Friday, December 26, 2008

A few more things before my return to City of Hope...

Well, I've come a long way in terms of my knowledge of the disease since the last time I met with Dr. SF. He told me that on some level (not including biochemistry) I would come to know as much as he does and I feel like I am on my way at least.

Some other odds and ends:

* I spoke with my friend RH's dad DH, who had an allogeneic transplant six years ago. He didn't know why his doctor, Dr. RC, had gone in that direction and seemingly wasn't aware of how risky they are. He took a much more hands off approach to his treatment decisions than I am taking, that's for sure. I want to seek out Dr. RC for a quick phone call to learn why he went that route. Does he know something about allogeneic transplants that the rest of us don't?

* I've begun corresponding with WT, the friend of my good friend Dr. BM's father, who had a SCT for MM ten years ago and is doing well. Like DH, he was a bit more hands off than me in treatment research but he's been very helpful in telling me how he responded to the SCT and what to look for.

* I've also begun corresponding with an American living in Italy who is still in Stage 1 but who has avoided all these aggressive treatments in favor of taking curcumin, otherwise known as the spice turmeric, in capsule form and that has stabilized her disease. I wonder if there is any merit to this? This is something to discuss with the integrative medicine specialist at Sloan Kettering.

* I've determined the remaining doctors to see are: Dr. KA, Dr. SJ, Dr. DW, Dr. BB, and potentially Dr. MG. I'll also have a phone call with Dr. BD. That will mean 9 doctors in total, which is a lot but at least I kept it in the single digits. Oh...I guess if I have the phone call with Dr. RC that makes it an even ten.

* Dr. BB requires a full week in his center where they insist on doing all new tests. It can't hurt to have another bone marrow, particularly since he agreed to sedate me for it. PinnacleCare was able to reduce the stay there to four days. I can catch Dr. DW on the way back since there are no direct flights to where Dr. BB is anyway, and I have to fly through where Dr. DW is. That trip will be the last week in January -- which means I'll need to reschedule my meeting with Kathy Giusti. A pity.

* I have an appointment with Dr. SJ on February 23rd -- the earliest I could get in to see him as he is out of the country the entire month of January. While on the east coast, I'll see Dr. KA as well. If I determine it's worth it, I can fly back through Minnesota and see Dr. MG. Unfortunately, he won't take a consultation by phone. I'll also try to meet with Kathy Giusti while back east.

* Most of these are consultations, not a full blown exam. The only exception would be Dr. BB since he has so much proprietary testing that can be done down there.

* My stupid insurance carrier is saying they will only pay for one second opinion. Now, I don't mind going out of pocket for some of these, but considering I have two types of doctors that I need to work with -- an oncologist and a stem-cell specialist -- it seems ridiculous for them to limit me. Additionally, I'm concerned that they may take my Dr. SF as a second opinion, or worse yet what would probably be a $300 consult with Dr. ML as a second opinion, leaving me exposed on $30,000 worth of stuff with Dr. BB (a PET scan, an MRI, the blood work, the bone marrow, the gene workup, etc.). I've hired a company called CoPay Solutions, who along with PinnacleCare will try to fight that battle.

*I've done more research on Dr. BB's treatment protocol, and have called Dr. SF's office to remind him to pull up the information so we can discuss it. Essentially it involves the following:

(1) Intensive induction therapy including a battery of SEVEN drugs: velcade, thalidomide (which we'd replace with revlimid, i think), dex, plus PACE (cisplatin, adriamycin, cyclophosphamide and etoposide -- all chemotherapy, I believe) for one cycle -- only one month, I think.

(2) stem cell harvesting, following by high-dose chemo with melphalan followed by autologous stem cell transplant

(3) recovery period, during which "consolidation" drugs are given -- formerly thalidomide and dex but probably revlamid and dex.

(4) second autologous stem cell transplant 2-3 months later (again preceded by high-dose melphalan)

(5) maintenance therapy, consisting of weekly velcade plus DTPACE (or DRPACE in our case) for the first year, monthly velcade plus thal-dex (or rev-dex in my case perhaps) for the second year, and then thal-dex or rev-dex alone for year three.

This sounds unbelievably aggressive. Dr. BB's approach is to throw literally everything we know at the disease because it has many ways of replicating and each solution only blocks part of it -- throwing everything at it cuts off almost all ways of it coming back,

My questions related to this approach, which I'll ask Dr. BB directly, are:

(1) The PACE drugs have been shown to be less effective than thal-dex, let alone rev-dex, let alone velcade plus rev dex. Is it possible that the benefit of the PACE drugs has been superseded by these others?

(2) Have two SCT's been shown to be better than one, provided complete remission is achieved after one?

(3) Same issue with PACE for maintenance, and should rev-dex be used instead.

The other thing to point out is that BB uses velcade plus DTPACE for only one cycle in his Total Therapy 3 protocol (the one outlined above) to reduce toxicity of the treatment. But others suggest VRD alone for four cycles. Which is better, and why?

That's all I've got for now, folks. Happy Holidays. I'll go back in next Tuesday, and I'll report anything of note in the meantime.

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 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 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.