Okay, spoke with BB...

I like this guy -- he called me after his dinner ended at 11PM his time.  It seems his assistant / clinician MAY have overstated things.

My chromosome 1 abnormality is not a good sign.  But it's not definitive.  Their proprietary gene array analysis will need to be done to determine what is going on.

But he did say that he thought my regularly scheduled appointment on the 25th would be soon enough.  In other words, I have next week to spend with family and friends.

So I am back, albeit somewhat shaken by the process, to believing that I will be in the low-risk group.  I have too many otherwise positive markers.  So until they prove to me that my gene array analysis definitively puts me in the high risk category, I'll go on believing I am low risk.

If I *am* deemed high risk, and his protocol can't help me, then I will go with KA's suggested regimen (which is consistent with what City of Hope and Dr. SH would do) which would be Velcade, Revlimid and Dex during induction, followed by a single autologous transplant, followed by maintenance on Revlimid.  Followed by finger crossing to make sure more drugs come out.

What a day...ugh.

Now drinking:

Had a 2002 Quilceda Creek (100 points in Parker).  Delicious.  Moving on to a 2000 Chateau Pavie (100 points in Parker as well).  It's a two bottle evening.  The liver can wait!

The worst thing about this, by the way...

...is that now people need to scroll down to see that sweet photo of Jack Elam.  :)

Bad news...

Probably very bad news, actually.

I received word from BB's office that based on my chromosome 1 abnormality, which most people do not associate with high risk, that I *am* high risk.  They use a more robust analysis of genes and chromosomes than elsewhere.  The historical markers of risk -- chromosome 13 deletion and 4;14 translocation, neither of which I have -- haven't been used in more than 2 years in BB's offices because they were proved in multivariate analysis to not be useful factors.  In other words, because they have enough data at BB's shop (since he sees more people than anybody in the world) they can run more complicated statistical analyses of what types of this cancer are worse than others.

They believe I am high risk.

What does this mean?  Well, a couple of things.

1.  I will not benefit from their treatment.  In contrast to low-risk MM, where people who go through BB's protocol have a 50-60% chance of being cured and 85% are still alive 4 years after diagnosis, with HIGH-risk MM, only 25% are still alive after 4 years...and there is no "plateau" that suggests a cure.  So 25% are alive after 4 years, 20% after 5, etc. with nobody beating it.   In BB's own words in his presentation "The Myth of Incurability" (which evidently only applies to low-risk cases), he writes "The outcome is still dismal for high-risk MM."

2.  I can't even wait two weeks to be seen.  I think I will have to go next week.

The one thing I am wondering is all they are going off is my chromosome writeup from City of Hope, which noted that I have a chromosome 1 abnormality which is present in about 15% of people.  If that was the ONLY thing that separated low- from high-risk, then they wouldn't need to look at the rest of the genes.

I'm hoping that's the case.  But for the first time since my initial diagnosis, I'm scared to death.

BB's clinician is at dinner now but should be calling soon.  I may post another update tonight.

Today had been a good day -- I was upbeat, I was joking with my brothers this morning, and I received a very nice note from a person whose husband is battling a brain tumor, who said this blog was uplifting.  I'm glad it can be...I hope it remains that way consistently.

Right now, there are no guarantees.

Quick update on a few things...

Well, we got started on the will and trust for the kids today. Overdue, and not exactly uplifting, but I felt very responsible when we finished our meeting with the attorney. If only I'd gotten that damn long-term disability I'd feel like the most responsible guy in town.

I spoke with Dr. PZ, my primary physician who got this whole mess started when he was smart enough to chase down the meaning of that protein back in early November. He said that he had looked at protein levels in the past, and they had never been elevated. So there goes the theory that the MM raised my cholesterol. On the other hand, he was fully supportive of stopping Lipitor, so I'm now off that. He was also supportive of reducing alcohol consumption (very few doctors actually suggest you drink MORE...

...other than perhaps Jack Elam's character in Cannonball Run). Hopefully I won't meet anybody at BB's clinic that resembles him. I scoured the Internet for a bigger picture that showed off his stethoscope but couldn't find anything. You'll have to use your imagination but I assure you, he's wearing a medical coat.

Anyhow, so no Lipitor, reduced alcohol and I am considering taking milk thistle extract in order to help the liver get into tip-top shape before and during chemo. Even if I discontinue it during the chemo, I will probably use it for the next month or so to help the liver get strong. PinnacleCare is looking into the one clinical trial I found out (comparing two groups in treatment for leukemia to see which group -- the one on the extract or the one on a placebo -- better manages liver damage from the chemo).

