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.
Tuesday, December 30, 2008
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.
Friday, December 19, 2008
City of Hope, First Visit
A couple of weeks later, I went to Dr. SF at the City of Hope. City of Hope is one of the top cancer centers in the US -- it has a huge campus east of downtown Los Angeles (about 20 miles east) and is basically the size of a large hospital but it is dedicated entirely to cancer. Dr. SF is the head of the hematology and stem cell transplant programs and is a prominent researcher in blood malignancies.
Jill and I drove out there, which took forever so we had no lunch. When we arrived, we valet parked and checked in. My office had already worked with Dr. SH's office to ensure my records had been sent over to City of Hope, and to fill out registration information. Of course the latter hadn't arrived when I checked in, so that was a little bit of a snafu but not the end of the world.
We were assigned a lady to shuttle us through our appointments, which included a new patient orientation, more bloodwork (I picked the wrong disease, for someone who dreads needles), a meeting with a social worker (will she, I wonder, hand out a pamphlet entitled "So, you've decided to get incurable cancer...") and the good doctor himself.
I was brought to new patient orientation where a lovely young lady of dutch descent missed the fact that my name was misspelled. Jill pointed out that I was in their system incorrectly, with an extra "h" in my first name and an "e" at the end of my last name. Not unusual for this to happen, so the woman began fixing it so she could print out the proper name tag and charts.
It was at this point that I realized I didn't have my iPhone. The iPhone, for those who don't know, is a really nifty mobile phone made by Apple that has a lot of interesting applications. One such application, which I figured would come in handy, is the ability to record a conversation. I taped the diagnosis with Dr. Hamburg with this device, and wanted to do the same for my conversation with Dr. Forman. But I realized I'd left it in the car. Jill went off to retrieve that while I waited for my paperwork to be fixed.
City of Hope is filled with very caring people and generally speaking everybody is very warm. But it's a frightening place. It really brought home that I am going to be very sick soon. Even in going to Dr. SH's office, I saw a lot of people getting a lot of tests done for blood ailments but it wasn't the same as being in a room full of people being treated with chemo, missing all their hair, undergoing these frightening treatments in the hopes of staying alive...and now it was all around me.
It was taking a while to finish my paperwork, but Jill still wasn't back from getting the cell phone. Just then, my work cell phone (not the iPhone but a Blackberry that I carry with me) rang. It was Jill and she was beside herself. The valets couldn't find the car, then couldn't figure out how to open it, then left her unattended for 10 minutes, then finally found her and had to take her in a shuttle to a remote lot. She was getting very frustrated. Meanwhile, my little old lady guide was starting to get cranky. I had to hurry up to have bloodwork done so I could make the appointment with the social worker. I asked her to please be patient, but we had a schedule to keep. I was concerned because this place is huge and Jill knew where I'd been brought but didn't know where the lab was. But I had no choice, so I called Jill and told her I would meet her in the lab.
The lab was out through the lobby so I could see the valet stand. I asked the little old lady to please wait and I went outside to check on Jill, but she was nowhere to be found. I went back in, and was brought to the lab. I sat down, and rolled up my sleeve as another volunteer came in with the 8 or 9 test tubes that they had to fill (they have to take a lot of blood...again not my favorite thing to do in the world).
The volunteer checked my bracelet, which had my name and ID on it, and we both noticed that the name on my charts and on the bloodwork was misspelled (Nicholas Vandyke). I told her that they had changed it, and she told me there was no way their system would accommodate a space in my last name. Around this time, Jill showed up, hungry for bear but finally with the cell phone. She and I both tried to explain to the volunteer that they had to have the space in there, or at least be consistent, or my records couldn't be kept proper track of.
After a little arguing, and a vigorous jab with the needle, and about five minute of bleeding into tubes, we left. Then we were told that the social worker -- the whole reason we were being rushed through this process -- had gone for the day. By this point, I was pretty damn angry. I wasn't exactly happy to be there in the first place, and then the administrative screwups were starting to get to me. We were brought to a waiting room where we were told it would be about an hour before we could see the doctor (since they'd planned on me being with a social worker for 45 minutes).
Soon enough, a nurse brought me into the doctor's office and they did more tests, including blood pressure. I am mildly hypertensive...around 135 or 140 over around 85 or so. Dr. PZ, the non-alarmist who has been my physician for 20 years, has asked me to monitor it and I have, but he doesn't believe it's high enough to need medication. At any rate, in my frame of mind I knew it would be high. I told the woman, whose English wasn't very good, that I was about to break her machine. Sure enough, it registered 189 over 99. She asked "are you on medication for high blood pressure" and I said "no, it's just the administrative screwups have agitated me." She didn't seem to grasp this. She tested my other arm, and it was the same. She asked, AGAIN, if I was on medication for high blood pressure. At this point, I was going to need it!! I told her again the situation, and we were brought back out to wait some more.
In a few minutes, we were brought back in to see the doctor by a different nurse. She put us in one of the exam rooms. Sure enough, she asked if I was on meds for high blood pressure. I almost lost it. At this point, I was not feeling very good about the City of Hope. More like City of Dopes, I thought.
In a few minutes, though, Dr. SF came in. I was holding an open bottle of water and a lot of papers in my left hand and when I stood up to shake his hand, I inadvertently turned my wrist over and dumped half the bottle on the floor. We laughed about it and spent the first two minutes mopping things up.
We had a long conversation with Dr. SF. He works very closely with Dr. SH, and SH would be the one that would do my induction therapy and I'd go to CoH for the transplant with SF. I liked SF from the start. He seemed very smart, had a realistic but positive outlook. He concurred with SH about the diagnosis, although even though I'm stage 1 he thought that my back pain might be an indicator that we might want to start treatment sooner rather than later.
As for treatment, he is basically a single autologous transplant guy. He believed, in contrast to SH, that Revlimid WAS a better agent than Thalidomide, and he suggested using Velcade as well. I told him we'd need to come to a consensus. One of my concerns was whether Velcade should be reserved for a relapse (same deal with Revlimid, versus Thalidomide).
I asked about mini-allogeneic transplants, and Dr. SF said there was a role for those and we can discuss them at the appropriate time. I asked about the risk of allogeneic transplants and whether they were getting better at managing them over time, and he said that was definitely the case. He said that they were also looking at using total marrow irradiation as another type of treatment and that this could also have a role.
I asked him about Dr. BB's protocol of tandem transplants, and he told me that he had done them, and that Dr. BB had some impressive data. He offered to read up on the protocol and discuss it at our next meeting. There was a lot more that we discussed, and I will eventually post the audio from that conversation in the event others want to hear it. We were interrupted a couple of times, it is worth noting, when he pager went off. Sometimes he was able to ignore the message, but one time he had to take it.
Jill and I both felt very good about Dr. SF. In fact it completely turned around our initially negative opinion of CoH. We agreed that we would come back in a month or so, because there was a big hematological conference coming up where a lot of information would be shared and Dr. SF would have the latest and greatest information. He would also discuss my case amongst his peers at CoH to see if there was a consensus on what to do. We made an appointment for December 30th to review all of this.
