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.


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