I started telling folks at work today, and they were very supportive. I'm about to click "send" on a letter to the CEO. I'm working on a lot of projects and I'm gonna be out of commission for several months -- I don't want him to think I just vanished without a trace!

Consult with Dr. KA, and some pleasant surprises...

Well, not in that order, exactly.

Pleasant Surprise #1: I got my Vicodin prescription (750mg pills), but rather than take one of those, I took one 500mg pill that Jill had left over from her bout with Meningitis last summer (waste not want not when it comes to narcotics!). I work up the next morning, long after the Vicodin would have worn off, and my pain was remarkably better. I still felt it if I exerted myself, but I was able to manage without even any Advil, much less 750mg of Vicodin. Since last Thursday, I've felt a little pain in my back (though today it feels fine) and intermittent rib pain when I exert myself, but it's nowhere NEAR the degree of discomfort that I had last week. I'm doing my best not to lift anything (tough, as both the kids want me to play with them) and golf (even running) is out of the question, but otherwise I can get around more or less.

Since I was feeling better, I went to Las Vegas this last weekend for my annual trip with a bunch of former Disney executives. This was a calculated risk...my buddies and I have a saying: "go to Vegas healthy, come back sick...go to Vegas sick, come back dead." Obviously my immune system isn't firing on all cylinders, but I also took it a little easier than usual and I feel fine.

This is always a good time and this trip proved no different. On the long list of people that deserve Cancer more than me, let me add Jake Delhomme, the QB for the Tennessee Titans. That terrible performance cost me a couple of hundred bucks!!!! (please note: I would NEVER wish cancer on anybody -- even Jake -- so please understand I'm kidding...it's just that I haven't cracked a joke on this blog in quite some time).

Pleasant Surprise #2: I awoke this morning to an email from BK, a very prominent executive in the videogame business that I've known for some time and who earlier on called the director of the City of Hope, whom he knows well, on my behalf. BK has been fantastic and I owe him my thanks. His email this morning introduced me to a friend of his, CN, who he told me to call.

CN is an executive in Detroit (not car associated) whose wife, I learned, contracted MM 13 years ago. I spoke with him for about 40 minutes and he was immensely helpful. He approached the disease in the exact way I did. He researched everything he could, spoke with all the top doctors, joined the board of the IMF (the International Myeloma Foundation, which is the other group, along with Kathy Giusti's MMRF, that works to cure this disease), goes to hematology conferences, etc. When we were speaking, I anticipated what his comments and questions would be, and he anticipated mine -- it was two like minds talking about a problem they were both tackling and it helped a lot.

He knows every one of the top doctors and as he went through the list I was almost laughing because they are precisely the ones I have spoken with. He explained the biases / philosophies of each doctor and they are consistent with what I've observed. He told me he was surprised I was able to speak with KA at all, much less have KA take a deep interest in my case, which was great since I was to speak with KA shortly.

Perhaps most importantly, he told me his wife went through Total Therapy 1 with BB and has been in complete remission for eight years. He thinks BB is a very quirky guy (a 65 year old who rides a motorcycle to the office and does rounds in black leather pants), but an excellent doctor. I have no problem with quirky so long as I'm cured. He said that long-term leukemia isn't an issue with BB's agents because the real issue for leukemia is prolonged use of these chemicals. BB's protocol involves no more than 12 days of these drugs (and possibly as few as 4), as opposed to a regiment that could have them on them for weeks or even months. He mentioned BB has gotten very good at assessing which agents need to be used.

I then spoke with Dr. KA for about an hour. KA is a terrific doctor and was great to speak with. The highlights:

* He concurs with the diagnosis. He is heartened by the fact that my Beta 2 Microglobulin is not high, my C Reactive Protein is normal, there is no bone disease, there is no renal failure, etc. He said I have hyperdiploid myeloma which has a better outcome than most myeloma. The absence of negative chromosomal factors like Chromosome 13 deletion, 4;14 translocation, etc. are all positives as well. Nonetheless, I still have MM, and it is progressing rapidly enough where treatment needs to happen soon.

* The fact that I have a second unrelated clone (meaning two separate cells went haywire and started duplicating) is "not as uncommon as people think...it probably happens in 30 percent of cases."

* His recommended treatment is induction with novel agents (Velcade, Revlimid, Dex) followed by high dose melphalan and autologous transplant.

