on living to Parker's wedding" guy).
* The same French doctors that did a study proving that early transplant after induction is better than late transplant are now repeating that trial with VRD. Two arms of the study will go on VRD and have their stem cells harvested, one group will get the transplant immediately, and one will wait until recurrence. They can then see if early transplant still makes a difference. It would be very interesting to see the results of this -- but they won't be useful for another 8 years or so.
* He thinks that Lipitor did not cause the cancer, but he does note that Myeloma can confuse cholesterol readings. It may be possible that when my cholesterol went from its fairly predictable 220-230 about three years ago up to almost 300, this was the MM starting up. I'm going to check with PZ to see what, if anything, the protein levels were back then. He had mentioned that there hadn't been high protein in my bloodwork before but it's possible he didn't run all the same labs. In any case, when I go in for high-dose chemo, I will have to be off all meds including Lipitor (which irritates the liver). And no wine. I want my liver as strong as possible to deal with the high-dose chemo. So once I start treatment, two glasses a week is it for me. : (
* He thinks there should NOT being any long-term peripheral neuropathy as long as I am not on Thalidomide. So one big question for BB is why use Thalidomide if Revlimid is more efficacious and not likely to cause neuropathy? Velcade still will, but it is dose and schedule dependent and there are things that can be done to modulate those. "We've gotten very good at that," he says. The other big question for BB is the likelihood of leukemia and secondary marrow problems. KA says BB will tell me it's not a problem at all, "but I am whispering that it might be." I wish there was less uncertainty about these things! The last thing I want to do is get into remission for 7 years with BB, have it recur, and then have mangled my marrow such that I can't tolerate or benefit from HDAC inhibitors, Carfilzomib (next-gen Velcade), etc.
* He said there was no real difference between in-patient vs. out-patient. He said that "old timers" like him and Dana Farber would be inclined for in-patient. I think more and more that this depends on the quality of the hospital -- I want to make sure it's new, and clean, and has a good means of confining germs. And that the rooms aren't someplace that I'll be miserable while I'm there, of course (beyond the inevitable misery of the disease and treatment itself).
* He thought I shouldn't wait very long for treatment, so I'm reluctantly moving up the start date from March 2 to February 16th, I think. He said the marrow involvement is significant and the report says that cells have formed in "sheets" and "clusters" and that makes him concerned. They are dividing rapidly. Stupid little buggers -- I'm gonna poison them good!!
So that was that conversation.
In other news, my brothers are being blood typed for an allogeneic transplant down the line (KA told me Kathy Giusti had one of these, but from an identical twin which is rare and which obviously makes it easier to tolerate). That's good news because it means Kathy may be cured and I want her healthy and around for a long time to help lead the fight against this disease.
I've worked things out with Disney where I *THINK* I will be able to be covered throughout my illness, provided I can work a bit from home now and then, which I should be able to do. So that takes care of the insurance concern. Afterwards, I will need to be disease free for five years before I'll be eligible for long-term disability...so let's hope this is the only kind of cancer I ever get! :)
I also learned that even if a place (like SH's shop) is not in my healthcare network, they will still pay 100% of costs, it's just a higher "deductible" on that. For in-network places, after the first $2500 of co-payments, 100% is paid. For out-of-network places, it takes $5000 before 100% is paid. Sadly, this is gonna cost me a lot more than $5000 so it doesn't really matter. We're looking at a $2500 penalty (and even that should be tax-deductible) for using SH versus an in-network provider...I can live with that.
Elsewhere on the expense front, I really think I want 24-hour private nursing while I am in-patient and neutropenic (meaning no immune system). That won't be cheap, but I want somebody making sure all my medications are being given, that doctors are consulting each other to watch for side effects and to make sure the right anti-nausea and other meds are being given, to make sure people wash their hands before they come in and out of the room (if I'm asleep, I can't be telling people to do this), etc. With luck, I'll only need this for maybe 20 days or so over the course of treatment. That's going to be a LOT of money, but if I can cure this, it will be worth it.
Okay...that's a big, big update for one day. I'll post more as I know it. The next consult I have will be on Jan 21st with BD. I'm trying to reschedule SJ earlier since Feb 23rd is probably too late (KA thought it might be pushing it to wait 6 weeks...we'll see what BD has to say). We'll also have more on the progression of the disease at the end of the month after I spend a week in Little Rock with BB and his people. KA thinks BB will say I need immediately treatment as well. So putting it off for another full month might be too much.
Feb 16 looks like the first really ugly day for me. But I'm ready. I will overcome this thing.
Cancer picked the wrong guy to mess with!
Pleasant Surprise #1: I got my Vicodin prescription (750mg pills), but rather than take one of those, I took one 500mg pill that Jill had left over from her bout with Meningitis last summer (waste not want not when it comes to narcotics!). I work up the next morning, long after the Vicodin would have worn off, and my pain was remarkably better. I still felt it if I exerted myself, but I was able to manage without even any Advil, much less 750mg of Vicodin. Since last Thursday, I've felt a little pain in my back (though today it feels fine) and intermittent rib pain when I exert myself, but it's nowhere NEAR the degree of discomfort that I had last week. I'm doing my best not to lift anything (tough, as both the kids want me to play with them) and golf (even running) is out of the question, but otherwise I can get around more or less.
Since I was feeling better, I went to Las Vegas this last weekend for my annual trip with a bunch of former Disney executives. This was a calculated risk...my buddies and I have a saying: "go to Vegas healthy, come back sick...go to Vegas sick, come back dead." Obviously my immune system isn't firing on all cylinders, but I also took it a little easier than usual and I feel fine.
This is always a good time and this trip proved no different. On the long list of people that deserve Cancer more than me, let me add Jake Delhomme, the QB for the Tennessee Titans. That terrible performance cost me a couple of hundred bucks!!!! (please note: I would NEVER wish cancer on anybody -- even Jake -- so please understand I'm kidding...it's just that I haven't cracked a joke on this blog in quite some time).
Pleasant Surprise #2: I awoke this morning to an email from BK, a very prominent executive in the videogame business that I've known for some time and who earlier on called the director of the City of Hope, whom he knows well, on my behalf. BK has been fantastic and I owe him my thanks. His email this morning introduced me to a friend of his, CN, who he told me to call.
CN is an executive in Detroit (not car associated) whose wife, I learned, contracted MM 13 years ago. I spoke with him for about 40 minutes and he was immensely helpful. He approached the disease in the exact way I did. He researched everything he could, spoke with all the top doctors, joined the board of the IMF (the International Myeloma Foundation, which is the other group, along with Kathy Giusti's MMRF, that works to cure this disease), goes to hematology conferences, etc. When we were speaking, I anticipated what his comments and questions would be, and he anticipated mine -- it was two like minds talking about a problem they were both tackling and it helped a lot.
He knows every one of the top doctors and as he went through the list I was almost laughing because they are precisely the ones I have spoken with. He explained the biases / philosophies of each doctor and they are consistent with what I've observed. He told me he was surprised I was able to speak with KA at all, much less have KA take a deep interest in my case, which was great since I was to speak with KA shortly.
Perhaps most importantly, he told me his wife went through Total Therapy 1 with BB and has been in complete remission for eight years. He thinks BB is a very quirky guy (a 65 year old who rides a motorcycle to the office and does rounds in black leather pants), but an excellent doctor. I have no problem with quirky so long as I'm cured. He said that long-term leukemia isn't an issue with BB's agents because the real issue for leukemia is prolonged use of these chemicals. BB's protocol involves no more than 12 days of these drugs (and possibly as few as 4), as opposed to a regiment that could have them on them for weeks or even months. He mentioned BB has gotten very good at assessing which agents need to be used.
I then spoke with Dr. KA for about an hour. KA is a terrific doctor and was great to speak with. The highlights:
* He concurs with the diagnosis. He is heartened by the fact that my Beta 2 Microglobulin is not high, my C Reactive Protein is normal, there is no bone disease, there is no renal failure, etc. He said I have hyperdiploid myeloma which has a better outcome than most myeloma. The absence of negative chromosomal factors like Chromosome 13 deletion, 4;14 translocation, etc. are all positives as well. Nonetheless, I still have MM, and it is progressing rapidly enough where treatment needs to happen soon.
* The fact that I have a second unrelated clone (meaning two separate cells went haywire and started duplicating) is "not as uncommon as people think...it probably happens in 30 percent of cases."
* His recommended treatment is induction with novel agents (Velcade, Revlimid, Dex) followed by high dose melphalan and autologous transplant.
* He is in favor of maintenance therapy (specifically Revlimid)
* He thinks the VRD regimen is so effective that, when combined with my generally favorable prognostic factors, that "there is a 99% chance you will be in complete remission after induction therapy." I like those odds -- I'm 100% certain of that much myself, actually.
* He thinks the TT3 protocol that BB uses (and he has known BB for 30 years, and also SF for 30 years which is great) "would not be crazy to pursue" although it's not something that Dana Farber would "ever do." The reason being that the new drugs are so effective it might be possible to achieve the same results from less drugs, or from a single transplant rather than a double transplant. [Unfortunately, in my opinion, the same logic that says "you're in remission after one transplant, you don't need another" would also say "you're in remission after induction, you don't need a transplant." BB's protocol really is everything and the kitchen sink. The issue seems to be that one might be able to be cured just by using the faucets without whacking you over the head with a large enamel basin]
* On the topic of kitchen sink, I asked about the chance for long-term leukemia in BB's protocol. He had heard of it but thought the odds were low (I failed to ask how low), but he seemed to think that there could be secondary marrow problems that might result in low blood counts that might make it difficult for me to be put into trials for new drugs that are coming out.
* New drugs coming out include something called heat shock proteins (harvested from sea creatures at the ocean floor, evidently) and HDAC inhibitors. He thought a combination of HDAC inhibitors and heat shock proteins with VRD might very well be a cocktail that could achieve remission for a "very, very long time." He noted that the quoted median survival of 3-4 years which has recently increased to 7-8 years does NOT include the benefit of Relvlimid or Velcade, so I could be looking already at 10+ years of median survival without even getting the transplant. Take THAT, Dr. ML!!!! (he was the "don't plan on living to Parker's wedding" guy).
* The same French doctors that did a study proving that early transplant after induction is better than late transplant are now repeating that trial with VRD. Two arms of the study will go on VRD and have their stem cells harvested, one group will get the transplant immediately, and one will wait until recurrence. They can then see if early transplant still makes a difference. It would be very interesting to see the results of this -- but they won't be useful for another 8 years or so.
* He thinks that Lipitor did not cause the cancer, but he does note that Myeloma can confuse cholesterol readings. It may be possible that when my cholesterol went from its fairly predictable 220-230 about three years ago up to almost 300, this was the MM starting up. I'm going to check with PZ to see what, if anything, the protein levels were back then. He had mentioned that there hadn't been high protein in my bloodwork before but it's possible he didn't run all the same labs. In any case, when I go in for high-dose chemo, I will have to be off all meds including Lipitor (which irritates the liver). And no wine. I want my liver as strong as possible to deal with the high-dose chemo. So once I start treatment, two glasses a week is it for me. : (
* He thinks there should NOT being any long-term peripheral neuropathy as long as I am not on Thalidomide. So one big question for BB is why use Thalidomide if Revlimid is more efficacious and not likely to cause neuropathy? Velcade still will, but it is dose and schedule dependent and there are things that can be done to modulate those. "We've gotten very good at that," he says. The other big question for BB is the likelihood of leukemia and secondary marrow problems. KA says BB will tell me it's not a problem at all, "but I am whispering that it might be." I wish there was less uncertainty about these things! The last thing I want to do is get into remission for 7 years with BB, have it recur, and then have mangled my marrow such that I can't tolerate or benefit from HDAC inhibitors, Carfilzomib (next-gen Velcade), etc.
