Quick update form the Hopkins visit. My sister, based on the preliminary genetic findings is not a match--the term they used is a disparate match (nothing in common). Interesting news on my new options. Here is the complete list in order of preference:
1. Sibling Complete Match [Not Happening :-( ]
2. Allogeneic Transplant (Anonymous Donor) Complete Match [Fingers crossed]
3. Autologous Transplant (My own marrow, scrubbed)
4. My parents (mini transplant, I need to research)
5. End of options. Game Over.
So, given the list, I am definitely getting a transplant. As we move down the list, the risk grows. Graft Vs Host Disease (GVHD) is the main concern for option 2 and 4 (big time here since I will only be a half match). Option 3 is borderline experimental with ALL Ph+. They have done this in 20 patients. 15 have done well--meaning they are currently alive, in remission for 2 years or less. There is no long term data on option 3. Remember the trick is getting rid of the bad cells when filtering my blood. Here is the crazy catch. The drug that they would use to scrub my blood was made by a company that is now out of business. There is no drug available. Another company is working on producing it but the timeframe is unknown.
The final HLA typing for me should be done by Friday. From this, Dr. Jones can classify me as likely-to-match, so-so chance, unlikely-match (these are my terms). Statistically, the current marrow registries represent the population for White Europeans. He can tell, by my HLA typing, the likelihood of finding an anonymous match. This news should be to me on Friday. If unlikely, I suspect we head to option 3 immediately since I am in a great remission at the moment. If so-so or higher, the waiting game begins...again.
Dr. Jones was much more clear-cut regarding the role of the Philadelphia Chromosome than Dr. Cohen. In so many words, he said the defect is in a stem cell. This stem cell, because of the Ph+ mutation, is immortal through normal life (does not die on its own). This stem cell is highly resistant to chemo therapy. He said there is a less than 1% chance I am truly cured now. He expects me to relapse in 3 to 6 months. 2nd remission is much more difficult to achieve due to the more resistant lineage. We want to get to a BMT as soon as possible while I am in 1st remission. The BMT with the associated Chemo and radiation will kill all of my marrow stem cells-good and bad (remember there are all kinds of stems cells, liver for example).
Physically I am fine for the BMT and in fact he did not find me too over weight
So, regarding the odds game, I am much more unclear. Options 4 and 5 have no long term data associated with it although Dr. Jones seemed pretty optimistic given the results at Hopkins. In fact, they are pioneering the techniques for option 2 and 3. My best bet now is a complete match from an anonymous donor with little GVHD response. We want some GVHD since the donor T-Cells attack any leukemia cells.
Regarding those that want to be a marrow donor. Here is the high level scoop. If you are white, you have to pay to give blood ($50 I think)and get on the list. Why you ask? As I mentioned earlier, statistically, the marrow database is good to go for white Europeans (descendents). If you are anything else (black, Asian, Hawaiian, etc.), you are encourage to register--free of charge. There is next to 0 chance anyone could donate and it would be a match me. I appreciate the offers and I encourage you to get in the registry and possibly help someone else.
There are 12 markers (I thought 6) that they can test. However, there are over 120 antigenic sites that they can not test. The 12 are the biggies, the other guys cause GVHD to varying levels. Provided I do not catch an infection, the risk to me is the GVHD and that is what I would die from--probably liver failure. Not to end on a somber note. It would have been awesome if my sister matched. But I am still encouraged that I have 2 viable options where I thought I had none (Dr. Cohen said autologous is not an option and my Parents as donors was never mentioned). Believe it or not, I am slightly more encouraged since the meeting today than prior. I never really expected Holly would match me. 25% odds way too low
When I get the HLA Profile from Dr. Jones, I will post up the findings. Maybe I will get some nice Italian Gent's marrow. I believe I get the donor's name, if he/she allows, after 1 year. That would be a cool visit.
I will be starting a poll on what everyone thinks caused my leukemia. My personal vote is my Diet Pepsi habit. I figured Pepsico is a nice sized company to sue
Untill I type again . . .