* He is in favor of maintenance therapy (specifically Revlimid)

* He thinks the VRD regimen is so effective that, when combined with my generally favorable prognostic factors, that "there is a 99% chance you will be in complete remission after induction therapy." I like those odds -- I'm 100% certain of that much myself, actually.

* He thinks the TT3 protocol that BB uses (and he has known BB for 30 years, and also SF for 30 years which is great) "would not be crazy to pursue" although it's not something that Dana Farber would "ever do." The reason being that the new drugs are so effective it might be possible to achieve the same results from less drugs, or from a single transplant rather than a double transplant. [Unfortunately, in my opinion, the same logic that says "you're in remission after one transplant, you don't need another" would also say "you're in remission after induction, you don't need a transplant." BB's protocol really is everything and the kitchen sink. The issue seems to be that one might be able to be cured just by using the faucets without whacking you over the head with a large enamel basin]

* On the topic of kitchen sink, I asked about the chance for long-term leukemia in BB's protocol. He had heard of it but thought the odds were low (I failed to ask how low), but he seemed to think that there could be secondary marrow problems that might result in low blood counts that might make it difficult for me to be put into trials for new drugs that are coming out.

* New drugs coming out include something called heat shock proteins (harvested from sea creatures at the ocean floor, evidently) and HDAC inhibitors. He thought a combination of HDAC inhibitors and heat shock proteins with VRD might very well be a cocktail that could achieve remission for a "very, very long time." He noted that the quoted median survival of 3-4 years which has recently increased to 7-8 years does NOT include the benefit of Relvlimid or Velcade, so I could be looking already at 10+ years of median survival without even getting the transplant. Take THAT, Dr. ML!!!! (he was the "don't plan on living to Parker's wedding" guy).

* The same French doctors that did a study proving that early transplant after induction is better than late transplant are now repeating that trial with VRD. Two arms of the study will go on VRD and have their stem cells harvested, one group will get the transplant immediately, and one will wait until recurrence. They can then see if early transplant still makes a difference. It would be very interesting to see the results of this -- but they won't be useful for another 8 years or so.

* He thinks that Lipitor did not cause the cancer, but he does note that Myeloma can confuse cholesterol readings. It may be possible that when my cholesterol went from its fairly predictable 220-230 about three years ago up to almost 300, this was the MM starting up. I'm going to check with PZ to see what, if anything, the protein levels were back then. He had mentioned that there hadn't been high protein in my bloodwork before but it's possible he didn't run all the same labs. In any case, when I go in for high-dose chemo, I will have to be off all meds including Lipitor (which irritates the liver). And no wine. I want my liver as strong as possible to deal with the high-dose chemo. So once I start treatment, two glasses a week is it for me. : (

* He thinks there should NOT being any long-term peripheral neuropathy as long as I am not on Thalidomide. So one big question for BB is why use Thalidomide if Revlimid is more efficacious and not likely to cause neuropathy? Velcade still will, but it is dose and schedule dependent and there are things that can be done to modulate those. "We've gotten very good at that," he says. The other big question for BB is the likelihood of leukemia and secondary marrow problems. KA says BB will tell me it's not a problem at all, "but I am whispering that it might be." I wish there was less uncertainty about these things! The last thing I want to do is get into remission for 7 years with BB, have it recur, and then have mangled my marrow such that I can't tolerate or benefit from HDAC inhibitors, Carfilzomib (next-gen Velcade), etc.

* He said there was no real difference between in-patient vs. out-patient. He said that "old timers" like him and Dana Farber would be inclined for in-patient. I think more and more that this depends on the quality of the hospital -- I want to make sure it's new, and clean, and has a good means of confining germs. And that the rooms aren't someplace that I'll be miserable while I'm there, of course (beyond the inevitable misery of the disease and treatment itself).

* He thought I shouldn't wait very long for treatment, so I'm reluctantly moving up the start date from March 2 to February 16th, I think. He said the marrow involvement is significant and the report says that cells have formed in "sheets" and "clusters" and that makes him concerned. They are dividing rapidly. Stupid little buggers -- I'm gonna poison them good!!

So that was that conversation.

In other news, my brothers are being blood typed for an allogeneic transplant down the line (KA told me Kathy Giusti had one of these, but from an identical twin which is rare and which obviously makes it easier to tolerate). That's good news because it means Kathy may be cured and I want her healthy and around for a long time to help lead the fight against this disease.