* He said there was no real difference between in-patient vs. out-patient. He said that "old timers" like him and Dana Farber would be inclined for in-patient. I think more and more that this depends on the quality of the hospital -- I want to make sure it's new, and clean, and has a good means of confining germs. And that the rooms aren't someplace that I'll be miserable while I'm there, of course (beyond the inevitable misery of the disease and treatment itself).
* He thought I shouldn't wait very long for treatment, so I'm reluctantly moving up the start date from March 2 to February 16th, I think. He said the marrow involvement is significant and the report says that cells have formed in "sheets" and "clusters" and that makes him concerned. They are dividing rapidly. Stupid little buggers -- I'm gonna poison them good!!
So that was that conversation.
In other news, my brothers are being blood typed for an allogeneic transplant down the line (KA told me Kathy Giusti had one of these, but from an identical twin which is rare and which obviously makes it easier to tolerate). That's good news because it means Kathy may be cured and I want her healthy and around for a long time to help lead the fight against this disease.
I've worked things out with Disney where I *THINK* I will be able to be covered throughout my illness, provided I can work a bit from home now and then, which I should be able to do. So that takes care of the insurance concern. Afterwards, I will need to be disease free for five years before I'll be eligible for long-term disability...so let's hope this is the only kind of cancer I ever get! :)
I also learned that even if a place (like SH's shop) is not in my healthcare network, they will still pay 100% of costs, it's just a higher "deductible" on that. For in-network places, after the first $2500 of co-payments, 100% is paid. For out-of-network places, it takes $5000 before 100% is paid. Sadly, this is gonna cost me a lot more than $5000 so it doesn't really matter. We're looking at a $2500 penalty (and even that should be tax-deductible) for using SH versus an in-network provider...I can live with that.
Elsewhere on the expense front, I really think I want 24-hour private nursing while I am in-patient and neutropenic (meaning no immune system). That won't be cheap, but I want somebody making sure all my medications are being given, that doctors are consulting each other to watch for side effects and to make sure the right anti-nausea and other meds are being given, to make sure people wash their hands before they come in and out of the room (if I'm asleep, I can't be telling people to do this), etc. With luck, I'll only need this for maybe 20 days or so over the course of treatment. That's going to be a LOT of money, but if I can cure this, it will be worth it.
Okay...that's a big, big update for one day. I'll post more as I know it. The next consult I have will be on Jan 21st with BD. I'm trying to reschedule SJ earlier since Feb 23rd is probably too late (KA thought it might be pushing it to wait 6 weeks...we'll see what BD has to say). We'll also have more on the progression of the disease at the end of the month after I spend a week in Little Rock with BB and his people. KA thinks BB will say I need immediately treatment as well. So putting it off for another full month might be too much.
Feb 16 looks like the first really ugly day for me. But I'm ready. I will overcome this thing.
Cancer picked the wrong guy to mess with!
Thursday, January 8, 2009
A visit to Dr. SH...
So I went back to the first doctor, where this all started in mid November, to bring him up to date on my thinking and to try to do something about this rib pain.
He concurred that I need to start treatment soon. I asked him if it could wait until March 2...he thought it probably could but he wasn't certain. I explained that I had a number of doctors left to see; he thought I didn't need to see SJ in late February but encouraged me to see BB and talk with KA (which I am doing Monday).
He concurred that I need to start treatment soon. I asked him if it could wait until March 2...he thought it probably could but he wasn't certain. I explained that I had a number of doctors left to see; he thought I didn't need to see SJ in late February but encouraged me to see BB and talk with KA (which I am doing Monday).
I told him I was leaning towards BB's protocol and I discussed my rationale, which he agreed with (more or less). He did express concern about the amount and different kinds of chemo in BB's protocol, which he said was very nasty stuff. In particular, the "C" and "E" of the PACE regimen (cytoxan (sp) and etoposide (sp)) are associated with late-term acute leukemia. In other words, I could survive myeloma only to find myself with leukemia in 15 years time. And that's not something that has a very good prognosis at all. So this is something I will ask BB about.
SH also said he wasn't a believer in maintenance therapy -- the continuation of drugs after completion of primary therapy (the transplants). Velcade, he said, is a very tough drug. He noted that SF at City of Hope does believe in maintenance therapy...and certainly long term maintenance therapy is a key part of BB's protocol. So I'll have to figure this out.
SH did say that he would support any decision I wanted to make, and would administer whatever induction, consolidation or maintenance therapy I decided upon. Although he did think doing the induction in-patient for the first week or so was a good idea since there was a lot of chemo ("poison" as he put it) in VTD-PACE.
I asked about other side effects. He guaranteed that I would have neuropathy -- numbness in fingers and toes. In many cases he said it is controllable. It will likely go away but it can take years as nerves take a long time to heal. So that's not great.
On the other hand, he said any loss of taste would be temporary -- probably not lasting more than a year and perhaps less than that.
I have lytic bone lesions on my ribs, and they could lead to fractures if I am not very careful. I have been prescribed Vicodin for pain -- the only other thing to do would be to start on Dexamethasone, but I want to come into BB's therapy free from any of those drugs prior to starting treatment. Then the MM cells won't know what hit them. SH did not think I had to worry about spinal compression now or any time in the next seven weeks, so that much is good. I need to be careful not to lift anything -- not even the kids -- and to report any new symptoms, fevers, chills, worsening pain, etc.
Had a good conversation with the HR people at Disney today -- I'm hopeful that by working here and there through my treatment when I'm not too fatigued, I will be covered throughout my treatment. I put together a detailed calendar and I think I will be out of the office until December (best case) or January (worst case).
Aaarghh....I just sneezed and my ribs hurt like hell now...
Wednesday, January 7, 2009
Myeloma waits for no man...
Boy did I have plans. My band was going to headline a festival in late March, my annual Las Vegas trip for the Final Four (watch this be the year UCLA pulls it out), plus some doctor appointments I really wanted to keep. And then there are the projects at work that I'm very invested in that I wanted to see through to fruition.
Alas, not to be. Based on the progression of my M-Spike (to say nothing of the ribs, which I'll have X-rayed tomorrow) Dr. SF thinks I will need to start treatment shortly after returning from Dr. BB's joint at the end of this month (I am certainly Stage II now and probably on my way to Stage III, depending on how many lesions I have on my bones). February is a big month -- Jill has a birthday and there are some things I want to do, people I want to see, etc. before I take myself out of commission for an extended period of time. So I'm hoping I can at least put things off to the beginning of March. Like my father used to say, "we shall see what we shall see."
But what I won't be able to do is put it off until mid-April. Which is a pity.
On the other hand, the sooner I start, the sooner I'll be done.
Unless Dr. KA talks me out of it during my consult with him on Monday, I'll be opting for Dr. BB's protocol...the only question is how much to do out of state versus at City of Hope. I really don't want to disrupt Parker's school, so moving the family to a different state and a different school is out of the question. We have to consider that.
Speaking of Parker, we told her last night. I hadn't planned on it, but my ribs hurt so much and she saw me wincing and moving very slowly. She asked me what was wrong, and rather than give her a half answer about the ribs, I figured now was time. I told her daddy had something wrong with his blood (isn't that weird, Parker???) and that the doctors were going to make me better, but I had to take lots of silly medicine and it was going to make all my hair fall out! No hair on my head, or my arms, or my feet, or my legs, or my eyebrows...no hair at all.
She laughed. She told me to take medicine now so she can see me bald.
It went as well as could have been hoped for. Thank God she's only six and not old enough to ask frightening questions or draw connections.
In other news, got the golf club to at least reduce my membership fees for six months (it's better than nothing). Still have to solve long-term disability insurance issues somehow.
Now drinking: 1982 Chateau Leoville Las Cases. Yum!
Alas, not to be. Based on the progression of my M-Spike (to say nothing of the ribs, which I'll have X-rayed tomorrow) Dr. SF thinks I will need to start treatment shortly after returning from Dr. BB's joint at the end of this month (I am certainly Stage II now and probably on my way to Stage III, depending on how many lesions I have on my bones). February is a big month -- Jill has a birthday and there are some things I want to do, people I want to see, etc. before I take myself out of commission for an extended period of time. So I'm hoping I can at least put things off to the beginning of March. Like my father used to say, "we shall see what we shall see."
But what I won't be able to do is put it off until mid-April. Which is a pity.
On the other hand, the sooner I start, the sooner I'll be done.
Unless Dr. KA talks me out of it during my consult with him on Monday, I'll be opting for Dr. BB's protocol...the only question is how much to do out of state versus at City of Hope. I really don't want to disrupt Parker's school, so moving the family to a different state and a different school is out of the question. We have to consider that.
Speaking of Parker, we told her last night. I hadn't planned on it, but my ribs hurt so much and she saw me wincing and moving very slowly. She asked me what was wrong, and rather than give her a half answer about the ribs, I figured now was time. I told her daddy had something wrong with his blood (isn't that weird, Parker???) and that the doctors were going to make me better, but I had to take lots of silly medicine and it was going to make all my hair fall out! No hair on my head, or my arms, or my feet, or my legs, or my eyebrows...no hair at all.
She laughed. She told me to take medicine now so she can see me bald.
It went as well as could have been hoped for. Thank God she's only six and not old enough to ask frightening questions or draw connections.
In other news, got the golf club to at least reduce my membership fees for six months (it's better than nothing). Still have to solve long-term disability insurance issues somehow.
Now drinking: 1982 Chateau Leoville Las Cases. Yum!
Monday, January 5, 2009
Ribs...
It's getting very painful. I feel like with every deep breath one of the ribs on the right side of my body is going to break. I'm going to have to call the doctor tomorrow and see if we can do anything. If I had long-term disability, I would stop work right now.
This sucks.
This sucks.
Sunday, January 4, 2009
Bone pain and something of a bummer...
The pain in my back is better and certainly has improved since the golf round, but the pain in my ribs is more persistent now. I'm concerned that I will have to start treatment soon. There were things I wanted to do but this is a disease of inconvenience in many ways.
I'm vacillating between taking advil versus not doing it so I'm cognizant of what hurts, but I'm going to yield to the advil pretty soon.
Upon reading more of Dr. BB's writing, I'm afraid the mild-sounding regiment that I went through with Dr. SF the other day is the "lite" version that he is going to explore in upcoming trials. I don't want the "lite" version as while it will have reduced toxicity, it may also not work as well. So that means I may need to have double the induction therapy that I had seen, which I suppose isn't the end of the world but it's a bummer because I'd taken the fairly manageable doses as a good sign. I'm particularly concerned about staying on high-dose dexamethasone for more than one cycle -- the more I read about the drug (including higher treatment-related mortality rates on it) the more disconcerted I am.
Anyhow, they can't all be good days. Tomorrow I need to tackle long-term disability insurance, ensuring my trip to BB is covered by insurance, and putting together a trust for the kids.
I'm vacillating between taking advil versus not doing it so I'm cognizant of what hurts, but I'm going to yield to the advil pretty soon.