Dr. SF advised against seeking too many opinions -- and yet I knew already that I would be discussing it with several others. He told me that doctors simply don't spend as much time reviewing something if they know they are the 11th or 12th doctor. I decided I would be selective in telling doctors how many other doctors I have seen. I'll talk a bit about "doctor proliferation" in the next post.
Lastly, I asked Dr. SF if he's heard of PinnacleCare. He almost winced. :) He said that they were most useful for people that didn't have the depth of knowledge or interest in research as I did, but that he would work with them if asked. Since I view their role in part as staying on top of doctors to ensure that I would get the best care, and since the one page that he HAD to interrupt our meeting for was from PinnacleCare, of all people, I decided I was going to hire them!
Jill and I drove out there, which took forever so we had no lunch. When we arrived, we valet parked and checked in. My office had already worked with Dr. SH's office to ensure my records had been sent over to City of Hope, and to fill out registration information. Of course the latter hadn't arrived when I checked in, so that was a little bit of a snafu but not the end of the world.
We were assigned a lady to shuttle us through our appointments, which included a new patient orientation, more bloodwork (I picked the wrong disease, for someone who dreads needles), a meeting with a social worker (will she, I wonder, hand out a pamphlet entitled "So, you've decided to get incurable cancer...") and the good doctor himself.
I was brought to new patient orientation where a lovely young lady of dutch descent missed the fact that my name was misspelled. Jill pointed out that I was in their system incorrectly, with an extra "h" in my first name and an "e" at the end of my last name. Not unusual for this to happen, so the woman began fixing it so she could print out the proper name tag and charts.
It was at this point that I realized I didn't have my iPhone. The iPhone, for those who don't know, is a really nifty mobile phone made by Apple that has a lot of interesting applications. One such application, which I figured would come in handy, is the ability to record a conversation. I taped the diagnosis with Dr. Hamburg with this device, and wanted to do the same for my conversation with Dr. Forman. But I realized I'd left it in the car. Jill went off to retrieve that while I waited for my paperwork to be fixed.
City of Hope is filled with very caring people and generally speaking everybody is very warm. But it's a frightening place. It really brought home that I am going to be very sick soon. Even in going to Dr. SH's office, I saw a lot of people getting a lot of tests done for blood ailments but it wasn't the same as being in a room full of people being treated with chemo, missing all their hair, undergoing these frightening treatments in the hopes of staying alive...and now it was all around me.
It was taking a while to finish my paperwork, but Jill still wasn't back from getting the cell phone. Just then, my work cell phone (not the iPhone but a Blackberry that I carry with me) rang. It was Jill and she was beside herself. The valets couldn't find the car, then couldn't figure out how to open it, then left her unattended for 10 minutes, then finally found her and had to take her in a shuttle to a remote lot. She was getting very frustrated. Meanwhile, my little old lady guide was starting to get cranky. I had to hurry up to have bloodwork done so I could make the appointment with the social worker. I asked her to please be patient, but we had a schedule to keep. I was concerned because this place is huge and Jill knew where I'd been brought but didn't know where the lab was. But I had no choice, so I called Jill and told her I would meet her in the lab.
The lab was out through the lobby so I could see the valet stand. I asked the little old lady to please wait and I went outside to check on Jill, but she was nowhere to be found. I went back in, and was brought to the lab. I sat down, and rolled up my sleeve as another volunteer came in with the 8 or 9 test tubes that they had to fill (they have to take a lot of blood...again not my favorite thing to do in the world).
The volunteer checked my bracelet, which had my name and ID on it, and we both noticed that the name on my charts and on the bloodwork was misspelled (Nicholas Vandyke). I told her that they had changed it, and she told me there was no way their system would accommodate a space in my last name. Around this time, Jill showed up, hungry for bear but finally with the cell phone. She and I both tried to explain to the volunteer that they had to have the space in there, or at least be consistent, or my records couldn't be kept proper track of.
After a little arguing, and a vigorous jab with the needle, and about five minute of bleeding into tubes, we left. Then we were told that the social worker -- the whole reason we were being rushed through this process -- had gone for the day. By this point, I was pretty damn angry. I wasn't exactly happy to be there in the first place, and then the administrative screwups were starting to get to me. We were brought to a waiting room where we were told it would be about an hour before we could see the doctor (since they'd planned on me being with a social worker for 45 minutes).
Soon enough, a nurse brought me into the doctor's office and they did more tests, including blood pressure. I am mildly hypertensive...around 135 or 140 over around 85 or so. Dr. PZ, the non-alarmist who has been my physician for 20 years, has asked me to monitor it and I have, but he doesn't believe it's high enough to need medication. At any rate, in my frame of mind I knew it would be high. I told the woman, whose English wasn't very good, that I was about to break her machine. Sure enough, it registered 189 over 99. She asked "are you on medication for high blood pressure" and I said "no, it's just the administrative screwups have agitated me." She didn't seem to grasp this. She tested my other arm, and it was the same. She asked, AGAIN, if I was on medication for high blood pressure. At this point, I was going to need it!! I told her again the situation, and we were brought back out to wait some more.
In a few minutes, we were brought back in to see the doctor by a different nurse. She put us in one of the exam rooms. Sure enough, she asked if I was on meds for high blood pressure. I almost lost it. At this point, I was not feeling very good about the City of Hope. More like City of Dopes, I thought.
In a few minutes, though, Dr. SF came in. I was holding an open bottle of water and a lot of papers in my left hand and when I stood up to shake his hand, I inadvertently turned my wrist over and dumped half the bottle on the floor. We laughed about it and spent the first two minutes mopping things up.
We had a long conversation with Dr. SF. He works very closely with Dr. SH, and SH would be the one that would do my induction therapy and I'd go to CoH for the transplant with SF. I liked SF from the start. He seemed very smart, had a realistic but positive outlook. He concurred with SH about the diagnosis, although even though I'm stage 1 he thought that my back pain might be an indicator that we might want to start treatment sooner rather than later.
As for treatment, he is basically a single autologous transplant guy. He believed, in contrast to SH, that Revlimid WAS a better agent than Thalidomide, and he suggested using Velcade as well. I told him we'd need to come to a consensus. One of my concerns was whether Velcade should be reserved for a relapse (same deal with Revlimid, versus Thalidomide).
I asked about mini-allogeneic transplants, and Dr. SF said there was a role for those and we can discuss them at the appropriate time. I asked about the risk of allogeneic transplants and whether they were getting better at managing them over time, and he said that was definitely the case. He said that they were also looking at using total marrow irradiation as another type of treatment and that this could also have a role.
I asked him about Dr. BB's protocol of tandem transplants, and he told me that he had done them, and that Dr. BB had some impressive data. He offered to read up on the protocol and discuss it at our next meeting. There was a lot more that we discussed, and I will eventually post the audio from that conversation in the event others want to hear it. We were interrupted a couple of times, it is worth noting, when he pager went off. Sometimes he was able to ignore the message, but one time he had to take it.
Jill and I both felt very good about Dr. SF. In fact it completely turned around our initially negative opinion of CoH. We agreed that we would come back in a month or so, because there was a big hematological conference coming up where a lot of information would be shared and Dr. SF would have the latest and greatest information. He would also discuss my case amongst his peers at CoH to see if there was a consensus on what to do. We made an appointment for December 30th to review all of this.