I've worked things out with Disney where I *THINK* I will be able to be covered throughout my illness, provided I can work a bit from home now and then, which I should be able to do. So that takes care of the insurance concern. Afterwards, I will need to be disease free for five years before I'll be eligible for long-term disability...so let's hope this is the only kind of cancer I ever get! :)

I also learned that even if a place (like SH's shop) is not in my healthcare network, they will still pay 100% of costs, it's just a higher "deductible" on that. For in-network places, after the first $2500 of co-payments, 100% is paid. For out-of-network places, it takes $5000 before 100% is paid. Sadly, this is gonna cost me a lot more than $5000 so it doesn't really matter. We're looking at a $2500 penalty (and even that should be tax-deductible) for using SH versus an in-network provider...I can live with that.

Elsewhere on the expense front, I really think I want 24-hour private nursing while I am in-patient and neutropenic (meaning no immune system). That won't be cheap, but I want somebody making sure all my medications are being given, that doctors are consulting each other to watch for side effects and to make sure the right anti-nausea and other meds are being given, to make sure people wash their hands before they come in and out of the room (if I'm asleep, I can't be telling people to do this), etc. With luck, I'll only need this for maybe 20 days or so over the course of treatment. That's going to be a LOT of money, but if I can cure this, it will be worth it.

Okay...that's a big, big update for one day. I'll post more as I know it. The next consult I have will be on Jan 21st with BD. I'm trying to reschedule SJ earlier since Feb 23rd is probably too late (KA thought it might be pushing it to wait 6 weeks...we'll see what BD has to say). We'll also have more on the progression of the disease at the end of the month after I spend a week in Little Rock with BB and his people. KA thinks BB will say I need immediately treatment as well. So putting it off for another full month might be too much.

Feb 16 looks like the first really ugly day for me. But I'm ready. I will overcome this thing.

Cancer picked the wrong guy to mess with!

A visit to Dr. SH...

So I went back to the first doctor, where this all started in mid November, to bring him up to date on my thinking and to try to do something about this rib pain.

He concurred that I need to start treatment soon. I asked him if it could wait until March 2...he thought it probably could but he wasn't certain.  I explained that I had a number of doctors left to see; he thought I didn't need to see SJ in late February but encouraged me to see BB and talk with KA (which I am doing Monday).

I told him I was leaning towards BB's protocol and I discussed my rationale, which he agreed with (more or less).  He did express concern about the amount and different kinds of chemo in BB's protocol, which he said was very nasty stuff.  In particular, the "C" and "E" of the PACE regimen (cytoxan (sp) and etoposide (sp)) are associated with late-term acute leukemia.  In other words, I could survive myeloma only to find myself with leukemia in 15 years time.  And that's not something that has a very good prognosis at all.  So this is something I will ask BB about.

SH also said he wasn't a believer in maintenance therapy -- the continuation of drugs after completion of primary therapy (the transplants).  Velcade, he said, is a very tough drug.  He noted that SF at City of Hope does believe in maintenance therapy...and certainly long term maintenance therapy is a key part of BB's protocol.  So I'll have to figure this out.

SH did say that he would support any decision I wanted to make, and would administer whatever induction, consolidation or maintenance therapy I decided upon.  Although he did think doing the induction in-patient for the first week or so was a good idea since there was a lot of chemo ("poison" as he put it) in VTD-PACE.

I asked about other side effects.  He guaranteed that I would have neuropathy -- numbness in fingers and toes.  In many cases he said it is controllable.  It will likely go away but it can take years as nerves take a long time to heal.  So that's not great.

On the other hand, he said any loss of taste would be temporary -- probably not lasting more than a year and perhaps less than that.  

I have lytic bone lesions on my ribs, and they could lead to fractures if I am not very careful.  I have been prescribed Vicodin for pain -- the only other thing to do would be to start on Dexamethasone, but I want to come into BB's therapy free from any of those drugs prior to starting treatment.  Then the MM cells won't know what hit them. SH did not think I had to worry about spinal compression now or any time in the next seven weeks, so that much is good.  I need to be careful not to lift anything -- not even the kids -- and to report any new symptoms, fevers, chills, worsening pain, etc.

Had a good conversation with the HR people at Disney today -- I'm hopeful that by working here and there through my treatment when I'm not too fatigued, I will be covered throughout my treatment.  I put together a detailed calendar and I think I will be out of the office until December (best case) or January (worst case).