Upon reading more of Dr. BB's writing, I'm afraid the mild-sounding regiment that I went through with Dr. SF the other day is the "lite" version that he is going to explore in upcoming trials. I don't want the "lite" version as while it will have reduced toxicity, it may also not work as well. So that means I may need to have double the induction therapy that I had seen, which I suppose isn't the end of the world but it's a bummer because I'd taken the fairly manageable doses as a good sign. I'm particularly concerned about staying on high-dose dexamethasone for more than one cycle -- the more I read about the drug (including higher treatment-related mortality rates on it) the more disconcerted I am.
Anyhow, they can't all be good days. Tomorrow I need to tackle long-term disability insurance, ensuring my trip to BB is covered by insurance, and putting together a trust for the kids.
Friday, January 2, 2009
Could a consensus be building?
Had a very productive appointment with Dr. SF at City of Hope. At the end of the appointment, I explained my frustration with the administrative screwups and was put mostly at ease by SF, who indicated that there are ways to cut through the red tape that he'll help me with, and that once I'm in-patient the quality of the care is second to none. I am hopeful that I'll be able to see the effectiveness of the former concept before having to test out the latter.
At any rate, today's meeting was interesting for a number of reasons:
* My monoclonal spike increased from 4 mg/DL on Nov. 11th to 5.8 mg/DL on Nov. 26th. That's not terrific. If it continues at that pace, I may not have until May to begin treatment, which would be unfortunate for both personal and professional reasons.
* Dr. BB's results (again I almost typed out his name) are "impossible to ignore," in the eyes of SF. SF and others are recommending that a national trial be done using this protocol on newly-diagnosed patients and City of Hope is one of the centers that will be participating. He believes this trial would be set up in three to four months -- unfortunately not of much use if I have to do something before May. Here's hoping that protein spike has leveled off or even fallen when they get the results of today's bloodwork back next week.
* We went through BB's protocol in detail, and while it is aggressive and intensive, there are positives. For example, the length of the high-dose dexamehasone treatment is only four days. There are likewise only four days of the PACE chemo agents (although they do have all the bad side-effects, I can be treated for nausea, etc.) and they aren't the megadoses like the Melphalan will be. I will likely be hospitalized for this week of treatment.
* Since I'll have a catheter for the chemo, they can use this to harvest the stem cells. That is a minor victory but it does mean I won't need to have both arms plugged into a machine unable to move. I'll be plugged in but can play a videogame, read a book, type on a computer, etc.
* They can do the entire treatment in the Los Angeles area.
* The popping sound I heard in my back is likely a ligament rolling over a bone and while the back and rib pain is related to the myeloma, until such time as things start showing up in X-Rays, there's no need to go on biphosphonates at this time. At the end of January, we'll have a new batch of X-Rays and we can review that decision.
* My brothers will be HLA-typed for an eventual allogeneic transplant if need be.
* It's safe to take Lipitor, and both curcumin (which he said is being studied) and neutraceuticals (which he said have no clinical trials to speak of) could cause unpredictable results from the battery of medications I'll be on during treatment, so he recommended I go back on the Lipitor and lay off the alternative treatments. Fine with me...as I indicated I'm a big western medicine guy.
In short, this discussion went a long way to moving away from the "BB is two sandwiches short of a picnic" type concern that I started out with at my initial appointment. We discussed some of the nuances in the medications (e.g. thalidomide vs. revlimid, etc.) and some of the reasons that people might not buy into BB's protocol (which boil down to one might be able to get the same results with a less toxic regimen, but we don't know yet).
All in all, with the exception of the rising protein level, it was a very good meeting. I had already been moving towards BB's protocol and now there may be an opportunity to do that with a local doctor that I've come to know and like, which saves the logistic issues of monthly visits to Arkansas for the next three years, plus three months of intensive treatment there.
I'll still be visiting BB in late January, assuming the protein level hasn't risen so dramatically as to require treatment even sooner. I'll have a battery of tests done by BB, which SF will review when he and I next meet on February 3rd. If the levels remain manageable, then I will have bought another month during which I can visit SJ in New York, etc. Then I'll meet again with SF monthly until we're ready to go. I have stuff to do through April so hopefully this can be put off until May. We shall see.
More to come as events merit / I think of it.
At any rate, today's meeting was interesting for a number of reasons:
* My monoclonal spike increased from 4 mg/DL on Nov. 11th to 5.8 mg/DL on Nov. 26th. That's not terrific. If it continues at that pace, I may not have until May to begin treatment, which would be unfortunate for both personal and professional reasons.
* Dr. BB's results (again I almost typed out his name) are "impossible to ignore," in the eyes of SF. SF and others are recommending that a national trial be done using this protocol on newly-diagnosed patients and City of Hope is one of the centers that will be participating. He believes this trial would be set up in three to four months -- unfortunately not of much use if I have to do something before May. Here's hoping that protein spike has leveled off or even fallen when they get the results of today's bloodwork back next week.
* We went through BB's protocol in detail, and while it is aggressive and intensive, there are positives. For example, the length of the high-dose dexamehasone treatment is only four days. There are likewise only four days of the PACE chemo agents (although they do have all the bad side-effects, I can be treated for nausea, etc.) and they aren't the megadoses like the Melphalan will be. I will likely be hospitalized for this week of treatment.
* Since I'll have a catheter for the chemo, they can use this to harvest the stem cells. That is a minor victory but it does mean I won't need to have both arms plugged into a machine unable to move. I'll be plugged in but can play a videogame, read a book, type on a computer, etc.
* They can do the entire treatment in the Los Angeles area.
* The popping sound I heard in my back is likely a ligament rolling over a bone and while the back and rib pain is related to the myeloma, until such time as things start showing up in X-Rays, there's no need to go on biphosphonates at this time. At the end of January, we'll have a new batch of X-Rays and we can review that decision.
* My brothers will be HLA-typed for an eventual allogeneic transplant if need be.
* It's safe to take Lipitor, and both curcumin (which he said is being studied) and neutraceuticals (which he said have no clinical trials to speak of) could cause unpredictable results from the battery of medications I'll be on during treatment, so he recommended I go back on the Lipitor and lay off the alternative treatments. Fine with me...as I indicated I'm a big western medicine guy.
In short, this discussion went a long way to moving away from the "BB is two sandwiches short of a picnic" type concern that I started out with at my initial appointment. We discussed some of the nuances in the medications (e.g. thalidomide vs. revlimid, etc.) and some of the reasons that people might not buy into BB's protocol (which boil down to one might be able to get the same results with a less toxic regimen, but we don't know yet).
All in all, with the exception of the rising protein level, it was a very good meeting. I had already been moving towards BB's protocol and now there may be an opportunity to do that with a local doctor that I've come to know and like, which saves the logistic issues of monthly visits to Arkansas for the next three years, plus three months of intensive treatment there.
I'll still be visiting BB in late January, assuming the protein level hasn't risen so dramatically as to require treatment even sooner. I'll have a battery of tests done by BB, which SF will review when he and I next meet on February 3rd. If the levels remain manageable, then I will have bought another month during which I can visit SJ in New York, etc. Then I'll meet again with SF monthly until we're ready to go. I have stuff to do through April so hopefully this can be put off until May. We shall see.
More to come as events merit / I think of it.
Thursday, January 1, 2009
No more golf
Well today I tried to play golf for the first time since the diagnosis. My back pain has been present but manageable so I popped a vicodin and went to play. I felt pain on about 80% of the swings, sometimes just a twinge, sometimes enough to make me drop to the ground after a swing. But I was managing. I made it through the first nine holes and thought I would continue. I wasn't scoring very well because it was impossible to swing through the ball -- I couldn't rotate around my spine as I'm supposed to. But I thought just to be able to finish the round was a good goal.
I drove on 10 and the ball was a little low but had a decent draw to it and wound up in the center of the fairway about 170 yards from the pin. I took out my club and swung and I felt like somebody had stabbed me in the back with an inch-thick steel rod. I heard a crack (like a knuckle cracking) and I fell to the ground in pain. I was really scared...I thought for a moment that I'd literally broken my back or at a minimum shattered a vertebrae there. It felt very warm at the location where it was tweaked. The pain was very intense for about five seconds and I thought for sure I was going to have to go to the hospital.
It subsided just enough for me to get to my feet, so I knew my back wasn't broken, but golf was out of the question. I moved slowly back to the cart and called Jill to let her know what had happened. My back is tender now but doesn't hurt. Nonetheless, no more golf until I'm better.
I'm going to see Forman tomorrow morning and will ask him about getting on biophosphonates for the back. They have some side effects but I have to arrest the damage being done.
Separately, I received an email from a a very nice woman named Lois who is 56 and who recently completed Dr. BB's therapy. She is in complete remission and feels very good about the protocol and wonders why anybody in my situation would think twice about it. I will be corresponding with her and another couple of people that have gone through it in an effort to educate myself.
One thing that is becoming a bigger concern to me is the lack of long-term disability insurance. I must find a way to get it as I'm going to be out of the office for more than six months -- probably as long as a year.
Anyhow, that's all the news for today. More to post tomorrow after I see Dr. SF, where my topics of questions will include (a) biophosphonates, (b) how he feels about Dr.BB's protocol, (c) whether he could give me any of the maintenance therapy even if he doesn't want to do the tandem transplants, etc. (d) whether any of the information presented at the recent hematology conference changed his perspective on treatment, (e) what the current state of my disease is given the blood work that we did there a month ago -- and they will do more tomorrow, (f) what kind of HLA typing my brothers and I need to do, and (g) what his colleagues said when he had them review my case.
I drove on 10 and the ball was a little low but had a decent draw to it and wound up in the center of the fairway about 170 yards from the pin. I took out my club and swung and I felt like somebody had stabbed me in the back with an inch-thick steel rod. I heard a crack (like a knuckle cracking) and I fell to the ground in pain. I was really scared...I thought for a moment that I'd literally broken my back or at a minimum shattered a vertebrae there. It felt very warm at the location where it was tweaked. The pain was very intense for about five seconds and I thought for sure I was going to have to go to the hospital.
It subsided just enough for me to get to my feet, so I knew my back wasn't broken, but golf was out of the question. I moved slowly back to the cart and called Jill to let her know what had happened. My back is tender now but doesn't hurt. Nonetheless, no more golf until I'm better.
I'm going to see Forman tomorrow morning and will ask him about getting on biophosphonates for the back. They have some side effects but I have to arrest the damage being done.
Separately, I received an email from a a very nice woman named Lois who is 56 and who recently completed Dr. BB's therapy. She is in complete remission and feels very good about the protocol and wonders why anybody in my situation would think twice about it. I will be corresponding with her and another couple of people that have gone through it in an effort to educate myself.
One thing that is becoming a bigger concern to me is the lack of long-term disability insurance. I must find a way to get it as I'm going to be out of the office for more than six months -- probably as long as a year.
Anyhow, that's all the news for today. More to post tomorrow after I see Dr. SF, where my topics of questions will include (a) biophosphonates, (b) how he feels about Dr.BB's protocol, (c) whether he could give me any of the maintenance therapy even if he doesn't want to do the tandem transplants, etc. (d) whether any of the information presented at the recent hematology conference changed his perspective on treatment, (e) what the current state of my disease is given the blood work that we did there a month ago -- and they will do more tomorrow, (f) what kind of HLA typing my brothers and I need to do, and (g) what his colleagues said when he had them review my case.
Happy New Year...and a change in luck
I took Jill out to dinner last night at Spago to celebrate New Year's Eve. Actually, more to say a giant "screw you 2008" but hey, the food was the same.
