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The Germans let us down again

Very quick update:

My potential German match is a 1 Antigen Mismatch--not a perfect match. I believe it is something that the Fred Hutch in Seattle could use. Waiting to speak with them on Monday.

Went to Hopkins on Thursday and spoke with Dr. Jones (not of Indiana fame). Marcy and I feel better about the Haploidentical, mini transplant using my father. He is a 10 out of 12 match. My mom is a 8 out of 12. There is no data on long term success. This approach relies on a couple of things. First, my father is 10 out of 12 on the testable antigenic markers There are also over 120 markers that can not be tested for compatibility. Conventional thought is that since he is 1st degree related, a much larger portion of the 120 would match then in an anonymous match (like my German mismatch). Dr. Jones feels that it is these 120 markers that influence the degree of Graft Vs Host Disease. Second, instead of high dose chemo and radiation, we would rely on the donated immune/marrow system to clean house. This is called Graft Vs Leukemia. The chemo is predominantly used as a immunosupressant for my immune system before the transplant then as a mechanism to re train my new immune system to play nicely with my body.

The latest protocol for the Haplo transplant has 5 out of 6 people alive ranging from 3 months to about 1 year out. We got to meet Landon who had this procedure done in December, 2002. He is doing well. His first transplant, autologous (self), failed in relapse. This was his only option becuase there where no anonymous donor matches. He used his sister. He has Non Hodgkins Lymphoma.

Dr. Jones stands by that this is my best and only option. He is deeply against a mismatch, conventional transplant. The Hutch has the oposite stance....of course. He claims that the Hutch had shut down their mismatch BMT program becuase of poor outcomes (read l see dead people) What makes the story more interesting, the Dr. that developed the protocol with Dr. Jones at Hopkins left a year or so ago and went to the Hutch-- Dr. Paul O'Donnell. I spoke with him and traded some emails a few weeks ago. I am going to have a serious conversation with him. The first protocol, and the subject of this paper, has a pool of 13 people; 7 of which have died. The article was submitted January of 2002. I am trying to track down updated stats on the remaining patients.

Dr. Jones coauthored this paper(with several others) and has since modified the protocol. They use a second dose of Cytoxan (Cyclophosphamide) post transplant to "reboot" the chimeric (mixed) immune system. This, according to Dr. Jones, is the KEY; 5 out of 6 are proving this out--engraftment, low GVHD (Graft Versus Host Disease) and remission. This procedure is all out-patient unless I get sick. Landon said it was much, much more tolerable than his first, conventional BMT.

FYI, I met with Dr. Cohen on Friday and there is no evidence of cancer in me currently. Don't get excited. The current state of genetic testing (FISH/PCR assays) can only detect greater than 1 million cells. So, I could have 0 to 1 million cancerous, lymphocytes floating around. They don't know. Given the Philadelphia Chmosome adnormality I have, there is less than a 5% chance I am truly cured. We will never know since waiting could cause a relaspe and then I am in a world of hurt (if that is possible). Remember, the cells that come back have proved that they are resistant to all the chemotherapy to date. Darwinism in action.

So, as eloquently put by Dr. Jones, it is impossible for me to make a informed decision because there is no sufficient, long term data. Mismatch Seattle vs. Mini, Haplo Hopkins. Univ of MD is out since Autologous has poor, poor data for relaspe and I have other options (crappy ones, but options non the less).

Dr. Cohen has voted in for Hopkins. He said 5 out of 6, 1 year out is pretty good. Dr. Jones is convinced this procedure is how all Bone Marrow Transplants will be done in 2 to 3 years. He is a cockey fellow--healthy ego as well.

Dr. Cohen has given me a few weeks without any Chemo. I am going to grill Dr. O'Donnell and Dr. Fero at Seattle, get updated numbers from Hopkins and consult the magic eight ball. Mean time, Marcy and I are off to Disney/Universal in FL this coming weekend. My last hurrah before some form of BMT. We need to make a decision in the next 2 weeks--transplant (which one), or more chemo and wait for a perfect match (not likely).

As always, sorry for the typos and grammar....cut me some slack!

If anyone sees the answer in their pile of mash potatoes, please email me when you get the chance.



Posted by: Gary on May 17, 03 | 9:21 pm | Profile


What timing! Chris and I were in Disney this past weekend - if we had waited a week, we could have hooked up with you guys.

Have a great trip!

Posted by: Michelle G on May 19, 03 | 8:14 am

Wish we could do the Disney trip with you guys, but since I had enough trouble keeping up on the boards at OC, we are out.

Posted by: K. Zarubaiko on May 19, 03 | 11:26 am

Hope you can get a babysitter while at Disney, and go to the Cirque du Soleil, followed by several cold beers out on the piazza and a night full of stars.

Posted by: Susan Stiles on May 19, 03 | 4:16 pm

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