Aaarghh....I just sneezed and my ribs hurt like hell now...

Myeloma waits for no man...

Boy did I have plans. My band was going to headline a festival in late March, my annual Las Vegas trip for the Final Four (watch this be the year UCLA pulls it out), plus some doctor appointments I really wanted to keep. And then there are the projects at work that I'm very invested in that I wanted to see through to fruition.

Alas, not to be. Based on the progression of my M-Spike (to say nothing of the ribs, which I'll have X-rayed tomorrow) Dr. SF thinks I will need to start treatment shortly after returning from Dr. BB's joint at the end of this month (I am certainly Stage II now and probably on my way to Stage III, depending on how many lesions I have on my bones). February is a big month -- Jill has a birthday and there are some things I want to do, people I want to see, etc. before I take myself out of commission for an extended period of time. So I'm hoping I can at least put things off to the beginning of March. Like my father used to say, "we shall see what we shall see."

But what I won't be able to do is put it off until mid-April. Which is a pity.

On the other hand, the sooner I start, the sooner I'll be done.

Unless Dr. KA talks me out of it during my consult with him on Monday, I'll be opting for Dr. BB's protocol...the only question is how much to do out of state versus at City of Hope. I really don't want to disrupt Parker's school, so moving the family to a different state and a different school is out of the question. We have to consider that.

Speaking of Parker, we told her last night. I hadn't planned on it, but my ribs hurt so much and she saw me wincing and moving very slowly. She asked me what was wrong, and rather than give her a half answer about the ribs, I figured now was time. I told her daddy had something wrong with his blood (isn't that weird, Parker???) and that the doctors were going to make me better, but I had to take lots of silly medicine and it was going to make all my hair fall out! No hair on my head, or my arms, or my feet, or my legs, or my eyebrows...no hair at all.

She laughed. She told me to take medicine now so she can see me bald.

It went as well as could have been hoped for. Thank God she's only six and not old enough to ask frightening questions or draw connections.

In other news, got the golf club to at least reduce my membership fees for six months (it's better than nothing). Still have to solve long-term disability insurance issues somehow.

Now drinking: 1982 Chateau Leoville Las Cases. Yum!

Ribs...

It's getting very painful. I feel like with every deep breath one of the ribs on the right side of my body is going to break. I'm going to have to call the doctor tomorrow and see if we can do anything. If I had long-term disability, I would stop work right now.

This sucks.

Bone pain and something of a bummer...

The pain in my back is better and certainly has improved since the golf round, but the pain in my ribs is more persistent now. I'm concerned that I will have to start treatment soon. There were things I wanted to do but this is a disease of inconvenience in many ways.

I'm vacillating between taking advil versus not doing it so I'm cognizant of what hurts, but I'm going to yield to the advil pretty soon.

Upon reading more of Dr. BB's writing, I'm afraid the mild-sounding regiment that I went through with Dr. SF the other day is the "lite" version that he is going to explore in upcoming trials. I don't want the "lite" version as while it will have reduced toxicity, it may also not work as well. So that means I may need to have double the induction therapy that I had seen, which I suppose isn't the end of the world but it's a bummer because I'd taken the fairly manageable doses as a good sign. I'm particularly concerned about staying on high-dose dexamethasone for more than one cycle -- the more I read about the drug (including higher treatment-related mortality rates on it) the more disconcerted I am.

Anyhow, they can't all be good days. Tomorrow I need to tackle long-term disability insurance, ensuring my trip to BB is covered by insurance, and putting together a trust for the kids.

Could a consensus be building?

Had a very productive appointment with Dr. SF at City of Hope. At the end of the appointment, I explained my frustration with the administrative screwups and was put mostly at ease by SF, who indicated that there are ways to cut through the red tape that he'll help me with, and that once I'm in-patient the quality of the care is second to none. I am hopeful that I'll be able to see the effectiveness of the former concept before having to test out the latter.

At any rate, today's meeting was interesting for a number of reasons:

* My monoclonal spike increased from 4 mg/DL on Nov. 11th to 5.8 mg/DL on Nov. 26th. That's not terrific. If it continues at that pace, I may not have until May to begin treatment, which would be unfortunate for both personal and professional reasons.

* Dr. BB's results (again I almost typed out his name) are "impossible to ignore," in the eyes of SF. SF and others are recommending that a national trial be done using this protocol on newly-diagnosed patients and City of Hope is one of the centers that will be participating. He believes this trial would be set up in three to four months -- unfortunately not of much use if I have to do something before May. Here's hoping that protein spike has leveled off or even fallen when they get the results of today's bloodwork back next week.