In 2008, Parker was diagnosed with cone dystrophy, a horrible eye condition that is going to leave her legally blind WITH glasses and with no existing prospects for correction (people, I urge you, support any and all stem cell research). My wife spent a week in the hospital with meningitis. And of course I was diagnosed with incurable cancer (again, support stem cell research). 2008, in short, sucked. Or to use slightly more mellifluous verbiage, as the Queen of England once said in reference to the year where Diana died, 2008 is our "Anno Horribilis."
Luck, it seems, may have started turning already. As you may know, I'm an avid wine collector, with around 4,000 bottles in the cellar. Some of these are relatively inexpensive, many are reasonable, and a few are quite pricey. While I am resolved to beat this disease, I am somewhat mindful that the more expensive wines should be drunk perhaps a bit sooner than I was planning, in part because even if I kick Myeloma one of the things that can happen as a result of therapy is that taste buds can be damaged or destroyed. I might never enjoy wine again.
So I brought one of the gems last night: a 1990 Beasejour-Duffau, which the world's foremost wine critic Robert Parker assigned 100 points and about which he wrote:
So anyhow, we were enjoying this gem of a wine, having a wonderful dinner, and observing the 30-odd people at three adjoining tables who looked like they were mafiosos. The guy that I assumed was the capo was drinking profusely and at one point started dancing around (I'm thinking at this point it was probably the Greek mob rather than the Cosa Nostra). Anyhow the guy danced right into our table, knocking a bunch of water, our food, etc. on my lap. Thankfully we lost no wine but of course I made a minor fuss out of things and suggested that we grab the remainder of the wine and head home for the evening because I would be upset and unable to have a good time and afraid that if I glared at this guy or his friends we'd be "whacked." :)
Now a few years ago, at an equally nice establishment, the wife had a tureen of lobster bisque dumped on her and the establishment did virtually nothing. After being told that they should be ashamed of themselves, the maitre'd there reluctantly offered to pay for dry cleaning. Pretty pathetic. At any rate, I wasn't assuming we'd get a whole lot more from Spago.
But I was wrong. They cleaned everything up, apologized profusely, brought a complementary split of Krug N.V. champagne (I had brought one for us to the restaurant but that was gone) and advised that the don who knocked the table over wanted to do something nice and had a very good cellar. I said that I'd brought a wine that, were it on their list, would be embarrassingly expensive (and since people seemed to think some of it had spilled -- and perhaps it did -- I did nothing to disabuse them of this notion). The sommelier agreed that my bottle was very nice, but again said the don had a very nice cellar.
At any rate, they brought over a bottle compliments of the don. It was a 1982 Mouton Rothschild, which is about 30% more expensive than even the wine I brought! We took it home and put it in the cellar. Parker writes that this wine, too, is 100 points.
100 years, of which 65 are left and it's not yet begun to be in its prime. There's a message there. In vino veritas.
I bought the man a nice glass of scotch, gave him the last glass of our 1990 Beausejour, and told him he can knock into my table anytime.
Luck, it seems, is changing already. High time for it. And I will be healthy this year.
Happy New Year to you all.
In 2008, Parker was diagnosed with cone dystrophy, a horrible eye condition that is going to leave her legally blind WITH glasses and with no existing prospects for correction (people, I urge you, support any and all stem cell research). My wife spent a week in the hospital with meningitis. And of course I was diagnosed with incurable cancer (again, support stem cell research). 2008, in short, sucked. Or to use slightly more mellifluous verbiage, as the Queen of England once said in reference to the year where Diana died, 2008 is our "Anno Horribilis."
Luck, it seems, may have started turning already. As you may know, I'm an avid wine collector, with around 4,000 bottles in the cellar. Some of these are relatively inexpensive, many are reasonable, and a few are quite pricey. While I am resolved to beat this disease, I am somewhat mindful that the more expensive wines should be drunk perhaps a bit sooner than I was planning, in part because even if I kick Myeloma one of the things that can happen as a result of therapy is that taste buds can be damaged or destroyed. I might never enjoy wine again.
So I brought one of the gems last night: a 1990 Beasejour-Duffau, which the world's foremost wine critic Robert Parker assigned 100 points and about which he wrote:
I have had the 1990 Beausejour-Duffau a half-dozen times since the in-the-bottle report in Issue #85 (2-28-93). I believe this wine may, in 15-20 years, be considered to be one of the greatest wines made this century. It is in a league with such legends as the 1961 Latour a Pomerol. Beausejour-Duffau's 1990 has always been the most concentrated wine of the 1990 vintage. The color remains an opaque murky purple. The nose offers up fabulously intense aromas of black fruits (plums, cherries, and currants), along with smoke, a roasted herb/nut component, and a compelling minerality. The wine is fabulously concentrated, with outstanding purity, and a nearly unprecedented combination of richness, complexity, and overall balance and harmony. What makes this effort so intriguing is that as good as Beausejour-Duffau can be, I know of no vintage of this estate's wine that has come remotely close to this level of quality. In several blind tastings, I have mistaken this wine for either the 1989 or 1990 Petrus! However, the 1990 Beausejour-Duffau is even more concentrated than those two prodigious efforts. It should be at its best between 2000-2030.
So anyhow, we were enjoying this gem of a wine, having a wonderful dinner, and observing the 30-odd people at three adjoining tables who looked like they were mafiosos. The guy that I assumed was the capo was drinking profusely and at one point started dancing around (I'm thinking at this point it was probably the Greek mob rather than the Cosa Nostra). Anyhow the guy danced right into our table, knocking a bunch of water, our food, etc. on my lap. Thankfully we lost no wine but of course I made a minor fuss out of things and suggested that we grab the remainder of the wine and head home for the evening because I would be upset and unable to have a good time and afraid that if I glared at this guy or his friends we'd be "whacked." :)
Now a few years ago, at an equally nice establishment, the wife had a tureen of lobster bisque dumped on her and the establishment did virtually nothing. After being told that they should be ashamed of themselves, the maitre'd there reluctantly offered to pay for dry cleaning. Pretty pathetic. At any rate, I wasn't assuming we'd get a whole lot more from Spago.
But I was wrong. They cleaned everything up, apologized profusely, brought a complementary split of Krug N.V. champagne (I had brought one for us to the restaurant but that was gone) and advised that the don who knocked the table over wanted to do something nice and had a very good cellar. I said that I'd brought a wine that, were it on their list, would be embarrassingly expensive (and since people seemed to think some of it had spilled -- and perhaps it did -- I did nothing to disabuse them of this notion). The sommelier agreed that my bottle was very nice, but again said the don had a very nice cellar.
At any rate, they brought over a bottle compliments of the don. It was a 1982 Mouton Rothschild, which is about 30% more expensive than even the wine I brought! We took it home and put it in the cellar. Parker writes that this wine, too, is 100 points.
Opaque purple-colored showing absolutely no signs of lightening, Mouton's 1982 is a backward wine. Still tasting like a 4-5 year old Bordeaux, it will evolve for another half century.
At the Philadelphia tasting, it was impossibly impenetrable and closed, although phenomenally dense and muscular. However, on two other recent occasions, I decanted the wine in the morning and consumed it that evening and again the following evening. It is immune to oxidation! Moreover, it has a level of concentration that represents the essence of the Mouton terroir as well as the high percentage of Cabernet Sauvignon it contains.
Cassis, cedar, spice box, minerals, and vanillin are all present, but this opaque black/purple Pauillac has yet to reveal secondary nuances given its youthfulness. It exhibits huge tannin, unreal levels of glycerin and concentration, and spectacular sweetness and opulence. Nevertheless, it demands another decade of cellaring, and should age effortlessly for another seven or eight decades.
I have always felt the 1982 Mouton was perfect, yet this immortal effort might be capable of lasting for 100 years! Readers who want to drink it are advised to decant it for at least 12-24 hours prior to consumption. I suggest double decanting, i.e., pouring it into a clean decanter, washing out the bottle, and then repouring it back into the bottle, inserting the cork, leaving the air space to serve as breathing space until the wine is consumed 12-24 hours later. The improvement is striking. The fact that it resists oxidation is a testament to just how youthful it remains, and how long it will last. Anticipated maturity: 2010-2075.
100 years, of which 65 are left and it's not yet begun to be in its prime. There's a message there. In vino veritas.
I bought the man a nice glass of scotch, gave him the last glass of our 1990 Beausejour, and told him he can knock into my table anytime.
Luck, it seems, is changing already. High time for it. And I will be healthy this year.
Happy New Year to you all.
Tuesday, December 30, 2008
City of Dopes strikes again...
I'm really starting to be bothered by the utter ineptitude of the administrative people there.
First, they claimed (incorrectly) that I'd been told a week ago about the appointment change, which is frankly a bald-faced lie. Then they said they couldn't get me in to see SF until the 13th, which is too late. Later that same day, PinnacleCare spoke with them when they called back to confirm the meeting that I'd already cancelled. Evidently they claimed I didn't cancel it! Fortunately I told PinnacleCare exactly whom I'd spoken with, and they straightened it out. We left it last night that PinnacleCare would speak with them first thing and they would try to get me in today, and that they would certainly get me in before the 13th as Dr. SF agreed that was too long.
So this morning they still had no time today, but they at least said they could see me "anytime tomorrow or Friday." I offered specific times. Then they said they couldn't do those times. They offered one time, first thing Friday morning. This is a nightmare as it's 50 miles away and in a heavy commute artery, but as this is January 2nd hopefully most people will not be on the road.
So I agreed to this time, and PinnacleCare called them back and left a message. City of Dopes took THREE HOURS (and two followups) from PinnacleCare before they actually said okay to that time, and they then said that Dr. SF was going to personally call me today. I'm actually getting a bit nervous because he wouldn't have that urgency if he didn't think I was progressing more rapidly. So now I want to speak with him.
Anybody want to bet that he didn't call me?
Honestly, this has reached the point where they are so utterly disorganized and inept that I'm not confident in the quality of my care there. My life will literally be in their hands. If they can't get an appointment straight, how can I be confident that they'll give me the right medicine at the right time? I will be on up to 6 antibiotics alone, plus blood transfusions, platelet infusions, medication for the side effects of chemo, etc. etc. How can I trust them to have any clue of what is going on?
It's infuriating.
I don't normally do this, but I'm going to call Dr. F who runs the whole place tomorrow, and I'm going to tell him that I'm rapidly losing confidence in the quality of the care there.
Meanwhile, Dr. KA, a very prominent guy at Dana Farber, has been reviewing my materials and has decided to handle my case personally rather than refer it to his team, which is good. He is a "novel drug guy" as opposed to a "transplant guy" so it will be an interesting counterpoint to the transplant-speak that I've been immersed in, and probably as opposite to BB as one can find short of JB whom I've already ruled out. I'll be speaking with him on the morning of the 12th.
Lastly, in addition to seeing Dr. SJ on the 23rd in New York, PinnacleCare has set me up with somebody at Memorial Sloan-Kettering for the following morning, which can't hurt.
As it stands now, I'm going out this Friday morning to City of Dopes. Assuming that actually takes place, I'll post more information here as it arrives.
Happy New Year.
First, they claimed (incorrectly) that I'd been told a week ago about the appointment change, which is frankly a bald-faced lie. Then they said they couldn't get me in to see SF until the 13th, which is too late. Later that same day, PinnacleCare spoke with them when they called back to confirm the meeting that I'd already cancelled. Evidently they claimed I didn't cancel it! Fortunately I told PinnacleCare exactly whom I'd spoken with, and they straightened it out. We left it last night that PinnacleCare would speak with them first thing and they would try to get me in today, and that they would certainly get me in before the 13th as Dr. SF agreed that was too long.