Dr. SF advised against seeking too many opinions -- and yet I knew already that I would be discussing it with several others. He told me that doctors simply don't spend as much time reviewing something if they know they are the 11th or 12th doctor. I decided I would be selective in telling doctors how many other doctors I have seen. I'll talk a bit about "doctor proliferation" in the next post.
Lastly, I asked Dr. SF if he's heard of PinnacleCare. He almost winced. :) He said that they were most useful for people that didn't have the depth of knowledge or interest in research as I did, but that he would work with them if asked. Since I view their role in part as staying on top of doctors to ensure that I would get the best care, and since the one page that he HAD to interrupt our meeting for was from PinnacleCare, of all people, I decided I was going to hire them!
Thursday, December 18, 2008
More research before the second opinion
Dr. SH advised me to keep off the Internet...it's a very depressing place for this, filled with old research, backward-looking forecasts for life expectancies, etc. He recommended only www.cancer.org, so I started there.
But soon, I couldn't help myself because this website just didn't have enough answers. By both nature and professional training, I am used to diagramming options and bottoming out all possible solutions, pros and cons. So I had to learn more.
I also spoke with a few friends. One of them, RH, mentioned that his father, DH, had received an allogeneic transplant about six years ago and that it was not that big a deal and DH was now cured. This was obviously a very tantalizing concept, so I explored it further.
These transplants began back in the 1980s. The first test group experienced a 47% (FORTY SEVEN!!!!) one-year treatment-related mortality rate. That means basically half the people in the study (and there were a few hundred over a ten year period) died from the treatment. In the 1990s, this number improved to about 33%. Still pretty high. Now, the number might be lower and some centers such as Stanford claim to have managed it down further. I wanted to explore just a little bit more.
Another interesting thing I learned is that the reason Dr. BB is in Arkansas is that Sam Walton (billionare founder of WalMart) died from Multiple Myeloma and he donated a lot of money to the University of Arkansas to build a Myeloma center. They hired Dr. BB away from MD Anderson in Houston, which is one of the leading cancer centers in the country, to head it up.
Another friend told me about an organization called Pinnacle Care. Pinnacle Care is a high-end medical concierge and they do everything from scheduling doctor appointments, ensuring records are being sent from point A to point B, doing research on clinical trials and any questions I might have (they have a staff of 12 properly credentialed researchers), accompanying me on doctor's visits to take notes, pre-registering me for appointments and using their network of doctors to get into see physicians that are very, very difficult to schedule. I scheduled a meeting with one of their representatives and discussed hiring them with Jill. They have several levels of membership, ranging from a few thousand a year to get a super-duper physical and a bunch of advice on how to live more healthily to intensive levels of service for someone in my condition. Such levels of service are extremely expensive, so it wasn't an easy choice...but I didn't want to be on my deathbad wondering if I'd done all I could so I mulled it over.
At this stage, there seemed to be a number of schools of thought:
No transplant -- Dr. JB
One autologous transplant -- Dr. SH (and per him, Mayo and City of Hope)
Multiple autologous transplants -- Dr. BB
Allogeneic transplants -- my friend's dad's doctor (Dr. RC) and possibly Stanford
Lots more to research, and lots of decisions to be made.
Jill and I met with EF, a delightful woman from Pinnacle Care who would be my case manager there. I felt very good about the meeting -- she's a very caring person and an RN, which would come in handy. Still, I wasn't certain yet about Pinnacle Care because of the expense, and the fact that the plan I needed was for a six month installment. I felt that I would need some up-front work to determine what treatment was needed, and then nothing more until such time as treatment was to begin. So I decided to wait and see until after I met with Dr. SF at City of Hope.
But soon, I couldn't help myself because this website just didn't have enough answers. By both nature and professional training, I am used to diagramming options and bottoming out all possible solutions, pros and cons. So I had to learn more.
I also spoke with a few friends. One of them, RH, mentioned that his father, DH, had received an allogeneic transplant about six years ago and that it was not that big a deal and DH was now cured. This was obviously a very tantalizing concept, so I explored it further.
These transplants began back in the 1980s. The first test group experienced a 47% (FORTY SEVEN!!!!) one-year treatment-related mortality rate. That means basically half the people in the study (and there were a few hundred over a ten year period) died from the treatment. In the 1990s, this number improved to about 33%. Still pretty high. Now, the number might be lower and some centers such as Stanford claim to have managed it down further. I wanted to explore just a little bit more.
Another interesting thing I learned is that the reason Dr. BB is in Arkansas is that Sam Walton (billionare founder of WalMart) died from Multiple Myeloma and he donated a lot of money to the University of Arkansas to build a Myeloma center. They hired Dr. BB away from MD Anderson in Houston, which is one of the leading cancer centers in the country, to head it up.
Another friend told me about an organization called Pinnacle Care. Pinnacle Care is a high-end medical concierge and they do everything from scheduling doctor appointments, ensuring records are being sent from point A to point B, doing research on clinical trials and any questions I might have (they have a staff of 12 properly credentialed researchers), accompanying me on doctor's visits to take notes, pre-registering me for appointments and using their network of doctors to get into see physicians that are very, very difficult to schedule. I scheduled a meeting with one of their representatives and discussed hiring them with Jill. They have several levels of membership, ranging from a few thousand a year to get a super-duper physical and a bunch of advice on how to live more healthily to intensive levels of service for someone in my condition. Such levels of service are extremely expensive, so it wasn't an easy choice...but I didn't want to be on my deathbad wondering if I'd done all I could so I mulled it over.
At this stage, there seemed to be a number of schools of thought:
No transplant -- Dr. JB
One autologous transplant -- Dr. SH (and per him, Mayo and City of Hope)
Multiple autologous transplants -- Dr. BB
Allogeneic transplants -- my friend's dad's doctor (Dr. RC) and possibly Stanford
Lots more to research, and lots of decisions to be made.
Jill and I met with EF, a delightful woman from Pinnacle Care who would be my case manager there. I felt very good about the meeting -- she's a very caring person and an RN, which would come in handy. Still, I wasn't certain yet about Pinnacle Care because of the expense, and the fact that the plan I needed was for a six month installment. I felt that I would need some up-front work to determine what treatment was needed, and then nothing more until such time as treatment was to begin. So I decided to wait and see until after I met with Dr. SF at City of Hope.
Dr. SH Explains My Diagnosis and Treatment Options
On Friday, November 14th I went with Jill to Dr. SH's office. We sat down and Dr. SH gave us a very thorough briefing on the disease, and on the courses of treatment. [I will be embedding the audio here for those that are interested in listening to the conversation...it's lengthy]
As this disease has no cure, there is no consensus on precisely what kind of treatment to give. The overview I provide below comes primarily from Dr. SH and also from some additional research I did. I'm trying to reveal, again, only what I learned at the time.
First, let's talk about staging. There are two systems of staging. One is called the Durie-Salmon system and this has been around for thirty years or so. Interestingly, Brian Durie is one of the doctors I will be speaking with at some point along the line. At any rate, the other system is (I believe) the International Staging System. Both systems have three stages. As I mentioned in a previous post, there is also a "stage 0" of sorts called indolent or smoldering myeloma. This is a low-risk state where people can remain for years (10 years is not unheard of) before progressing to stage 1.