* We went through BB's protocol in detail, and while it is aggressive and intensive, there are positives. For example, the length of the high-dose dexamehasone treatment is only four days. There are likewise only four days of the PACE chemo agents (although they do have all the bad side-effects, I can be treated for nausea, etc.) and they aren't the megadoses like the Melphalan will be. I will likely be hospitalized for this week of treatment.

* Since I'll have a catheter for the chemo, they can use this to harvest the stem cells. That is a minor victory but it does mean I won't need to have both arms plugged into a machine unable to move. I'll be plugged in but can play a videogame, read a book, type on a computer, etc.

* They can do the entire treatment in the Los Angeles area.

* The popping sound I heard in my back is likely a ligament rolling over a bone and while the back and rib pain is related to the myeloma, until such time as things start showing up in X-Rays, there's no need to go on biphosphonates at this time. At the end of January, we'll have a new batch of X-Rays and we can review that decision.

* My brothers will be HLA-typed for an eventual allogeneic transplant if need be.

* It's safe to take Lipitor, and both curcumin (which he said is being studied) and neutraceuticals (which he said have no clinical trials to speak of) could cause unpredictable results from the battery of medications I'll be on during treatment, so he recommended I go back on the Lipitor and lay off the alternative treatments. Fine with me...as I indicated I'm a big western medicine guy.

In short, this discussion went a long way to moving away from the "BB is two sandwiches short of a picnic" type concern that I started out with at my initial appointment. We discussed some of the nuances in the medications (e.g. thalidomide vs. revlimid, etc.) and some of the reasons that people might not buy into BB's protocol (which boil down to one might be able to get the same results with a less toxic regimen, but we don't know yet).

All in all, with the exception of the rising protein level, it was a very good meeting. I had already been moving towards BB's protocol and now there may be an opportunity to do that with a local doctor that I've come to know and like, which saves the logistic issues of monthly visits to Arkansas for the next three years, plus three months of intensive treatment there.

I'll still be visiting BB in late January, assuming the protein level hasn't risen so dramatically as to require treatment even sooner. I'll have a battery of tests done by BB, which SF will review when he and I next meet on February 3rd. If the levels remain manageable, then I will have bought another month during which I can visit SJ in New York, etc. Then I'll meet again with SF monthly until we're ready to go. I have stuff to do through April so hopefully this can be put off until May. We shall see.

More to come as events merit / I think of it.

No more golf

Well today I tried to play golf for the first time since the diagnosis. My back pain has been present but manageable so I popped a vicodin and went to play. I felt pain on about 80% of the swings, sometimes just a twinge, sometimes enough to make me drop to the ground after a swing. But I was managing. I made it through the first nine holes and thought I would continue. I wasn't scoring very well because it was impossible to swing through the ball -- I couldn't rotate around my spine as I'm supposed to. But I thought just to be able to finish the round was a good goal.

I drove on 10 and the ball was a little low but had a decent draw to it and wound up in the center of the fairway about 170 yards from the pin. I took out my club and swung and I felt like somebody had stabbed me in the back with an inch-thick steel rod. I heard a crack (like a knuckle cracking) and I fell to the ground in pain. I was really scared...I thought for a moment that I'd literally broken my back or at a minimum shattered a vertebrae there. It felt very warm at the location where it was tweaked. The pain was very intense for about five seconds and I thought for sure I was going to have to go to the hospital.

It subsided just enough for me to get to my feet, so I knew my back wasn't broken, but golf was out of the question. I moved slowly back to the cart and called Jill to let her know what had happened. My back is tender now but doesn't hurt. Nonetheless, no more golf until I'm better.

I'm going to see Forman tomorrow morning and will ask him about getting on biophosphonates for the back. They have some side effects but I have to arrest the damage being done.

Separately, I received an email from a a very nice woman named Lois who is 56 and who recently completed Dr. BB's therapy. She is in complete remission and feels very good about the protocol and wonders why anybody in my situation would think twice about it. I will be corresponding with her and another couple of people that have gone through it in an effort to educate myself.

One thing that is becoming a bigger concern to me is the lack of long-term disability insurance. I must find a way to get it as I'm going to be out of the office for more than six months -- probably as long as a year.