So this morning they still had no time today, but they at least said they could see me "anytime tomorrow or Friday." I offered specific times. Then they said they couldn't do those times. They offered one time, first thing Friday morning. This is a nightmare as it's 50 miles away and in a heavy commute artery, but as this is January 2nd hopefully most people will not be on the road.
So I agreed to this time, and PinnacleCare called them back and left a message. City of Dopes took THREE HOURS (and two followups) from PinnacleCare before they actually said okay to that time, and they then said that Dr. SF was going to personally call me today. I'm actually getting a bit nervous because he wouldn't have that urgency if he didn't think I was progressing more rapidly. So now I want to speak with him.
Anybody want to bet that he didn't call me?
Honestly, this has reached the point where they are so utterly disorganized and inept that I'm not confident in the quality of my care there. My life will literally be in their hands. If they can't get an appointment straight, how can I be confident that they'll give me the right medicine at the right time? I will be on up to 6 antibiotics alone, plus blood transfusions, platelet infusions, medication for the side effects of chemo, etc. etc. How can I trust them to have any clue of what is going on?
It's infuriating.
I don't normally do this, but I'm going to call Dr. F who runs the whole place tomorrow, and I'm going to tell him that I'm rapidly losing confidence in the quality of the care there.
Meanwhile, Dr. KA, a very prominent guy at Dana Farber, has been reviewing my materials and has decided to handle my case personally rather than refer it to his team, which is good. He is a "novel drug guy" as opposed to a "transplant guy" so it will be an interesting counterpoint to the transplant-speak that I've been immersed in, and probably as opposite to BB as one can find short of JB whom I've already ruled out. I'll be speaking with him on the morning of the 12th.
Lastly, in addition to seeing Dr. SJ on the 23rd in New York, PinnacleCare has set me up with somebody at Memorial Sloan-Kettering for the following morning, which can't hurt.
As it stands now, I'm going out this Friday morning to City of Dopes. Assuming that actually takes place, I'll post more information here as it arrives.
Happy New Year.
Monday, December 29, 2008
Get down with the sickness...
I'm sure the title will be lost on most of you, but it's a song title.
As it happens, it also relates to chemotherapy.
I've mentioned recently that Dr. BB's work at least speaks in terms of a cure. That much is great. But now I'm researching a lot on it...and it involves hardcore chemotherapy. Four kinds of it, in fact. And it is daunting to think about how sick I will get. With the one-transplant standard protocol, we're talking about two days of very intensive chemo, and one kind (Melphalan). That's destructive enough. But BB has FOUR MONTHS of FOUR DIFFERENT KINDS of chemo in total, PLUS four days of intensive Melphalan.
The mortality rate for a standard transplant is about .5%, and given my age, Dr. SH told me my risk is about 1 in 1,000. Frankly, with my luck lately, that doesn't strike me as all that great.
But BB's treatment-related mortality is 5%. TEN TIMES as great. This stuff makes you very, very sick. Now granted, my age should be helpful. If the same co-efficient applies, I might still be considered a 1 in 100 mortality risk. I think I could live with that, if his data is true that there's a 50 percent chance that I'll be cured.
I heard back from one woman who went through BB's Total Therapy 3 protocol. It's the holidays and she is busy but she indicated she would write more to me later this week, and I will ask her all about side effects and her treatment experience.
More to come.
As it happens, it also relates to chemotherapy.
I've mentioned recently that Dr. BB's work at least speaks in terms of a cure. That much is great. But now I'm researching a lot on it...and it involves hardcore chemotherapy. Four kinds of it, in fact. And it is daunting to think about how sick I will get. With the one-transplant standard protocol, we're talking about two days of very intensive chemo, and one kind (Melphalan). That's destructive enough. But BB has FOUR MONTHS of FOUR DIFFERENT KINDS of chemo in total, PLUS four days of intensive Melphalan.
The mortality rate for a standard transplant is about .5%, and given my age, Dr. SH told me my risk is about 1 in 1,000. Frankly, with my luck lately, that doesn't strike me as all that great.
But BB's treatment-related mortality is 5%. TEN TIMES as great. This stuff makes you very, very sick. Now granted, my age should be helpful. If the same co-efficient applies, I might still be considered a 1 in 100 mortality risk. I think I could live with that, if his data is true that there's a 50 percent chance that I'll be cured.
I heard back from one woman who went through BB's Total Therapy 3 protocol. It's the holidays and she is busy but she indicated she would write more to me later this week, and I will ask her all about side effects and her treatment experience.
More to come.
City of Dopes
These people, administratively, leave a lot to be desired.
We got a call at home today, informing me that my appointment tomorrow has been unceremoniously moved. They didn't bother asking me to see if it was okay, and of course it's not. So we've had this on the calendar for more than a month, and on 18 hours' notice they figure they can just call and change it? Sorry. I moved my whole day around tomorrow to accommodate the appointment.
I called and voiced my displeasure. I can't really have blood drawn right now anyway because I'm getting over a bad cold and that will cause a normal immunoglobin response in my blood, which will throw off all their tests. So for now, we're going to try for the 13th...which is later than either I or the doctor wanted.
I'm close to calling Dr. F who is the director of the City of Hope, and who a friend of mine put me in touch with. At this point, all that would happen is Dr. SF would get a slap on the wrist and I'm not sure I want to do that yet.
Meanwhile, Dr. BB needs me in his offices for an entire week, which is going to throw off scheduling the appointment with Dr. DW. I may just cancel the latter as I'm starting to get doctor fatigue...but perhaps I'd better do it anyway. I'm continuing to think of BB's treatment as something I should do. The way I look at it, there are three potential cures: (1) BB's program actually works, (2) a novel new drug comes out that, in combination with other drugs or on its own, prevents Myeloma, or (3) allogeneic transplants improve in safety. It seems like I can pursue #1 without affecting #2 or #3...I guess the only downside would be the effects of all the chemo and whether or not so many drugs actually hurt my body (potentially causing another kind of cancer, for example). Hard to say.
Spending two weeks away from home in the coming weeks is going to be challenging for the kids, especially Parker. I'm wondering if sometime soon we need to tell her something is going on...I'm hoping we can put that off, still.
We got a call at home today, informing me that my appointment tomorrow has been unceremoniously moved. They didn't bother asking me to see if it was okay, and of course it's not. So we've had this on the calendar for more than a month, and on 18 hours' notice they figure they can just call and change it? Sorry. I moved my whole day around tomorrow to accommodate the appointment.
I called and voiced my displeasure. I can't really have blood drawn right now anyway because I'm getting over a bad cold and that will cause a normal immunoglobin response in my blood, which will throw off all their tests. So for now, we're going to try for the 13th...which is later than either I or the doctor wanted.
I'm close to calling Dr. F who is the director of the City of Hope, and who a friend of mine put me in touch with. At this point, all that would happen is Dr. SF would get a slap on the wrist and I'm not sure I want to do that yet.
Meanwhile, Dr. BB needs me in his offices for an entire week, which is going to throw off scheduling the appointment with Dr. DW. I may just cancel the latter as I'm starting to get doctor fatigue...but perhaps I'd better do it anyway. I'm continuing to think of BB's treatment as something I should do. The way I look at it, there are three potential cures: (1) BB's program actually works, (2) a novel new drug comes out that, in combination with other drugs or on its own, prevents Myeloma, or (3) allogeneic transplants improve in safety. It seems like I can pursue #1 without affecting #2 or #3...I guess the only downside would be the effects of all the chemo and whether or not so many drugs actually hurt my body (potentially causing another kind of cancer, for example). Hard to say.
Spending two weeks away from home in the coming weeks is going to be challenging for the kids, especially Parker. I'm wondering if sometime soon we need to tell her something is going on...I'm hoping we can put that off, still.
Sunday, December 28, 2008
New resolve
I've been doing more reading on Dr. BB's work (almost slipped up and used his full name...although who am I kidding, anybody who does a google search on Myeloma will probably know who this is). I came across a person that went through his program recently and I've reached out to correspond with her. I don't know how old she is, what strain of the disease she has/had, etc. but one of the things that struck me was that in her first consult with one of BB's team, that doctor said "there's a 50 percent chance I can cure you." They really believe that it's possible.
I still question why nobody else does. I went back and listened to the recording of my diagnosis where Dr. SH first discusses what to do and I'm struck now by what I've learned and what I would do differently than what Dr. SH initially recommended (in fairness to him, his comments were before the big hematological conference that happened in San Francisco at the beginning of December). One of SH's comments was that nobody can repilicate BB's data and he is accused of selection bias in his patients. But frankly, selection bias doesn't bother me so long as I would be one of the well-responding patients that he selects to prove his protocol works.
I will be visiting him the last week of January and I'll ask him directly why others don't believe in his protocol. Although I note that some other centers, notably one in Utah, do believe in the tandem transplant concept.
I continue to feel that given my age, this may be the way to go. We'll see.
In any case, today is a little more hopeful than yesterday, which is welcome.
I still question why nobody else does. I went back and listened to the recording of my diagnosis where Dr. SH first discusses what to do and I'm struck now by what I've learned and what I would do differently than what Dr. SH initially recommended (in fairness to him, his comments were before the big hematological conference that happened in San Francisco at the beginning of December). One of SH's comments was that nobody can repilicate BB's data and he is accused of selection bias in his patients. But frankly, selection bias doesn't bother me so long as I would be one of the well-responding patients that he selects to prove his protocol works.
I will be visiting him the last week of January and I'll ask him directly why others don't believe in his protocol. Although I note that some other centers, notably one in Utah, do believe in the tandem transplant concept.
I continue to feel that given my age, this may be the way to go. We'll see.
In any case, today is a little more hopeful than yesterday, which is welcome.
Saturday, December 27, 2008
A lousy day
Today's been rough. I've been reading a few other blogs from people that have gone through what I'm about to go through and they are universally pretty depressing. I gather from some of these that perhaps I'm stronger than I know because these other patients seem overwhelmed, unable to have done their research, perhaps not getting the same quality care, etc. But it's still disheartening.
Between these blogs and my conversation with Kathy, I'm concerned that life as I know it is over, even if I'm able to beat the cancer. I'll be sick all the time because my immune system will never again work. I'll have terrible side effects from the dexamethazone that may impact my job performance, the way I treat my family, etc. Food will lose its taste. These are all the "quality of life" issues that anti-SCT advocates mention. And yet I do believe that without an SCT, my life will be over in the next few years.
I try to be strong. But all I can think of is that I don't deserve to have to go through this.
Between these blogs and my conversation with Kathy, I'm concerned that life as I know it is over, even if I'm able to beat the cancer. I'll be sick all the time because my immune system will never again work. I'll have terrible side effects from the dexamethazone that may impact my job performance, the way I treat my family, etc. Food will lose its taste. These are all the "quality of life" issues that anti-SCT advocates mention. And yet I do believe that without an SCT, my life will be over in the next few years.
I try to be strong. But all I can think of is that I don't deserve to have to go through this.
Friday, December 26, 2008
A few more things before my return to City of Hope...
Well, I've come a long way in terms of my knowledge of the disease since the last time I met with Dr. SF. He told me that on some level (not including biochemistry) I would come to know as much as he does and I feel like I am on my way at least.