In Stage 1, there is typically no breakdown of bones (no lesions can be seen on the X-ray), no anemia, moderate levels of elevated protein, and low levels of Beta 2 Microglobulin). Almost all doctors agree that stage 1 patients are not treated.
In Stage 3, lesions are observed on the bones, some patients may be anemic, there is calcium in the urine from the bone breakdown and renal function may be impaired, etc. Nasty stuff. All doctors agree that stage 3 patients need treatment immediately.
In between is Stage 2, which is marked very simply by being neither Stage 1 nor Stage 3. Dr. SH told me I was Stage 1. The only symptoms I exhibit are the protein spike (4g/DL) and the bone marrow involvement.
Dr. SH had sent my marrow for extensive chromosome analysis, which can help determine how aggressive the cancer is -- how fast it is moving from stage to stage. If it's fast moving and aggressive, he might recommend treatment immediately even though I am stage 1.
The goal of Myeloma treatment, since it is not presently considered curable, is to achieve remission and keep someone in remission for as long as possible. Generally speaking, the cancer will always return since medicine does not provide the means, currently, to terminate the root cause (the cancer "stem cell" that started the whole thing). There are a number of drugs that are used to bring the cancer into remission, and they have been growing in number and in the proliferation of combinations.
Myeloma used to be treated with chemotherapy alone (Melphalan is a particular type of chemotherapy). These agents weren't very effective at getting the cancer into remission, but they were all we had. During this period, the life expectancy of Myeloma patients was around seven months from diasgnosis. Yippee.
At some point, a class of steroids (not the kinds that build muscle, unfortunately) began to be used. Among these are prednisone and dexamethasone (the latter being about 4-5X the potency of the first). These suppress the immune system and reduce production of the bad plasma cells. It also weakens them somewhat, allowing the chemo to kill more of them.
In the early 1980s, stem cell transplants began to be used, and that extended life expectancies to about 3 to 5 years. Not great, but better than seven months. But I'll get into transplants more in a little bit.
In 2003 or thereabouts, the FDA approved Thalidomide, of all things, for Myeloma treatment. It is believed that Thalidomine works by restricting the growth of blood vessels that are conduits for Myeloma activity. The combination of Thalidomine and a steroid helped to increase life expectancy by another half-year. Baby steps, I suppose.
Around 2005, a very exciting (for those of us with Myeloma, anyhow) new drug called bortezomib (better known by the name Velcade) was approved for use in Myeloma. Velcade is a type of drug known as a protease inhibitor. Essentially, all cells have a mechanism through which they know when it is time to die. This mechanism doesn't work in cancer cells -- they stay alive forever and form tumors. Velcade essentially works to screw up the mechanism that tells them to stay alive. It's been very effective in getting patients into either complete remission (more on this in a moment) or very good partial remission. And it's been even more effective when used in combination with Thalidomide and/or a steroid.
Lastly, a cousin drug of Thalidomide, called Lenalidomid or known by its marketed name Revlimid, has been used.
Different doctors believe in using different combinations of these drugs. Dr. SH suggested he would start me, once treatment became necessary, on Velcade, Thalidomide and Dexamethasone. The latter two are taken orally on a daily basis, and the Velcade is administered in the Doctor's office through injection once a week. Dr. SH noted that his preference would be Thalidomide since Revlimid had not been demonstrated to be superior, and he noted that the MAYO Clinic uses this same protocol, as does City of Hope, which is a prestigious cancer center east of Los Angeles.
Drug resistance is also an issue. If these drugs are used to get the cancer into remission, when the cancer comes back, it may be resistant to some or all of the drugs, depending on how long it takes the cancer to return. If the cancer comes back in six months, it could be a very resistant strain. So we need to balance the need to be effective with the fact that we have only so many drugs in the arsenal, and want to make sure that we have big guns to throw at this thing later on.
These combinations have between 70%-90% effectiveness at getting very good response, or complete remission. Remission, definitionally, is the inability of the doctor to find any disease. Gone from the blood, bone marrow, the whole shebang. Very good partial remission or very good response are terms which refer to what you might guess: a state not which doesn't have complete remission but in which the disease is minimized.
Once I have responded to the treatment, and in the words of Dr. SH at the time "there is no reason to believe you won't" (note: this has subsequently been more or less borne in out some chromosomal analysis, which I'll get into later) the next step in Dr. SH's recommended treatment plan is a stem cell transplant.
Blood stem cells normally reside in the bone marrow and they instruct the marrow to product white blood cells, red blood cells and plasma cells (in normal amounts). The cancerous plasma cells in my marrow now are screwing this up. The disease will get rid of most of them, but some will not be effected by treatment and were I to go off the medicines, the cancer would almost certainly return and would probably do so quickly. Some doctors advocate staying on the drugs only. But most doctors advocate stem cell transplantation as a means of prolonging remission, or at least getting off the drugs (which have some bad side effects, particularly dexamethasone, which at this point Dr. SH downplayed but which I've subsequently learned is a nasty drug).
So...stem cell transplants. There are two kinds: autologous, which uses my own stem cells, and allogeneic (allo-gen-AY-ic), which uses stem cells from a donor. We'll talk about autologous first.
In an autologous transplant, I'll take the drugs mentioned above to bring my cancer into remission or get as close to it as possible. This process will take 4-6 months (several "cycles" of treatment that are essentially three weeks on and one week off to give my body a break from the dexamethasone). Once I have achieved the best response I can (hopefully complete remission), I will then be given a series of injections to "mobilize" the stem cells. That means moving them out of the bone marrow and into the bloodstream. These injections, I have subsequently learned, have flu-like aftereffects but nothing too serious.
Then, for somewhere between one and four days, I'll sit in a chair with a needle in each arm while blood is drawn from one side, circulated through a machine that separates the stem cells from the rest of the blood, and put back into the other arm. Much like a dialysis process. It's not supposed to be painful, although it is supposed to be rather dull since it takes four hours and one can't do much except sit there. I'll have to pick out some good movies to watch.
After they've harvested stem cells, I'll be given a few days to rest up from this procedure. Then the fun begins.
I'll go into the hospital, and will have a central IV line surgically placed near my major arteries and secured beneath my collar bone. This will serve for all blood tests and infusions going forward. Then, for two days, I'll be given what is called a "megadose" of chemotherapy. It will be Melphalan, the same chemo drug that they used to use way back when before all the other novel therapies came out, but the dosage will literally be 100 times what they would normally prescribe. This will be the first part of treatment that will have the traditional chemo side-effects, although they are evidently able to control the nausea now. But I will have mucositis (mouth sores and sore throat are the biggest side effects) and diarrhea and while they can do something to help control these, they are pretty much unavoidable. This is also when I will lose all my head, body and facial hair.
The chemo will kill 99.999% of the remaining Myeloma cells (remember, they can't get all of them, which is why this isn't curable yet). But the chemo will also kill my bone marrow and destroy all my white blood cells, red blood cells, and plasma cells. I will have no immune system, which means I'll get fevers and infections and I will have to have a lot of antibiotics being pumped in through the central line. I will have no red blood cells so I will be anemic and will need blood transfusions. This is why the transplant is necessary.
