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Decisions, Decisions (work in progress)

Well, the time has come (actually lack of time now) for me to make a treatment choice. I have been in remission for 4 months now. My disease has a high relapse rate which usually occurs 3 to 6 months. If I relapse, I am much, much worse off. If I had to choose today, my only option is Hopkins since no suitable donor (perfect or mismatch) has been located.

Seattle, in the early stages of their searching have found 2 matches that are 6 out of 6 (1 Canadian, 1 US). They need to further type these people to see if they match the rest of the 6 antigens and asscoiated alleles. This process could take months: find them, see if they are available, get samples, HLA typing, consulting, then transplant.) Seattle feels I should continue aggressive chemotherapy until these people are typed out to see if they are suitable. They say, best case, 2 months before a transplant could happen.

Hopkins feels I should have had the haplo-mini tranpslant a month ago.

Personally, I do not think I can wait much longer. Every journal article I have read draws a coorelation between time to transplant from 1st remission to general outcome--longer=worse.

Here are the Pros and Cons of the options as I see them. I will keep adding to this list as I gain information and the Drs. answer my questions (I have been a royal pain in the ass to these Drs. in my quest for information)

Hopkins: non-myloblative, haplo Identical mini-transplant

Mechanism of treatment
Relies on Graft vs. Tumor (Leukemia) effect to kill the cancer and the rebooting of my chimeric immune system to stop severe Graft Vs. Host Disease.

Out Patient.
25 minutes to hospital.
My marrow is not destroyed so if I reject the donor, I can recover.
Relatively light chemo and 1 dose of radiation.
Graft vs. host Disease appears to be minor so far in the new protocol.
Door open for traditional transplant if I relapse.
Leukocyte infusion from donor if I relapse.
Phase II study has 5 of 6 patients alive with 1 relapse (longest alive so far, 9 months).

Experimental, Phase II study.
Phase I study had 20 of 26 patients die.
Graft vs. Host Disease.
Only short term data. 9 months out of survival.
Unknown how well Graft vs Tumor will work against ALL, Ph+.

Seattle: Ablative, full, mismatched transplant

Mechanism of treatment
Relies on intense chemotherapy and radiation to kill my marrow system; including cancerous stem cells. Since it is myloablative (destroys everything in the marrow), the donor marrow is all that the patient has to restart a new blood system.

Well known and studied protocol.
If patient survives, good chance of being cured.
Seattle is the epicenter of Bone Marrow transplants (400 per year).

50% mortality related to the treatment (since a mismatched donor is used).
Graft vs. Host Disease.
High chemotherapy and radiation with the associated sicknesses.
Fatal infections possible since there will be no immune system for several weeks.
Blood and Platellet tranfusions needed while marrow is wiped out.
Travel to Seattle.
Hospitalized for 4 to 6 weeks.
In Seattle for up to 3 to 4 months if no major complications.
If I reject the donor marrow, it is fatal.

Wait for a perfect donor

Mechanism of treatment
If a perfect match is found, then a traditional, myloablative transplant would be done. Seattle has 2 possible matches that are typed out to 6 out of 6. The remaining typing needs to be completed which would follow that same course as before: locate the donor, see if they are available, get sample, HLA confirmatory typing, consult, transplant. ETA best case, 2 months. Probably more like 2 to 4 months.

Perfect match anonymous donor is my best option given my sister is not a match.
Well known and studied protocol.
60% or higher cure rate.
If perfect match found, transplant can be done at Hopkins, not Seattle.

Waiting for the perfect donor may cause me to relapse which is bad. Resistent Leukemia cells are dominant and much more diffcult to get into remission.
Continued consolidation chemotherapy to try to keep me in remission which is toxic to my body.
With continued chemotherapy, Treatment Related Mortality (TRM) climbs since my body is beat down.
General trend: as time to transplant grows, mortaily climbs.

more to come . . .


Posted by: Gary on May 31, 03 | 6:24 pm | Profile


Hey, where's the voting? I want to vote for Mexico City. They always seem to be on the cutting edge. Peach pits, etc.

Posted by: Gary on Jun 01, 03 | 5:39 pm

I agree with Gran! I think we should all go sit in the driveway and drink beer or what ever it was that we use to drink when we were young GT's. My grandmother says white raisins soaked in gin cures everything.

Posted by: K. Zarubaiko on Jun 02, 03 | 11:51 am

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