Some other odds and ends:
* I spoke with my friend RH's dad DH, who had an allogeneic transplant six years ago. He didn't know why his doctor, Dr. RC, had gone in that direction and seemingly wasn't aware of how risky they are. He took a much more hands off approach to his treatment decisions than I am taking, that's for sure. I want to seek out Dr. RC for a quick phone call to learn why he went that route. Does he know something about allogeneic transplants that the rest of us don't?
* I've begun corresponding with WT, the friend of my good friend Dr. BM's father, who had a SCT for MM ten years ago and is doing well. Like DH, he was a bit more hands off than me in treatment research but he's been very helpful in telling me how he responded to the SCT and what to look for.
* I've also begun corresponding with an American living in Italy who is still in Stage 1 but who has avoided all these aggressive treatments in favor of taking curcumin, otherwise known as the spice turmeric, in capsule form and that has stabilized her disease. I wonder if there is any merit to this? This is something to discuss with the integrative medicine specialist at Sloan Kettering.
* I've determined the remaining doctors to see are: Dr. KA, Dr. SJ, Dr. DW, Dr. BB, and potentially Dr. MG. I'll also have a phone call with Dr. BD. That will mean 9 doctors in total, which is a lot but at least I kept it in the single digits. Oh...I guess if I have the phone call with Dr. RC that makes it an even ten.
* Dr. BB requires a full week in his center where they insist on doing all new tests. It can't hurt to have another bone marrow, particularly since he agreed to sedate me for it. PinnacleCare was able to reduce the stay there to four days. I can catch Dr. DW on the way back since there are no direct flights to where Dr. BB is anyway, and I have to fly through where Dr. DW is. That trip will be the last week in January -- which means I'll need to reschedule my meeting with Kathy Giusti. A pity.
* I have an appointment with Dr. SJ on February 23rd -- the earliest I could get in to see him as he is out of the country the entire month of January. While on the east coast, I'll see Dr. KA as well. If I determine it's worth it, I can fly back through Minnesota and see Dr. MG. Unfortunately, he won't take a consultation by phone. I'll also try to meet with Kathy Giusti while back east.
* Most of these are consultations, not a full blown exam. The only exception would be Dr. BB since he has so much proprietary testing that can be done down there.
* My stupid insurance carrier is saying they will only pay for one second opinion. Now, I don't mind going out of pocket for some of these, but considering I have two types of doctors that I need to work with -- an oncologist and a stem-cell specialist -- it seems ridiculous for them to limit me. Additionally, I'm concerned that they may take my Dr. SF as a second opinion, or worse yet what would probably be a $300 consult with Dr. ML as a second opinion, leaving me exposed on $30,000 worth of stuff with Dr. BB (a PET scan, an MRI, the blood work, the bone marrow, the gene workup, etc.). I've hired a company called CoPay Solutions, who along with PinnacleCare will try to fight that battle.
*I've done more research on Dr. BB's treatment protocol, and have called Dr. SF's office to remind him to pull up the information so we can discuss it. Essentially it involves the following:
(1) Intensive induction therapy including a battery of SEVEN drugs: velcade, thalidomide (which we'd replace with revlimid, i think), dex, plus PACE (cisplatin, adriamycin, cyclophosphamide and etoposide -- all chemotherapy, I believe) for one cycle -- only one month, I think.
(2) stem cell harvesting, following by high-dose chemo with melphalan followed by autologous stem cell transplant
(3) recovery period, during which "consolidation" drugs are given -- formerly thalidomide and dex but probably revlamid and dex.
(4) second autologous stem cell transplant 2-3 months later (again preceded by high-dose melphalan)
(5) maintenance therapy, consisting of weekly velcade plus DTPACE (or DRPACE in our case) for the first year, monthly velcade plus thal-dex (or rev-dex in my case perhaps) for the second year, and then thal-dex or rev-dex alone for year three.
This sounds unbelievably aggressive. Dr. BB's approach is to throw literally everything we know at the disease because it has many ways of replicating and each solution only blocks part of it -- throwing everything at it cuts off almost all ways of it coming back,
My questions related to this approach, which I'll ask Dr. BB directly, are:
(1) The PACE drugs have been shown to be less effective than thal-dex, let alone rev-dex, let alone velcade plus rev dex. Is it possible that the benefit of the PACE drugs has been superseded by these others?
(2) Have two SCT's been shown to be better than one, provided complete remission is achieved after one?
(3) Same issue with PACE for maintenance, and should rev-dex be used instead.
The other thing to point out is that BB uses velcade plus DTPACE for only one cycle in his Total Therapy 3 protocol (the one outlined above) to reduce toxicity of the treatment. But others suggest VRD alone for four cycles. Which is better, and why?
That's all I've got for now, folks. Happy Holidays. I'll go back in next Tuesday, and I'll report anything of note in the meantime.
Some other odds and ends:
* I spoke with my friend RH's dad DH, who had an allogeneic transplant six years ago. He didn't know why his doctor, Dr. RC, had gone in that direction and seemingly wasn't aware of how risky they are. He took a much more hands off approach to his treatment decisions than I am taking, that's for sure. I want to seek out Dr. RC for a quick phone call to learn why he went that route. Does he know something about allogeneic transplants that the rest of us don't?
* I've begun corresponding with WT, the friend of my good friend Dr. BM's father, who had a SCT for MM ten years ago and is doing well. Like DH, he was a bit more hands off than me in treatment research but he's been very helpful in telling me how he responded to the SCT and what to look for.
* I've also begun corresponding with an American living in Italy who is still in Stage 1 but who has avoided all these aggressive treatments in favor of taking curcumin, otherwise known as the spice turmeric, in capsule form and that has stabilized her disease. I wonder if there is any merit to this? This is something to discuss with the integrative medicine specialist at Sloan Kettering.
* I've determined the remaining doctors to see are: Dr. KA, Dr. SJ, Dr. DW, Dr. BB, and potentially Dr. MG. I'll also have a phone call with Dr. BD. That will mean 9 doctors in total, which is a lot but at least I kept it in the single digits. Oh...I guess if I have the phone call with Dr. RC that makes it an even ten.
* Dr. BB requires a full week in his center where they insist on doing all new tests. It can't hurt to have another bone marrow, particularly since he agreed to sedate me for it. PinnacleCare was able to reduce the stay there to four days. I can catch Dr. DW on the way back since there are no direct flights to where Dr. BB is anyway, and I have to fly through where Dr. DW is. That trip will be the last week in January -- which means I'll need to reschedule my meeting with Kathy Giusti. A pity.
* I have an appointment with Dr. SJ on February 23rd -- the earliest I could get in to see him as he is out of the country the entire month of January. While on the east coast, I'll see Dr. KA as well. If I determine it's worth it, I can fly back through Minnesota and see Dr. MG. Unfortunately, he won't take a consultation by phone. I'll also try to meet with Kathy Giusti while back east.
* Most of these are consultations, not a full blown exam. The only exception would be Dr. BB since he has so much proprietary testing that can be done down there.
* My stupid insurance carrier is saying they will only pay for one second opinion. Now, I don't mind going out of pocket for some of these, but considering I have two types of doctors that I need to work with -- an oncologist and a stem-cell specialist -- it seems ridiculous for them to limit me. Additionally, I'm concerned that they may take my Dr. SF as a second opinion, or worse yet what would probably be a $300 consult with Dr. ML as a second opinion, leaving me exposed on $30,000 worth of stuff with Dr. BB (a PET scan, an MRI, the blood work, the bone marrow, the gene workup, etc.). I've hired a company called CoPay Solutions, who along with PinnacleCare will try to fight that battle.
*I've done more research on Dr. BB's treatment protocol, and have called Dr. SF's office to remind him to pull up the information so we can discuss it. Essentially it involves the following:
(1) Intensive induction therapy including a battery of SEVEN drugs: velcade, thalidomide (which we'd replace with revlimid, i think), dex, plus PACE (cisplatin, adriamycin, cyclophosphamide and etoposide -- all chemotherapy, I believe) for one cycle -- only one month, I think.
(2) stem cell harvesting, following by high-dose chemo with melphalan followed by autologous stem cell transplant
(3) recovery period, during which "consolidation" drugs are given -- formerly thalidomide and dex but probably revlamid and dex.
(4) second autologous stem cell transplant 2-3 months later (again preceded by high-dose melphalan)
(5) maintenance therapy, consisting of weekly velcade plus DTPACE (or DRPACE in our case) for the first year, monthly velcade plus thal-dex (or rev-dex in my case perhaps) for the second year, and then thal-dex or rev-dex alone for year three.
This sounds unbelievably aggressive. Dr. BB's approach is to throw literally everything we know at the disease because it has many ways of replicating and each solution only blocks part of it -- throwing everything at it cuts off almost all ways of it coming back,
My questions related to this approach, which I'll ask Dr. BB directly, are:
(1) The PACE drugs have been shown to be less effective than thal-dex, let alone rev-dex, let alone velcade plus rev dex. Is it possible that the benefit of the PACE drugs has been superseded by these others?
(2) Have two SCT's been shown to be better than one, provided complete remission is achieved after one?
(3) Same issue with PACE for maintenance, and should rev-dex be used instead.
The other thing to point out is that BB uses velcade plus DTPACE for only one cycle in his Total Therapy 3 protocol (the one outlined above) to reduce toxicity of the treatment. But others suggest VRD alone for four cycles. Which is better, and why?
That's all I've got for now, folks. Happy Holidays. I'll go back in next Tuesday, and I'll report anything of note in the meantime.
Casting the net wide...or, crackpots and kooks and quacks, oh my!
I am a big fan of Western medicine.
At the same time, I do believe that the mind and body are one, and that having a positive attitude will translate to a stronger body with which to fight this disease and contend with the side-effects of it.
I also don't want to become close-minded, so I've decided to explore alternative therapies. Obviously, staying reasonably fit and eating well will be of benefit regardless of anything else (although I can't exercise as extensively as I'd like given the bone situation). So I've looked into a couple of things here and there.
In particular, I looked into a group in Canada that suggests all illnesses are the results of body chemistry not working as it should. This group takes some of my blood, runs a massive protein analysis separating it into six million different proteins, compares that against an ideal profile, and then figures out how many things are wrong with me, from a couple of hundred to several hundred thousand. They then create a "neutraceutical" cocktail that I take which will correct those things at the amino acid level.
This organization is highly controversial. And yet Dr. BM's father, RM, had a friend JC who went to them for cataracts. He took the pills, the cataracts went away, and his eye doctor said he's never seen anything like it. So there's at least one case study of it working. Like myself, RM is a natural skeptic and a rationalist, so I went into this with a grain of salt.
I contacted the group and set up a call with the CEO, who called me last week. It started out fine, with him explaining how his treatment worked on myeloma, how it was a complement to traditional treatment, how people on his program that went through traditional treatment did better than those not on his program, etc. Then it took a turn for the strange when he told me unequivocally to stop taking Lipitor, and that Lipitor might have caused my cancer, and that Lipitor was being sued for causing cancer.
Sure enough, if one searches the web, one can find one or two obscure references to such a possibility -- but the medical establishment certainly doesn't accept it as a legitimate issue. This leads to the whole conspiracy theory about Big Pharma and Big Medicine working against alternative treatments, ignoring side effects in the interests of profits, etc. I'm not sure I'm prepared to sign up for that one.
I've asked PinnacleCare to do some research on this outfit. One would hope they have clinical studies to back up their claims -- although it's almost a given that they don't. As I said, they are controversial and were torn a new one by an investigative reporter in Canada on Canadian TV a few years ago (the group dismisses this as being without journalistic integrity and driven by a few crazies that have it in for them), and they also don't have any doctors on staff. I'm very suspicious...and I'd rule them out except for the fact that JC did have his cataracts cured. Granted, less was on the line in that situation than in my own.