After the two days of chemo, they will give me a day of rest, and then on day four, they will take the stem cells they harvested, and put them back into me through the central IV line. These stem cells will settle in my bone marrow (this process is called engraftment) and after they've settled, my bone marrow will begin to produce the blood cells again. This takes about 2-3 weeks, after which I'll be discharged, assuming there are no complications.
Sounds fun, doesn't it?
The best part is this doesn't cure the cancer. But it will keep it away. Some people, and we'll get into a few of their stories, keep it away 10 years or even longer. Other people have it return in six months. The median is again about 3-4 years. We'll have to see.
The other type of transplant is an allogeneic transplant. This is similar, except that the blood stem cells are harvested from a matching donor. I'll get into how they determine a match in a future post (remember, I'm sticking to the order in which I learned all this). The advantage to an allogeneic transplant is that I would have an entirely new immune system, which would recognize the cancer as something that should be killed off (something which my own deficient immune system doesn't do well) and it would then be killed off. This is called Graft Versus Host Effect, or Graft Versus Host Disease. The Graft (the new stem cells and the bone marrow they engraft to) attacks the Host (the cancer in my bloodstream). This means that it is potentially curative. However, GVHD can cause major problems. It might reject the rest of my body and try to destroy my organs, etc. For this reason, there have been historically very high mortality rates associated with allogeneic transplants. We'll get into that, too, in a future post. But suffice to say, the mortality rates are still high enough where Dr. SH advises against them at this point.
Now, Dr. SH advised that there were many viewpoints on treatment, and biases throughout the country. Dr. JB, a prominent guy in Los Angeles, advises against any stem cell transplants (we'll call these SCTs in the future to save me time typing) because he doesn't believe they extend life, and Dr. SH agrees, but he believes there is value in being off drugs in-between transplants.
On the other end of the spectrum is Dr. BB, a very prominent guy in Arkansas and something of an iconoclast in the field. He believes in two or sometimes even three transplants in a row, followed by very aggressive post-transplant therapy (which I didn't realize at the time but which involves remaining on Velcade and RevDex for a year or more!!).
This of course prompted me to ask: if Dr. JB says transplants don't extend life, and if Dr. SH agrees, why on earth would Dr. BB suggest two or three? The answer: Dr. BB does believe they do...but nobody else can replicate his data, and there have been accusations of selection bias. There are boisterous arguments, as these things go, at hematological conferences, I am told.
Nonetheless, Dr. SH advised that I see Dr. BB, and someone at the Mayo Clinic, and indicated he would send me for a second opinion to Dr. SF at the City of Hope. I left overwhelmed, honestly, but I felt very good about Dr. SH.
As this disease has no cure, there is no consensus on precisely what kind of treatment to give. The overview I provide below comes primarily from Dr. SH and also from some additional research I did. I'm trying to reveal, again, only what I learned at the time.
First, let's talk about staging. There are two systems of staging. One is called the Durie-Salmon system and this has been around for thirty years or so. Interestingly, Brian Durie is one of the doctors I will be speaking with at some point along the line. At any rate, the other system is (I believe) the International Staging System. Both systems have three stages. As I mentioned in a previous post, there is also a "stage 0" of sorts called indolent or smoldering myeloma. This is a low-risk state where people can remain for years (10 years is not unheard of) before progressing to stage 1.
In Stage 1, there is typically no breakdown of bones (no lesions can be seen on the X-ray), no anemia, moderate levels of elevated protein, and low levels of Beta 2 Microglobulin). Almost all doctors agree that stage 1 patients are not treated.
In Stage 3, lesions are observed on the bones, some patients may be anemic, there is calcium in the urine from the bone breakdown and renal function may be impaired, etc. Nasty stuff. All doctors agree that stage 3 patients need treatment immediately.
In between is Stage 2, which is marked very simply by being neither Stage 1 nor Stage 3. Dr. SH told me I was Stage 1. The only symptoms I exhibit are the protein spike (4g/DL) and the bone marrow involvement.
Dr. SH had sent my marrow for extensive chromosome analysis, which can help determine how aggressive the cancer is -- how fast it is moving from stage to stage. If it's fast moving and aggressive, he might recommend treatment immediately even though I am stage 1.
The goal of Myeloma treatment, since it is not presently considered curable, is to achieve remission and keep someone in remission for as long as possible. Generally speaking, the cancer will always return since medicine does not provide the means, currently, to terminate the root cause (the cancer "stem cell" that started the whole thing). There are a number of drugs that are used to bring the cancer into remission, and they have been growing in number and in the proliferation of combinations.
Myeloma used to be treated with chemotherapy alone (Melphalan is a particular type of chemotherapy). These agents weren't very effective at getting the cancer into remission, but they were all we had. During this period, the life expectancy of Myeloma patients was around seven months from diasgnosis. Yippee.
At some point, a class of steroids (not the kinds that build muscle, unfortunately) began to be used. Among these are prednisone and dexamethasone (the latter being about 4-5X the potency of the first). These suppress the immune system and reduce production of the bad plasma cells. It also weakens them somewhat, allowing the chemo to kill more of them.
In the early 1980s, stem cell transplants began to be used, and that extended life expectancies to about 3 to 5 years. Not great, but better than seven months. But I'll get into transplants more in a little bit.
In 2003 or thereabouts, the FDA approved Thalidomide, of all things, for Myeloma treatment. It is believed that Thalidomine works by restricting the growth of blood vessels that are conduits for Myeloma activity. The combination of Thalidomine and a steroid helped to increase life expectancy by another half-year. Baby steps, I suppose.
Around 2005, a very exciting (for those of us with Myeloma, anyhow) new drug called bortezomib (better known by the name Velcade) was approved for use in Myeloma. Velcade is a type of drug known as a protease inhibitor. Essentially, all cells have a mechanism through which they know when it is time to die. This mechanism doesn't work in cancer cells -- they stay alive forever and form tumors. Velcade essentially works to screw up the mechanism that tells them to stay alive. It's been very effective in getting patients into either complete remission (more on this in a moment) or very good partial remission. And it's been even more effective when used in combination with Thalidomide and/or a steroid.
Lastly, a cousin drug of Thalidomide, called Lenalidomid or known by its marketed name Revlimid, has been used.
Different doctors believe in using different combinations of these drugs. Dr. SH suggested he would start me, once treatment became necessary, on Velcade, Thalidomide and Dexamethasone. The latter two are taken orally on a daily basis, and the Velcade is administered in the Doctor's office through injection once a week. Dr. SH noted that his preference would be Thalidomide since Revlimid had not been demonstrated to be superior, and he noted that the MAYO Clinic uses this same protocol, as does City of Hope, which is a prestigious cancer center east of Los Angeles.
Drug resistance is also an issue. If these drugs are used to get the cancer into remission, when the cancer comes back, it may be resistant to some or all of the drugs, depending on how long it takes the cancer to return. If the cancer comes back in six months, it could be a very resistant strain. So we need to balance the need to be effective with the fact that we have only so many drugs in the arsenal, and want to make sure that we have big guns to throw at this thing later on.
These combinations have between 70%-90% effectiveness at getting very good response, or complete remission. Remission, definitionally, is the inability of the doctor to find any disease. Gone from the blood, bone marrow, the whole shebang. Very good partial remission or very good response are terms which refer to what you might guess: a state not which doesn't have complete remission but in which the disease is minimized.
