We've finished our consults with the doctors here at M.D. Anderson and now I just having testing to complete over the next 2 days. We also have a few tests that will be done in Denver (bone marrow biopsy and skeletal survey.) We met with the head of the transplant team (Dr. Giralt) and the head of their myeloma treatment team(Dr. Orlowski). Dr. Orlowski and his father developed velcade. These docs are going to communicate with Dr. Fonseca at Mayo in Scottsdale regarding my case and get his input as well. So, at a minimum I feel I am getting the best advice possible from the best myeloma treatment centers in the country. (Dr. Barlogie, Dr. Rifkin, Dr. Giralt, Dr. Orlowski, and Dr. Fonseca). Unfortunately no one has a silver bullet for this disease. The short term strategy is to add a chemo drug to the prednisone to try to get the cancer levels down. Orlowski recommended revlimid. Giralt talked about pomalidomide and bundamistine (sp?). We'll be discussing this with Giralt by phone on Monday and we see Rifkin on Wednesday. Mid term strategy is to be ready for a mini allo transplant (from one of my brothers) if we get my cancer levels down. It seems that it is very unlikely, given the resistant nature of my myeloma, that any chemo drug would give me remission or even long term nonprogression of my disease. So, we have to consider the mini allo transplant with all its attendant risks.
One of the interesting things Giralt is working on is use of a vaccine as part of the mini allo transplant. They would take some of my myeloma cells, kill them, then inject them into my donor to provoke an immune response before transplanting the donor cells into me. Because the myeloma cells are dead cells, this process presents no additional risk to the donor.
We'll make some decisions next week, I suspect, at least with respect to the short term strategy. That's it from Houston for now.
Dan
5 comments:
I'm glad to learn you have some of the best minds in the MM world devising a plan. I believe that doctors and researchers are essentially problem solvers. Your myeloma is challenging them to be creative and therein lies the answer, for you and others.
Yes, it is indeed reassuring that you have the best specialists in the country working on your case. Looking forward to hearing what they will come up with for you next week. Bises, Sigun.
Dan,
This blog, www.lobo4.blogspot.com
is written by a young guy from my neck of the woods(Jersey) who had a full allo out in Seattle using his sister's cells in Jan.'08. It's a worthwhile read from a bright and very funny guy. His girlfriend calls him a Kevin-Kelly hybrid now.
He's doing super. This site is from a 60-ish guy who had a mini allo at our hospital 2 years ago this month, also with his sister's cells. He has not posted recently(I think he is travelling with his wife) but he blogged about the whole deal. www.caringbridge.org/visit/lenbrzozowski
Interesting to hear this immunotherapy thing they are talking about. When Tim was first dx'ed, the farm wife across the street from Tim's folks' Vermont vacation home told he she knows a man who had some kind of cancer and the docs said they had nothing more to do for him. He injected a dairy cow with his disease and began drinking the raw milk and making yogurt from it. (Immunities are passed in breast milk.) This woman said he was doing well and had already far outlived the time frames the doctors had given him.
I guess I shoulda asked how the cow was making out. ;o) She offered to supply a cow if we decide to go that way!
I feel it's a LITTLE beyond my field of expertise but it sure sounds good in theory.
I SHOULD HAVE SPECIFIED: The man did NOT kill the disease cells first before injecting them. Big difference. Hence the "joke" about the cow.
Sounds like some good minds are working for you. We'll see you sometime soon. You're always in our thoughts and prayers.
Mike and Marta
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