The mother-in-law of a friend down the street happens to be the head of integrative medicine at Sloan Kettering in New York. This is great, as I can ask her advice about this group in particular and then in general get suggestions on how to help manage my myeloma. So that's a conversation I'm eager to have after the holidays.
At the same time, I do believe that the mind and body are one, and that having a positive attitude will translate to a stronger body with which to fight this disease and contend with the side-effects of it.
I also don't want to become close-minded, so I've decided to explore alternative therapies. Obviously, staying reasonably fit and eating well will be of benefit regardless of anything else (although I can't exercise as extensively as I'd like given the bone situation). So I've looked into a couple of things here and there.
In particular, I looked into a group in Canada that suggests all illnesses are the results of body chemistry not working as it should. This group takes some of my blood, runs a massive protein analysis separating it into six million different proteins, compares that against an ideal profile, and then figures out how many things are wrong with me, from a couple of hundred to several hundred thousand. They then create a "neutraceutical" cocktail that I take which will correct those things at the amino acid level.
This organization is highly controversial. And yet Dr. BM's father, RM, had a friend JC who went to them for cataracts. He took the pills, the cataracts went away, and his eye doctor said he's never seen anything like it. So there's at least one case study of it working. Like myself, RM is a natural skeptic and a rationalist, so I went into this with a grain of salt.
I contacted the group and set up a call with the CEO, who called me last week. It started out fine, with him explaining how his treatment worked on myeloma, how it was a complement to traditional treatment, how people on his program that went through traditional treatment did better than those not on his program, etc. Then it took a turn for the strange when he told me unequivocally to stop taking Lipitor, and that Lipitor might have caused my cancer, and that Lipitor was being sued for causing cancer.
Sure enough, if one searches the web, one can find one or two obscure references to such a possibility -- but the medical establishment certainly doesn't accept it as a legitimate issue. This leads to the whole conspiracy theory about Big Pharma and Big Medicine working against alternative treatments, ignoring side effects in the interests of profits, etc. I'm not sure I'm prepared to sign up for that one.
I've asked PinnacleCare to do some research on this outfit. One would hope they have clinical studies to back up their claims -- although it's almost a given that they don't. As I said, they are controversial and were torn a new one by an investigative reporter in Canada on Canadian TV a few years ago (the group dismisses this as being without journalistic integrity and driven by a few crazies that have it in for them), and they also don't have any doctors on staff. I'm very suspicious...and I'd rule them out except for the fact that JC did have his cataracts cured. Granted, less was on the line in that situation than in my own.
The mother-in-law of a friend down the street happens to be the head of integrative medicine at Sloan Kettering in New York. This is great, as I can ask her advice about this group in particular and then in general get suggestions on how to help manage my myeloma. So that's a conversation I'm eager to have after the holidays.
The MMRF and Kathy Giusti
I'll use a full name, not initials, for this remarkable woman.
The previous day, before I was going to see Dr. ML, PinnacleCare had connected me with the COO of the Multiple Myeloma Research Foundation, a non-profit dedicated to advancing research (as its name implies). Among its many achievements, I soon learned, was formation of the Multiple Myeloma Research Consortium, a group of 15 affiliated cancer centers (including City of Hope) that are linked together in clinical trials and research-sharing. Through the work of the MMRC and MMRF, work on Velcade was significant advanced.
I had been allowed to participate in a conference call wherein Dr. SJ, one of the people I was intent on seeing, would be the keynote speaker and there would be a summary of the reports given at the just-concluded hematological conference that seemingly every oncologist in the myeloma field had recently attended.
During the conference call, the woman who founded this organization was introduced. Her name is Kathy Giusti and she, like myself, is a graduate of the Harvard Business School. She was diagnosed with Multiple Myeloma at the age of 36, about 12-13 years ago. Hers was smoldering for about eight years before it progressed to Stage 1, where mine is now. She left her career in the pharmaceutical industry and formed the MMRF, which she has led since its inception. It was mentioned that she was going to be profiled that evening on CNN in a piece on several Harvard Business School graduates of prominence, which she noted humbly was great exposure for the foundation and the work they were doing.
The call was very uplifting, and focused on the development of several next generation drugs (a better version of Revlimid and a better version of Velcade are both in Phase III Clinical Trials and likely to be approved in the next 2-3 years), as well as two entirely new classes of drugs -- one is called HDAC inhibitors which block gene expression and ultimately cell growth, and the other have to do with interleukin. Both are promising, if a bit farther out.
The best part of the call was Dr. SJ's "keynote" section where he discussed the research and also his personal belief that there will be a cure found in the lifetime of newly diagnosed patients. This, in stark contrast to what we heard from Dr. ML the day before, was what I needed to hear at that point in time. I'm not being a Pollyanna about this, obviously, but there's a spectrum of opinion and it was good to hear from somebody on the optimistic end of that. I made a mental note that no matter what, I had to consult with Dr. SJ.
Shortly after the call ended, Kathy Giusti called me. She'd been given my information by her COO, with whom I'd spoken a couple of days before. She and I spoke for ninety minutes, during which time she told me all about her own situation. She has a potentially much worse strain of the disease than I do -- she has chromosome 13 deletion and 4;14 translocation (a couple of genes are mixed up), both of which are indicative of much worse outcomes. The fact that she was still around was a good sign. She went through SCT about 18 months ago, so I asked her about that. She told me there are a lot of things that doctors won't tell you: (a) the side-effects of the drugs, particularly dexamethazone, are much worse than they let on, and (b) one's immune system is never the same again. She gets sick all the time, she told me.
This is a pity...but given the alternative, I'll take the treatment. Nonetheless, it did introduce a new question and consideration: what is the post-transplant "maintenance" therapy to be? Could it be something relatively mild, as in Kathy's case (she takes 10mg of Revlamid daily), or would I be expected to stay on Velcade and Revlamid and Dex for three years, as is the case in Dr. BB's protocol. Kathy knew all these doctors and had good things to say about Dr. SF at City of Hope, Dr. KA (who PinnacleCare suggested I see) and Dr. SJ, obviously. She seemed to indicate that some doctors (among them KA) were inclined to look at novel drugs rather than transplant as the right approach, and that a single transplant (were I to go that route) would be considered aggressive treatment. She didn't advise me against this at all...it was more to draw contrast against the tandem transplant treatment.
We discussed meeting when she was next in Los Angeles (the week of January 26th), or if not, then when I am in New York to see Dr. SJ.
Although I was saddened to hear about the realities of side-effects and the notion of maintenance therapy being a much bigger deal than I had first envisioned, both the conference call and the ensuing conversation with Kathy were great confidence builders that I can and will beat this.
I didn't watch the CNN special, but I had at least three people including my assistant speak with me the next day about it and this remarkable woman Kathy Giusti -- I was very proud to tell them I'd spent ninety minutes on the phone with her the previous day.
If nothing else, I am confident I am in touch with and in the case of the very best and brightest in the field, and that's an important confidence builder.
The previous day, before I was going to see Dr. ML, PinnacleCare had connected me with the COO of the Multiple Myeloma Research Foundation, a non-profit dedicated to advancing research (as its name implies). Among its many achievements, I soon learned, was formation of the Multiple Myeloma Research Consortium, a group of 15 affiliated cancer centers (including City of Hope) that are linked together in clinical trials and research-sharing. Through the work of the MMRC and MMRF, work on Velcade was significant advanced.
I had been allowed to participate in a conference call wherein Dr. SJ, one of the people I was intent on seeing, would be the keynote speaker and there would be a summary of the reports given at the just-concluded hematological conference that seemingly every oncologist in the myeloma field had recently attended.
During the conference call, the woman who founded this organization was introduced. Her name is Kathy Giusti and she, like myself, is a graduate of the Harvard Business School. She was diagnosed with Multiple Myeloma at the age of 36, about 12-13 years ago. Hers was smoldering for about eight years before it progressed to Stage 1, where mine is now. She left her career in the pharmaceutical industry and formed the MMRF, which she has led since its inception. It was mentioned that she was going to be profiled that evening on CNN in a piece on several Harvard Business School graduates of prominence, which she noted humbly was great exposure for the foundation and the work they were doing.
The call was very uplifting, and focused on the development of several next generation drugs (a better version of Revlimid and a better version of Velcade are both in Phase III Clinical Trials and likely to be approved in the next 2-3 years), as well as two entirely new classes of drugs -- one is called HDAC inhibitors which block gene expression and ultimately cell growth, and the other have to do with interleukin. Both are promising, if a bit farther out.
The best part of the call was Dr. SJ's "keynote" section where he discussed the research and also his personal belief that there will be a cure found in the lifetime of newly diagnosed patients. This, in stark contrast to what we heard from Dr. ML the day before, was what I needed to hear at that point in time. I'm not being a Pollyanna about this, obviously, but there's a spectrum of opinion and it was good to hear from somebody on the optimistic end of that. I made a mental note that no matter what, I had to consult with Dr. SJ.
Shortly after the call ended, Kathy Giusti called me. She'd been given my information by her COO, with whom I'd spoken a couple of days before. She and I spoke for ninety minutes, during which time she told me all about her own situation. She has a potentially much worse strain of the disease than I do -- she has chromosome 13 deletion and 4;14 translocation (a couple of genes are mixed up), both of which are indicative of much worse outcomes. The fact that she was still around was a good sign. She went through SCT about 18 months ago, so I asked her about that. She told me there are a lot of things that doctors won't tell you: (a) the side-effects of the drugs, particularly dexamethazone, are much worse than they let on, and (b) one's immune system is never the same again. She gets sick all the time, she told me.
This is a pity...but given the alternative, I'll take the treatment. Nonetheless, it did introduce a new question and consideration: what is the post-transplant "maintenance" therapy to be? Could it be something relatively mild, as in Kathy's case (she takes 10mg of Revlamid daily), or would I be expected to stay on Velcade and Revlamid and Dex for three years, as is the case in Dr. BB's protocol. Kathy knew all these doctors and had good things to say about Dr. SF at City of Hope, Dr. KA (who PinnacleCare suggested I see) and Dr. SJ, obviously. She seemed to indicate that some doctors (among them KA) were inclined to look at novel drugs rather than transplant as the right approach, and that a single transplant (were I to go that route) would be considered aggressive treatment. She didn't advise me against this at all...it was more to draw contrast against the tandem transplant treatment.
We discussed meeting when she was next in Los Angeles (the week of January 26th), or if not, then when I am in New York to see Dr. SJ.
Although I was saddened to hear about the realities of side-effects and the notion of maintenance therapy being a much bigger deal than I had first envisioned, both the conference call and the ensuing conversation with Kathy were great confidence builders that I can and will beat this.
I didn't watch the CNN special, but I had at least three people including my assistant speak with me the next day about it and this remarkable woman Kathy Giusti -- I was very proud to tell them I'd spent ninety minutes on the phone with her the previous day.
If nothing else, I am confident I am in touch with and in the case of the very best and brightest in the field, and that's an important confidence builder.
Research and a visit with Dr. ML
Over the following several days, I did some of my own reading and research, and asked PinnacleCare to do the same. They pulled together statistics on transplant successes at various hospitals, confirming for me that allogeneic transplants were too dangerous at this time. They began pulling together information on clinical trials. We discussed scheduling several visits out of state, given that I was leaning towards New York, Boston, Houston, Little Rock, and Rochester, MN. I had to consider how I was going to route all of this and contend with the needs of my job.