Anyhow, that's all the news for today. More to post tomorrow after I see Dr. SF, where my topics of questions will include (a) biophosphonates, (b) how he feels about Dr.BB's protocol, (c) whether he could give me any of the maintenance therapy even if he doesn't want to do the tandem transplants, etc. (d) whether any of the information presented at the recent hematology conference changed his perspective on treatment, (e) what the current state of my disease is given the blood work that we did there a month ago -- and they will do more tomorrow, (f) what kind of HLA typing my brothers and I need to do, and (g) what his colleagues said when he had them review my case.

Happy New Year...and a change in luck

I took Jill out to dinner last night at Spago to celebrate New Year's Eve. Actually, more to say a giant "screw you 2008" but hey, the food was the same.

In 2008, Parker was diagnosed with cone dystrophy, a horrible eye condition that is going to leave her legally blind WITH glasses and with no existing prospects for correction (people, I urge you, support any and all stem cell research). My wife spent a week in the hospital with meningitis. And of course I was diagnosed with incurable cancer (again, support stem cell research). 2008, in short, sucked. Or to use slightly more mellifluous verbiage, as the Queen of England once said in reference to the year where Diana died, 2008 is our "Anno Horribilis."

Luck, it seems, may have started turning already. As you may know, I'm an avid wine collector, with around 4,000 bottles in the cellar. Some of these are relatively inexpensive, many are reasonable, and a few are quite pricey. While I am resolved to beat this disease, I am somewhat mindful that the more expensive wines should be drunk perhaps a bit sooner than I was planning, in part because even if I kick Myeloma one of the things that can happen as a result of therapy is that taste buds can be damaged or destroyed. I might never enjoy wine again.

So I brought one of the gems last night: a 1990 Beasejour-Duffau, which the world's foremost wine critic Robert Parker assigned 100 points and about which he wrote:

I have had the 1990 Beausejour-Duffau a half-dozen times since the in-the-bottle report in Issue #85 (2-28-93). I believe this wine may, in 15-20 years, be considered to be one of the greatest wines made this century. It is in a league with such legends as the 1961 Latour a Pomerol. Beausejour-Duffau's 1990 has always been the most concentrated wine of the 1990 vintage. The color remains an opaque murky purple. The nose offers up fabulously intense aromas of black fruits (plums, cherries, and currants), along with smoke, a roasted herb/nut component, and a compelling minerality. The wine is fabulously concentrated, with outstanding purity, and a nearly unprecedented combination of richness, complexity, and overall balance and harmony. What makes this effort so intriguing is that as good as Beausejour-Duffau can be, I know of no vintage of this estate's wine that has come remotely close to this level of quality. In several blind tastings, I have mistaken this wine for either the 1989 or 1990 Petrus! However, the 1990 Beausejour-Duffau is even more concentrated than those two prodigious efforts. It should be at its best between 2000-2030.

So anyhow, we were enjoying this gem of a wine, having a wonderful dinner, and observing the 30-odd people at three adjoining tables who looked like they were mafiosos. The guy that I assumed was the capo was drinking profusely and at one point started dancing around (I'm thinking at this point it was probably the Greek mob rather than the Cosa Nostra). Anyhow the guy danced right into our table, knocking a bunch of water, our food, etc. on my lap. Thankfully we lost no wine but of course I made a minor fuss out of things and suggested that we grab the remainder of the wine and head home for the evening because I would be upset and unable to have a good time and afraid that if I glared at this guy or his friends we'd be "whacked." :)

Now a few years ago, at an equally nice establishment, the wife had a tureen of lobster bisque dumped on her and the establishment did virtually nothing. After being told that they should be ashamed of themselves, the maitre'd there reluctantly offered to pay for dry cleaning. Pretty pathetic. At any rate, I wasn't assuming we'd get a whole lot more from Spago.

But I was wrong. They cleaned everything up, apologized profusely, brought a complementary split of Krug N.V. champagne (I had brought one for us to the restaurant but that was gone) and advised that the don who knocked the table over wanted to do something nice and had a very good cellar. I said that I'd brought a wine that, were it on their list, would be embarrassingly expensive (and since people seemed to think some of it had spilled -- and perhaps it did -- I did nothing to disabuse them of this notion). The sommelier agreed that my bottle was very nice, but again said the don had a very nice cellar.

At any rate, they brought over a bottle compliments of the don. It was a 1982 Mouton Rothschild, which is about 30% more expensive than even the wine I brought! We took it home and put it in the cellar. Parker writes that this wine, too, is 100 points.