Once I have responded to the treatment, and in the words of Dr. SH at the time "there is no reason to believe you won't" (note: this has subsequently been more or less borne in out some chromosomal analysis, which I'll get into later) the next step in Dr. SH's recommended treatment plan is a stem cell transplant.
Blood stem cells normally reside in the bone marrow and they instruct the marrow to product white blood cells, red blood cells and plasma cells (in normal amounts). The cancerous plasma cells in my marrow now are screwing this up. The disease will get rid of most of them, but some will not be effected by treatment and were I to go off the medicines, the cancer would almost certainly return and would probably do so quickly. Some doctors advocate staying on the drugs only. But most doctors advocate stem cell transplantation as a means of prolonging remission, or at least getting off the drugs (which have some bad side effects, particularly dexamethasone, which at this point Dr. SH downplayed but which I've subsequently learned is a nasty drug).
So...stem cell transplants. There are two kinds: autologous, which uses my own stem cells, and allogeneic (allo-gen-AY-ic), which uses stem cells from a donor. We'll talk about autologous first.
In an autologous transplant, I'll take the drugs mentioned above to bring my cancer into remission or get as close to it as possible. This process will take 4-6 months (several "cycles" of treatment that are essentially three weeks on and one week off to give my body a break from the dexamethasone). Once I have achieved the best response I can (hopefully complete remission), I will then be given a series of injections to "mobilize" the stem cells. That means moving them out of the bone marrow and into the bloodstream. These injections, I have subsequently learned, have flu-like aftereffects but nothing too serious.
Then, for somewhere between one and four days, I'll sit in a chair with a needle in each arm while blood is drawn from one side, circulated through a machine that separates the stem cells from the rest of the blood, and put back into the other arm. Much like a dialysis process. It's not supposed to be painful, although it is supposed to be rather dull since it takes four hours and one can't do much except sit there. I'll have to pick out some good movies to watch.
After they've harvested stem cells, I'll be given a few days to rest up from this procedure. Then the fun begins.
I'll go into the hospital, and will have a central IV line surgically placed near my major arteries and secured beneath my collar bone. This will serve for all blood tests and infusions going forward. Then, for two days, I'll be given what is called a "megadose" of chemotherapy. It will be Melphalan, the same chemo drug that they used to use way back when before all the other novel therapies came out, but the dosage will literally be 100 times what they would normally prescribe. This will be the first part of treatment that will have the traditional chemo side-effects, although they are evidently able to control the nausea now. But I will have mucositis (mouth sores and sore throat are the biggest side effects) and diarrhea and while they can do something to help control these, they are pretty much unavoidable. This is also when I will lose all my head, body and facial hair.
The chemo will kill 99.999% of the remaining Myeloma cells (remember, they can't get all of them, which is why this isn't curable yet). But the chemo will also kill my bone marrow and destroy all my white blood cells, red blood cells, and plasma cells. I will have no immune system, which means I'll get fevers and infections and I will have to have a lot of antibiotics being pumped in through the central line. I will have no red blood cells so I will be anemic and will need blood transfusions. This is why the transplant is necessary.
After the two days of chemo, they will give me a day of rest, and then on day four, they will take the stem cells they harvested, and put them back into me through the central IV line. These stem cells will settle in my bone marrow (this process is called engraftment) and after they've settled, my bone marrow will begin to produce the blood cells again. This takes about 2-3 weeks, after which I'll be discharged, assuming there are no complications.
Sounds fun, doesn't it?
The best part is this doesn't cure the cancer. But it will keep it away. Some people, and we'll get into a few of their stories, keep it away 10 years or even longer. Other people have it return in six months. The median is again about 3-4 years. We'll have to see.
The other type of transplant is an allogeneic transplant. This is similar, except that the blood stem cells are harvested from a matching donor. I'll get into how they determine a match in a future post (remember, I'm sticking to the order in which I learned all this). The advantage to an allogeneic transplant is that I would have an entirely new immune system, which would recognize the cancer as something that should be killed off (something which my own deficient immune system doesn't do well) and it would then be killed off. This is called Graft Versus Host Effect, or Graft Versus Host Disease. The Graft (the new stem cells and the bone marrow they engraft to) attacks the Host (the cancer in my bloodstream). This means that it is potentially curative. However, GVHD can cause major problems. It might reject the rest of my body and try to destroy my organs, etc. For this reason, there have been historically very high mortality rates associated with allogeneic transplants. We'll get into that, too, in a future post. But suffice to say, the mortality rates are still high enough where Dr. SH advises against them at this point.
Now, Dr. SH advised that there were many viewpoints on treatment, and biases throughout the country. Dr. JB, a prominent guy in Los Angeles, advises against any stem cell transplants (we'll call these SCTs in the future to save me time typing) because he doesn't believe they extend life, and Dr. SH agrees, but he believes there is value in being off drugs in-between transplants.
On the other end of the spectrum is Dr. BB, a very prominent guy in Arkansas and something of an iconoclast in the field. He believes in two or sometimes even three transplants in a row, followed by very aggressive post-transplant therapy (which I didn't realize at the time but which involves remaining on Velcade and RevDex for a year or more!!).
This of course prompted me to ask: if Dr. JB says transplants don't extend life, and if Dr. SH agrees, why on earth would Dr. BB suggest two or three? The answer: Dr. BB does believe they do...but nobody else can replicate his data, and there have been accusations of selection bias. There are boisterous arguments, as these things go, at hematological conferences, I am told.
Nonetheless, Dr. SH advised that I see Dr. BB, and someone at the Mayo Clinic, and indicated he would send me for a second opinion to Dr. SF at the City of Hope. I left overwhelmed, honestly, but I felt very good about Dr. SH.
Wednesday, December 17, 2008
The Life-Changing Phone Call
...or so I thought.
Two days later, on November 13th, I got a call around 2:30PM from Dr. SH. He told me that he had looked at my bone marrow, and that it "looks like you have Myeloma." I stopped my car. My heart was pounding, but I tried to be calm. "What does this mean, then?"
SH: "It's a serious problem for someone at your age, and you need to come in and we can discuss your options."
This was a decidedly different tone from the person who the week before had laughed when I told him my doctor friend said I had less than five years to live. I asked him "so what is the five year prognosis? Am I going to die?"
SH: "That's not an easy question to answer. It's a long conversation. I'd like you to come in tomorrow afternoon, you will be my only patient and we can review all the options thoroughly."
I spent the evening telling our closest friends, crying a lot, reviewing life insurance policies and trying to figure out how my family would fare financially without me, and reading about Myeloma on the Internet (which led to a lot more crying and financial calculations). Not much fun. Not much sleep. Not much else.
Two days later, on November 13th, I got a call around 2:30PM from Dr. SH. He told me that he had looked at my bone marrow, and that it "looks like you have Myeloma." I stopped my car. My heart was pounding, but I tried to be calm. "What does this mean, then?"
SH: "It's a serious problem for someone at your age, and you need to come in and we can discuss your options."
This was a decidedly different tone from the person who the week before had laughed when I told him my doctor friend said I had less than five years to live. I asked him "so what is the five year prognosis? Am I going to die?"
SH: "That's not an easy question to answer. It's a long conversation. I'd like you to come in tomorrow afternoon, you will be my only patient and we can review all the options thoroughly."