I had, unfortunately, not had the foresight to sign up for long-term disability insurance so my time out of office for this disease would be limited to six months. Here's hoping that won't be an issue. When I get this into remission, I'll be able to sign up for LTD insurance.
I began to refine the list of questions I was going to ask the doctors with whom I met. These now revolved around what kind of up-front therapy would be best, and what the harm in a "kitchen sink" approach would be, benefits of different types of transplants, some details around side-effects and what I'd be going through, etc.
The first doctor that I saw with this new list of questions was Dr. ML. I'd be told by one friend of a friend that he was part of an inner circle at a given hospital and that those doctors were "in the know" and others affiliated with that hospital but not in that group weren't as up-to-date. This conflicted with what another person had told me about these doctors.
At any rate, I went in with an open mind. But my meeting with ML was very disheartening. His resident first advised that I go on something immediately to prevent spinal compression, which is a particularly nasty thing that can happen where the myeloma eats up vertebrae and causes the spine to collapse like an accordion. Dr. ML advised that depending on which of the two staging systems for the disease was considered, I was actually Stage 2, not Stage 1. He said that were I in his care, he would start treatment immediately. I didn't want to hear either of these things.
Dr. ML didn't seem as up on combination therapy as some of the other doctors, and this was on the heels of a huge hematology conference that was happening. He suggested that the convenience of not being near a doctor's office was a factor in determine whether or not to use Velcade. I suppose that's true to an extent, but it also indicates that he either is (a) not confident in the superiority of a regime that includes Velcade, or (b) isn't aware of the trials that demonstrate same. In any case, I learned a few other key things from him:
* Myeloma can develop resistance to Velcade, but a new form of Velcade will come out that will work, so there's no harm in throwing the kitchen sink.
* Early transplant (meaning right after induction) has been shown to be more effective than late transplant (after symptoms recur) in prolonging life expectancy.
* Part of the reason that transplants can't be done every few years is that the use of some of these drugs inhibits the ability to harvest stem cells. I asked why not harvest for multiple transplants now, and he indicated that storage space was a factor. Hmm. Or, rather, hrumph.
* I was told it was a challenging goal to be alive to see Parker's wedding. That wasn't something I wanted to hear...it certainly wasn't on the optimistic end of the spectrum.
* Since it was going so well, I decided to ask how one dies from this. I had assumed it would be total renal failure, but instead I was told that it would be an infection that I wouldn't be able to get rid of. Presumably that would mean escalating fever until I slipped into a coma and that would be that. Doesn't sound great but it sounds better than total organ necrosis, or falling feet-first into a mechanical threshing machine.
That night was a very hard night for both Jill and me.
I had, unfortunately, not had the foresight to sign up for long-term disability insurance so my time out of office for this disease would be limited to six months. Here's hoping that won't be an issue. When I get this into remission, I'll be able to sign up for LTD insurance.
I began to refine the list of questions I was going to ask the doctors with whom I met. These now revolved around what kind of up-front therapy would be best, and what the harm in a "kitchen sink" approach would be, benefits of different types of transplants, some details around side-effects and what I'd be going through, etc.
The first doctor that I saw with this new list of questions was Dr. ML. I'd be told by one friend of a friend that he was part of an inner circle at a given hospital and that those doctors were "in the know" and others affiliated with that hospital but not in that group weren't as up-to-date. This conflicted with what another person had told me about these doctors.
At any rate, I went in with an open mind. But my meeting with ML was very disheartening. His resident first advised that I go on something immediately to prevent spinal compression, which is a particularly nasty thing that can happen where the myeloma eats up vertebrae and causes the spine to collapse like an accordion. Dr. ML advised that depending on which of the two staging systems for the disease was considered, I was actually Stage 2, not Stage 1. He said that were I in his care, he would start treatment immediately. I didn't want to hear either of these things.
Dr. ML didn't seem as up on combination therapy as some of the other doctors, and this was on the heels of a huge hematology conference that was happening. He suggested that the convenience of not being near a doctor's office was a factor in determine whether or not to use Velcade. I suppose that's true to an extent, but it also indicates that he either is (a) not confident in the superiority of a regime that includes Velcade, or (b) isn't aware of the trials that demonstrate same. In any case, I learned a few other key things from him:
* Myeloma can develop resistance to Velcade, but a new form of Velcade will come out that will work, so there's no harm in throwing the kitchen sink.
* Early transplant (meaning right after induction) has been shown to be more effective than late transplant (after symptoms recur) in prolonging life expectancy.
* Part of the reason that transplants can't be done every few years is that the use of some of these drugs inhibits the ability to harvest stem cells. I asked why not harvest for multiple transplants now, and he indicated that storage space was a factor. Hmm. Or, rather, hrumph.
* I was told it was a challenging goal to be alive to see Parker's wedding. That wasn't something I wanted to hear...it certainly wasn't on the optimistic end of the spectrum.
* Since it was going so well, I decided to ask how one dies from this. I had assumed it would be total renal failure, but instead I was told that it would be an infection that I wouldn't be able to get rid of. Presumably that would mean escalating fever until I slipped into a coma and that would be that. Doesn't sound great but it sounds better than total organ necrosis, or falling feet-first into a mechanical threshing machine.
That night was a very hard night for both Jill and me.
Saturday, December 20, 2008
Doctor proliferation...
Since there's no cure for MM, and there have been a lot of new drugs developed in the last 10 years to help combat it, there are a myriad of opinions on what protocol to follow. I want to talk with at least one doctor favoring each of these major protocols: no transplant, single autologous transplant, tandem autologous transplants, allogeneic transplants. That meant at least Dr. JB, Dr. BB, Dr. RC and potentially someone at Stanford, where Dr. SH had said some allogeneic work was being done.
Add to that that Dr. SH recommended specifically that I talk with Dr. BB, Dr. MG, and potentially Dr. JB as well as Dr. SF.
My boss' boss, whom I consider a friend and whom I decided to tell about my condition, immediately called his friend who is a prominent oncologist (Dr. DA) for a different type of cancer. He suggested I talk with Dr. BD and provided his name for a referral, so I knew I would talk with Dr. BD.
Another friend who is an accomplished scientist and works a great deal with the National Institute of Health told me Dr. ML was doing some interesting work.
Another friend who recently had a neighbor go through a Myeloma stem cell transplant said only certain doctors were in the know and Dr. ML was among them. So I figured Dr. ML was now added to the list.
Another work colleague who beat cancer 20 years ago called his guy at Sloan Kettering, and that person gave me several names: Dr. KA, Dr. DR, Dr. JB (some overlap at last) and Dr. SJ.
My good friend Dr. BM, not an oncologist by the guy who originally told me life expectancy was measured in 3-5 years and whose father's RM had a friend that 10 years ago went through a transplant and was still alive, told his father and RM told me to call his good friend, a prominent oncologist in another cancer field (Dr. SH, but not MY doctor SH, so we'll call him Dr. SH2). And THAT doctor was going to recommend a guy that turns out to be Dr. SH's partner, but he said Dr. SH was fantastic. And he said Dr. SF was "The Guy" to see, and that I shouldn't go anyplace other than City of Hope. This was all very reassuring. He also told me that two other doctors I was going to see (neither of whom I was planning on doing treatment with, both of whom are on the list below but both of whom shall remain nameless) were "B" players rather than "A" players. SH and SF were both "A" players so this made me feel good.
Lastly, there was PinnacleCare who suggested Dr. KA (more overlap!), Dr. BB (overlap again!), Dr. WD, Dr. V (don't know his first name) and Dr. DM.
So now, by my account:
Dr. SH (seen already, likely to be my primary guy)
Dr. SF (seen already, likely to be my transplant specialist)
Dr. BB (tandem guy)
Dr. KA (multiple suggestions, and at a very prominent cancer center)
Dr. SJ (an optimist and highly recommended, though PinnacleCare didn't know of him)
Dr. ML (single transplant guy, "in the know" at a local hospital)
Dr. BD (single transplant guy, came up with the staging system for the disease)
Dr. RC (allogeneic transplant)
Dr. MG (Dr. SH strongly suggested)
Dr. DM (PinnacleCare suggested, and at a very prominent cancer center)
Dr. V
Dr. WD
TWELVE DOCTORS, and that's assuming I am ruling out Dr. JB...which I've done at this point because I don't want to be on meds for the rest of my life, and because he's a bit of an outlier. I want to eradicate this disease...or keep it out of me for many years. The meds will just keep it at bay...I'm a believer in the transplant at this point. The question is, what kind...and how many.
And it will take that many doctors for me to feel like I've bottomed this all out.
Add to that that Dr. SH recommended specifically that I talk with Dr. BB, Dr. MG, and potentially Dr. JB as well as Dr. SF.
My boss' boss, whom I consider a friend and whom I decided to tell about my condition, immediately called his friend who is a prominent oncologist (Dr. DA) for a different type of cancer. He suggested I talk with Dr. BD and provided his name for a referral, so I knew I would talk with Dr. BD.
Another friend who is an accomplished scientist and works a great deal with the National Institute of Health told me Dr. ML was doing some interesting work.
Another friend who recently had a neighbor go through a Myeloma stem cell transplant said only certain doctors were in the know and Dr. ML was among them. So I figured Dr. ML was now added to the list.
Another work colleague who beat cancer 20 years ago called his guy at Sloan Kettering, and that person gave me several names: Dr. KA, Dr. DR, Dr. JB (some overlap at last) and Dr. SJ.
My good friend Dr. BM, not an oncologist by the guy who originally told me life expectancy was measured in 3-5 years and whose father's RM had a friend that 10 years ago went through a transplant and was still alive, told his father and RM told me to call his good friend, a prominent oncologist in another cancer field (Dr. SH, but not MY doctor SH, so we'll call him Dr. SH2). And THAT doctor was going to recommend a guy that turns out to be Dr. SH's partner, but he said Dr. SH was fantastic. And he said Dr. SF was "The Guy" to see, and that I shouldn't go anyplace other than City of Hope. This was all very reassuring. He also told me that two other doctors I was going to see (neither of whom I was planning on doing treatment with, both of whom are on the list below but both of whom shall remain nameless) were "B" players rather than "A" players. SH and SF were both "A" players so this made me feel good.
Lastly, there was PinnacleCare who suggested Dr. KA (more overlap!), Dr. BB (overlap again!), Dr. WD, Dr. V (don't know his first name) and Dr. DM.
So now, by my account:
Dr. SH (seen already, likely to be my primary guy)
Dr. SF (seen already, likely to be my transplant specialist)
Dr. BB (tandem guy)
Dr. KA (multiple suggestions, and at a very prominent cancer center)
Dr. SJ (an optimist and highly recommended, though PinnacleCare didn't know of him)
Dr. ML (single transplant guy, "in the know" at a local hospital)
Dr. BD (single transplant guy, came up with the staging system for the disease)
Dr. RC (allogeneic transplant)
Dr. MG (Dr. SH strongly suggested)
Dr. DM (PinnacleCare suggested, and at a very prominent cancer center)
Dr. V
Dr. WD
TWELVE DOCTORS, and that's assuming I am ruling out Dr. JB...which I've done at this point because I don't want to be on meds for the rest of my life, and because he's a bit of an outlier. I want to eradicate this disease...or keep it out of me for many years. The meds will just keep it at bay...I'm a believer in the transplant at this point. The question is, what kind...and how many.
And it will take that many doctors for me to feel like I've bottomed this all out.
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