Opaque purple-colored showing absolutely no signs of lightening, Mouton's 1982 is a backward wine. Still tasting like a 4-5 year old Bordeaux, it will evolve for another half century.

At the Philadelphia tasting, it was impossibly impenetrable and closed, although phenomenally dense and muscular. However, on two other recent occasions, I decanted the wine in the morning and consumed it that evening and again the following evening. It is immune to oxidation! Moreover, it has a level of concentration that represents the essence of the Mouton terroir as well as the high percentage of Cabernet Sauvignon it contains.

Cassis, cedar, spice box, minerals, and vanillin are all present, but this opaque black/purple Pauillac has yet to reveal secondary nuances given its youthfulness. It exhibits huge tannin, unreal levels of glycerin and concentration, and spectacular sweetness and opulence. Nevertheless, it demands another decade of cellaring, and should age effortlessly for another seven or eight decades.

I have always felt the 1982 Mouton was perfect, yet this immortal effort might be capable of lasting for 100 years! Readers who want to drink it are advised to decant it for at least 12-24 hours prior to consumption. I suggest double decanting, i.e., pouring it into a clean decanter, washing out the bottle, and then repouring it back into the bottle, inserting the cork, leaving the air space to serve as breathing space until the wine is consumed 12-24 hours later. The improvement is striking. The fact that it resists oxidation is a testament to just how youthful it remains, and how long it will last. Anticipated maturity: 2010-2075.

100 years, of which 65 are left and it's not yet begun to be in its prime. There's a message there. In vino veritas.

I bought the man a nice glass of scotch, gave him the last glass of our 1990 Beausejour, and told him he can knock into my table anytime.

Luck, it seems, is changing already. High time for it. And I will be healthy this year.

Happy New Year to you all.

City of Dopes strikes again...

I'm really starting to be bothered by the utter ineptitude of the administrative people there.

First, they claimed (incorrectly) that I'd been told a week ago about the appointment change, which is frankly a bald-faced lie. Then they said they couldn't get me in to see SF until the 13th, which is too late. Later that same day, PinnacleCare spoke with them when they called back to confirm the meeting that I'd already cancelled. Evidently they claimed I didn't cancel it! Fortunately I told PinnacleCare exactly whom I'd spoken with, and they straightened it out. We left it last night that PinnacleCare would speak with them first thing and they would try to get me in today, and that they would certainly get me in before the 13th as Dr. SF agreed that was too long.

So this morning they still had no time today, but they at least said they could see me "anytime tomorrow or Friday." I offered specific times. Then they said they couldn't do those times. They offered one time, first thing Friday morning. This is a nightmare as it's 50 miles away and in a heavy commute artery, but as this is January 2nd hopefully most people will not be on the road.

So I agreed to this time, and PinnacleCare called them back and left a message. City of Dopes took THREE HOURS (and two followups) from PinnacleCare before they actually said okay to that time, and they then said that Dr. SF was going to personally call me today. I'm actually getting a bit nervous because he wouldn't have that urgency if he didn't think I was progressing more rapidly. So now I want to speak with him.

Anybody want to bet that he didn't call me?

Honestly, this has reached the point where they are so utterly disorganized and inept that I'm not confident in the quality of my care there. My life will literally be in their hands. If they can't get an appointment straight, how can I be confident that they'll give me the right medicine at the right time? I will be on up to 6 antibiotics alone, plus blood transfusions, platelet infusions, medication for the side effects of chemo, etc. etc. How can I trust them to have any clue of what is going on?

It's infuriating.

I don't normally do this, but I'm going to call Dr. F who runs the whole place tomorrow, and I'm going to tell him that I'm rapidly losing confidence in the quality of the care there.

Meanwhile, Dr. KA, a very prominent guy at Dana Farber, has been reviewing my materials and has decided to handle my case personally rather than refer it to his team, which is good. He is a "novel drug guy" as opposed to a "transplant guy" so it will be an interesting counterpoint to the transplant-speak that I've been immersed in, and probably as opposite to BB as one can find short of JB whom I've already ruled out. I'll be speaking with him on the morning of the 12th.

Lastly, in addition to seeing Dr. SJ on the 23rd in New York, PinnacleCare has set me up with somebody at Memorial Sloan-Kettering for the following morning, which can't hurt.

As it stands now, I'm going out this Friday morning to City of Dopes. Assuming that actually takes place, I'll post more information here as it arrives.

Happy New Year.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.