I spent the evening telling our closest friends, crying a lot, reviewing life insurance policies and trying to figure out how my family would fare financially without me, and reading about Myeloma on the Internet (which led to a lot more crying and financial calculations). Not much fun. Not much sleep. Not much else.
First visit to Dr. SH
I went to visit Dr. SH on Nov. 7, 2008 to do further diagnostics. I had so much blood drawn that I told the Doctor if I didn't have anemia when I came in, I certainly did now. He told me what I more or less had guessed from my research, which is that two other tests were needed: x-rays and a bone marrow biopsy. Readers of the previous blog entry will understand the diagnostic value of these tests.
I wasn't quite prepared psychologically (or pharmacalogically) for the bone marrow biopsy (also called an "aspiration", which is the nicest name I can think of for a needle the girth of a pencil to be punched through your hip bone), plus I had to get back to my office so I scheduled these for the following Monday. Meanwhile, Dr. SH told me a bit more about MGUS and Myeloma.
He again seemed to characterize MGUS as a slightly different condition, but I believe that it is a full precursor to Myeloma -- it's just that for most people it never develops. In any case, once Myeloma is there, there are four stages: (1) smoldering myeloma, which is very, very early stage and may take years or even decades to progress, (2) stage 1 myeloma, which isn't treated, (3) stage 2 myeloma, where there is debate on whether or not it is treated and how aggressively, and (4) stage 3 myeloma which everybody agrees should be treated.
I told SH that I wanted Versed, which is a "waking sleep" kind of medication, before the bone marrow aspiration and he said that was done commonly and that it would be no problem. Dr. PZ, who I've mentioned is not alarmist, said that marrow biopsies are "uncomfortable" but that he had seen a range of reactions, from little old ladies going through it and saying "oh, you're done already?" to healthy young men screaming loud enough to peel paint from the walls. Between this, my good friend Dr. BM's comments that it's painful, and comments from another Dr. friend that they are "extremely unpleasant", I was not going into this without some medication.
The following Monday, Nov. 10th, I got my X-rays, and bone marrow biopsy. As the aspiration site near the small of my back was being prepped for the bone marrow biopsy, Dr. SH told me that all the blood work was negative save for the monoclonal protein spike, and that the X-rays were all negative (no lesions were observed on the bones). Everything, he said, was pointing in the direction of MGUS. Terrific, I thought. And I left the office without any sense of dread.
I reported back to Dr. BM, my friend, who had expressed concern. When I told him it looked like MGUS, he was relieved. Myeloma was a very serious condition, he said, with average life expectancy from diagnosis of less than five years. That certainly sounded horrible...I was glad it looked like I didn't have it...
I wasn't quite prepared psychologically (or pharmacalogically) for the bone marrow biopsy (also called an "aspiration", which is the nicest name I can think of for a needle the girth of a pencil to be punched through your hip bone), plus I had to get back to my office so I scheduled these for the following Monday. Meanwhile, Dr. SH told me a bit more about MGUS and Myeloma.
He again seemed to characterize MGUS as a slightly different condition, but I believe that it is a full precursor to Myeloma -- it's just that for most people it never develops. In any case, once Myeloma is there, there are four stages: (1) smoldering myeloma, which is very, very early stage and may take years or even decades to progress, (2) stage 1 myeloma, which isn't treated, (3) stage 2 myeloma, where there is debate on whether or not it is treated and how aggressively, and (4) stage 3 myeloma which everybody agrees should be treated.
I told SH that I wanted Versed, which is a "waking sleep" kind of medication, before the bone marrow aspiration and he said that was done commonly and that it would be no problem. Dr. PZ, who I've mentioned is not alarmist, said that marrow biopsies are "uncomfortable" but that he had seen a range of reactions, from little old ladies going through it and saying "oh, you're done already?" to healthy young men screaming loud enough to peel paint from the walls. Between this, my good friend Dr. BM's comments that it's painful, and comments from another Dr. friend that they are "extremely unpleasant", I was not going into this without some medication.
The following Monday, Nov. 10th, I got my X-rays, and bone marrow biopsy. As the aspiration site near the small of my back was being prepped for the bone marrow biopsy, Dr. SH told me that all the blood work was negative save for the monoclonal protein spike, and that the X-rays were all negative (no lesions were observed on the bones). Everything, he said, was pointing in the direction of MGUS. Terrific, I thought. And I left the office without any sense of dread.
I reported back to Dr. BM, my friend, who had expressed concern. When I told him it looked like MGUS, he was relieved. Myeloma was a very serious condition, he said, with average life expectancy from diagnosis of less than five years. That certainly sounded horrible...I was glad it looked like I didn't have it...
What is Myeloma (Basic version)
So what exactly is this thing?
While Dr. PZ in his non-alarmist way referred to it obliquely as a "malignancy of the blood" it is, to use starker terminology, cancer of the blood plasma. I had asked Dr. PZ if it was as bad as Leukemia and he said it was not...but honestly I'm not so sure. I gather that it depends upon what kind of Leukemia one is talking about. Anyhow...
Plasma cells are cells in the blood that help the body produce antibodies in order to fight off illness. One's bone marrow instructs the body to manufacture these cells (as well as white and red blood cells). In a healthy person, about 4% of one's bone marrow is represented by plasma cells. In Myeloma, one plasma cell has a genetic abnormality and it (as is the case in all cancer) doesn't live the normal life of a cell, but refuses to die. It divides, as all cells do, but it makes clones of itself that also refuse to die. Over time, the plasma cells crowd out the other components of the bone marrow and a person is left with no white blood cells or healthy plasma cells to fight infection, and no red blood cells. Thus, anemia is a common sign of Myeloma.
Myeloma cells also send instructions for other types of cells to be created, and these cells attack and eat bone. Typically, bones all over the place are affected and multiple tumors show up, hence the name Multiple Myeloma. Over time, bones are eaten up and this puts calcium into the bloodstream, which if unchecked wreaks havoc on the kidneys. A person with Myeloma, therefore, ultimately succumbs to either an opportunistic infection which the body cannot fight off, or severe renal failure.
Lovely.
While Dr. PZ in his non-alarmist way referred to it obliquely as a "malignancy of the blood" it is, to use starker terminology, cancer of the blood plasma. I had asked Dr. PZ if it was as bad as Leukemia and he said it was not...but honestly I'm not so sure. I gather that it depends upon what kind of Leukemia one is talking about. Anyhow...
Plasma cells are cells in the blood that help the body produce antibodies in order to fight off illness. One's bone marrow instructs the body to manufacture these cells (as well as white and red blood cells). In a healthy person, about 4% of one's bone marrow is represented by plasma cells. In Myeloma, one plasma cell has a genetic abnormality and it (as is the case in all cancer) doesn't live the normal life of a cell, but refuses to die. It divides, as all cells do, but it makes clones of itself that also refuse to die. Over time, the plasma cells crowd out the other components of the bone marrow and a person is left with no white blood cells or healthy plasma cells to fight infection, and no red blood cells. Thus, anemia is a common sign of Myeloma.
