Thursday, October 15, 2009

Halloween in Houston

A sit down, of sorts, with Rifkin today to discuss the "plan." I had my list of questions that Suz and I put together yesterday. We're booked for 3 days of testing MD Anderson starting Oct. 28th. We'll follow that up with a conference call from Denver the following week to receive their recommendations re treatment. To say we're not looking forward to it would be an understatement. Visions of MRI's, Pet Scans, bone marrow biopsies, etc. in Little Rock haunt me. We're assured MDA is not Little Rock, although we're also told to expect the full workup. Rifkin has already discussed my case with Dr. Giralt at MDA. I say that my conversations and the paperwork from MDA look like they are planning another transplant for me. Rifkin says they will probably recommend a mini allo transplant (from one of my brothers) if we can get my cancer levels down with chemo first. Nothing set with Mayo yet except we're told I don't qualify for the current pomalidomide trial because I did not fail to respond to revlimid. As noted in the previous post, Mayo will be starting another pomalidomide trial, maybe as soon as November, that will not require a revlimid failure to be eligible. So, following the MDA workup, we'll take a trip to Mayo in Scottsdale and at least get on the list for the next trial. Rifkin instructed us that our job at MDA is to learn as much as we can, ask many questions and bring the info back to discuss with him. As he said, these are the people that are running the clinical trials with these new drugs and have the most knowledge about how people respond, side effects, etc. So, I guess I'll put on my best lawyer interrogation hat and try to get that Ph.D. in hematology/oncology.

The idea of a mini allo transplant is disconcerting. Over the years, and with the various doctors and nurses who have treated me, we have heard all points of view. We've heard from both Rifkin and Barlogie that it is very risky and also that it can be a true cure. I guess both statements are true. It seems that Rifkin's goal is to find a treatment for me that will bring my cancer levels down and then deal with the question of whether to take the risk of a mini allo transplant. Since there is no way to prepare for making such decisions, we try to put that issue on the shelf and deal with it if and when we have to. I will say this much: Rifkin has managed to stabilize my disease so that we at least have a chance to participate in a clinical trial and bring down the disease levels. In May and June when I was getting regular transfusions and neupogyn shots I was not very optimistic. An every other day dose of prednisone has done what massive amounts of chemo could not---keep an angry disease at bay. Go figure. Rifkin was clear, however, that this won't hold forever and so now is the time to start treatment.

Final note: counts remain stable and continue to slowly go up. White count: 4.4, hematocrit 28, hemoglobin 9.6, platelets 122. No IGGs to report. The cancer center hasn't yet received its doses of H1N1 vaccine (swine flu) but because Julia is a health worker she will get her vaccination next week and can also get the vaccine for any family member in a high risk group (like me being immunosuppressed). I will be taking advantage of my connections in the health sector!

I'll check in once we return from MDA. Until then, Happy Halloween.


EJ & Roo said...

good luck at MDA. my prayers are with you.

Nick said...

You and your remain in our thoughts and prayers, Dan! I hope everything goes smoothly in Houston!

Make sure you get the DEAD flu vaccine (injection, NOT nasal spray!) rather than the live one!


Nick and Jill

sigun said...

Dear Dan,

We will be thinking of you and praying for you on Oct. 28 even more than normally. Bises, Sigun.

Susie Hemingway said...

Good luck from us. We hope all goes very well on the 28th.
Susie and Hamada Hemingway Moursi(UK)

Jill Knight Photography said...

I've been reading your blog regularly for the past couple of months (my dad was diagnosed with MM in May 09). What a roller coaster that has been - not a good one (he didn't even have 1 month of a "remission" after his induction therapy, couldn't even harvest his stem cells b/c M came back so fast). I pray for your continued amazes me. I just forwarded my dad your blog - in hopes that he will take some time to read it and that it will be an encouragement to him. I hope this new trial offers some light for you....

Jill in AZ