Myeloma cells also send instructions for other types of cells to be created, and these cells attack and eat bone. Typically, bones all over the place are affected and multiple tumors show up, hence the name Multiple Myeloma. Over time, bones are eaten up and this puts calcium into the bloodstream, which if unchecked wreaks havoc on the kidneys. A person with Myeloma, therefore, ultimately succumbs to either an opportunistic infection which the body cannot fight off, or severe renal failure.
Lovely.
Diagnosis
Many of you know this already...but I've got some catching up to do for those who don't and if I'm going to do this blog thing right, I better start from the beginning.
One of the less valuable cards in the genetic hand I was dealt is high cholesterol. I'd battled this over time through exercise (long-since given up, sadly, mostly as a result of my work hours) and diet, but my primary physician Dr. PZ had advised that if I wasn't able to control the cholesterol through these measures, medication would be needed. I was able to bring up my HDL (the "good" cholesterol) through exercise and control my triglycerides through diet, but the LDL ("bad" cholesterol) kept increasing until it got out of hand. Around 2006 after my total cholesterol was close to breaking the 300 barrier, we decided it was high time to go on medication. My medication, Lipitor, did an excellent job of bringing my total cholesterol down to under 200 (it was 165 the last time I had it checked). All was well.
In addition to this suspect genealogical trait, I also inherited from my parents the fortunate geography of my birth, a city very close to California's wine country. Over time, with rising income and the influence of my wine-loving brothers (one of whom is an avid collector) I've become quite a wine aficionado myself, and at this time I've got a fairly formidable collection. I would never stoop to collecting for investment's sake...that is, I drink the stuff! Not to excess, but enough where, in combination with the Lipitor, it's prudent to check liver levels as Lipitor works by inhibiting some liver functions (the liver is what creates cholesterol in the bloodstream).
Dr. PZ ran an ordinary blood panel on my liver in October, 2008. And he noticed something odd: a spike in my protein levels. I went back to the office and ran another blood test to confirm it, and it was still there.
Dr. PZ advised me that I had what is called a "monocolonal spike" -- which is to say a particular protein was observed in an analysis of my blood and that protein didn't belong there. He told me of two potential conditions, which I initially believed were separate conditions but which I now believe to be related.
The first of these conditions is called MGUS ("em-gus"), which is short for "monoclonal gammopathy of undetermined significance." This means, essentially, that nobody knows why the protein is there, but it's not a big deal and just needs to be monitored. There is a 4-10% chance that, at some point in a person's life, MGUS would lead to the second condition, but most people live "for decades" without issues.
The second condition is Multiple Myeloma, which Dr. PZ described in non-fatalistic terms (he's a very non-alarmist guy) as a "malignancy of blood plasma cells." He didn't opine further, even when I told him that "anything that ends in 'oma' sounds really bad.
Both these conditions, I was told, are quite rare in someone of my age.
Dr. PZ referred me to a hematologist / oncologist, Dr. SH. PZ, who I trust completely, said there are other good ones, but SH is the best he knows. So a few days later, I went to see Dr. SH. But before that, I did a little research on what Multiple Myeloma (MM) is (this will be the next blog entry).
Oh...and for anyone concerned about red wine intake, it's been shown in some trials to be beneficial vis-a-vis myeloma.
One of the less valuable cards in the genetic hand I was dealt is high cholesterol. I'd battled this over time through exercise (long-since given up, sadly, mostly as a result of my work hours) and diet, but my primary physician Dr. PZ had advised that if I wasn't able to control the cholesterol through these measures, medication would be needed. I was able to bring up my HDL (the "good" cholesterol) through exercise and control my triglycerides through diet, but the LDL ("bad" cholesterol) kept increasing until it got out of hand. Around 2006 after my total cholesterol was close to breaking the 300 barrier, we decided it was high time to go on medication. My medication, Lipitor, did an excellent job of bringing my total cholesterol down to under 200 (it was 165 the last time I had it checked). All was well.
In addition to this suspect genealogical trait, I also inherited from my parents the fortunate geography of my birth, a city very close to California's wine country. Over time, with rising income and the influence of my wine-loving brothers (one of whom is an avid collector) I've become quite a wine aficionado myself, and at this time I've got a fairly formidable collection. I would never stoop to collecting for investment's sake...that is, I drink the stuff! Not to excess, but enough where, in combination with the Lipitor, it's prudent to check liver levels as Lipitor works by inhibiting some liver functions (the liver is what creates cholesterol in the bloodstream).
Dr. PZ ran an ordinary blood panel on my liver in October, 2008. And he noticed something odd: a spike in my protein levels. I went back to the office and ran another blood test to confirm it, and it was still there.
Dr. PZ advised me that I had what is called a "monocolonal spike" -- which is to say a particular protein was observed in an analysis of my blood and that protein didn't belong there. He told me of two potential conditions, which I initially believed were separate conditions but which I now believe to be related.
The first of these conditions is called MGUS ("em-gus"), which is short for "monoclonal gammopathy of undetermined significance." This means, essentially, that nobody knows why the protein is there, but it's not a big deal and just needs to be monitored. There is a 4-10% chance that, at some point in a person's life, MGUS would lead to the second condition, but most people live "for decades" without issues.
The second condition is Multiple Myeloma, which Dr. PZ described in non-fatalistic terms (he's a very non-alarmist guy) as a "malignancy of blood plasma cells." He didn't opine further, even when I told him that "anything that ends in 'oma' sounds really bad.
Both these conditions, I was told, are quite rare in someone of my age.
Dr. PZ referred me to a hematologist / oncologist, Dr. SH. PZ, who I trust completely, said there are other good ones, but SH is the best he knows. So a few days later, I went to see Dr. SH. But before that, I did a little research on what Multiple Myeloma (MM) is (this will be the next blog entry).
Oh...and for anyone concerned about red wine intake, it's been shown in some trials to be beneficial vis-a-vis myeloma.
Blog Basics
Just some basics up-front to help you make heads or tails of all this.
I'm going to publish more or less in the order that my own understanding has progressed, so we'll begin with my diagnosis rather than with an understanding of the disease.
I'm fortunate to live in Los Angeles, where there are a number of world-leading myeloma specialists. By both natural inclination and professional training, I am inclined to ask questions and bottom-out the research required to get the answer. Further, this is a complex disease and there is neither a cure nor a consensus on treatment protocol. This adds up to the fact that I'll be seeing a lot of doctors. Many of these doctors are of significant renown in the myeloma field and for that reason, I'll use initials out of respect for their privacy. There are so many doctors that I'll need to use first and last initials to keep them straight, so the privacy isn't exactly iron-clad, but it is what it is.
So with that...on to my diagnosis.
I'm going to publish more or less in the order that my own understanding has progressed, so we'll begin with my diagnosis rather than with an understanding of the disease.
I'm fortunate to live in Los Angeles, where there are a number of world-leading myeloma specialists. By both natural inclination and professional training, I am inclined to ask questions and bottom-out the research required to get the answer. Further, this is a complex disease and there is neither a cure nor a consensus on treatment protocol. This adds up to the fact that I'll be seeing a lot of doctors. Many of these doctors are of significant renown in the myeloma field and for that reason, I'll use initials out of respect for their privacy. There are so many doctors that I'll need to use first and last initials to keep them straight, so the privacy isn't exactly iron-clad, but it is what it is.
So with that...on to my diagnosis.
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