Consider cord blood transplants if no bone marrow donors available

[SimonChai]

Hi, everyone. I’ve noticed there seem to be a few people on our list looking for bone marrow donors who are unable to find matches.

I just wanted to bring up the alternative–albeit newer–treatment of a double-cord blood transplant. I had one myself last April when Fred Hutchinson Cancer Research Center could not find a donor for me. So far, the transplant has worked.

Not all transplant centers are doing them, but I believe the treatment is becoming more and more popular, given that one doesn’t need as close a match as one does with bone marrow transplants and the success rates are encouraging.

The University of Minnesota pioneered the protocol that I’m in, but other centers also offer double-cord blood transplants. I am hardly an expert on the topic but if anyone wants to know more, I’ll share what I do know.

Just wanted folks who can’t find a bone marrow donor to know that there could be an option for them. So far, I’m doing well; will have my next bone marrow biopsy at the end of April. I was considered in remission in August and am keeping my fingers crossed that my new immune system is still in charge!

Hope everyone will have a good weekend.

[sarah]

Hi Simon,
i have thought of you often and wondered how you were doing. what a great update. you have been blessed. my husband is one who never had a bone marrow match. we went to university of minnesota in oct of 05 after learning he had a double cordblood. it was not a perfect match but we thought it was an answer to prayer. we checked into induction chemo here in a local hospital for what was to be 30 days of chemo. that 30 turned into 61, the day he passed. he never made it to minnisota. although my husband did not get the chance, i am so very happy that this is available to those who cannot find a suitable bone marrow match. i pray you continue to regain your health.
god bless you,
sarah

[SimonChai]

Thank you so much, Sarah, for your kind words. Yes, it’s true. I have been blessed and believe me, I try to remember to appreciate my good fortune every day.

I am so sorry for what you and your husband endured. What an awful disease MDS is.

But I’m glad you are still on our list as I also think about you and your husband. It’s so good to hear from you.

[jaxem]

hi, ms chaitowitz

my wife was dx w/ mds about a year ago. siblings & search failed to get a match but we found a match with a double cord as you had. great to hear you’re doing so well with it. sorry to hear about sarah’s husband. it’s such an incidious disease. my wife is 67 & we’re told that complete remission (<< 5% blasts) is required if the transplant is going to work. the transplant will be done @ Sloan-Kettering in NYC. the director there set up the program about 2 years ago and spent 9 years at Univ. Minn. my wife is going through dacogen treatment currently which i hope will achieve the total remission req'd. can I ask how old you were at time of transplant, degree of GVHD you went through, time you were tied to the hospital, amount of time doing blood checks, etc. thanks for your reply. i wish you all the luck in your fight. jack moreno

[SimonChai]

Hi, Jack. Nice to hear from you. Sounds like you and your wife are in good hands at Sloan-Kettering.

To answer your questions:

* I was 53 at the time of the transplant.
* I was in the hospital about two and a half weeks for the transplant (although I spent another three weeks in the hospital before and after the transplant for induction chemo and other reasons).
* I ended up with GVHD of the gut and mouth. The mouth GVHD is very mild and I don’t treat it but my gut GVHD has been a problem. I haven’t been able to get off Prednisone and Cyclosporin because of it. Whenever I’ve tried to taper off of these drugs, the GVHD comes back. But I’m on another taper now and so far, so good. I am keeping my fingers crossed.
* The first few months after the transplant, I had my blood taken frequently. I can’t remember exactly how much–maybe a few times a week. Now, 10 months post-transplant — I only go in for blood checks every two weeks.

Please let me know if you have any other questions. Is your wife having a reduced-intensity transplant? I wish you the best! I will be thinking of you both.

[jaxem]

ms chaitowitz

yes re reduced intensity or “mini” transplant. she getting the de-methylating drug Dacogen (decitabine) for 2 cycles (she’s in her 1st cycle now). after that, a BMB which hopefully will get her into remission (she had 5-8% blasts at last BMB). do you recall your blast %age prior to transplant? thanks for getting back to me.

jack

[SimonChai]

Hi, Jack. Please call me Simon!

My blast count before I went to transplant was about 2 percent. Unfortunately, I had to do induction chemo and a round of Vidaza to get my blast count that low. (They wouldn’t do the transplant unless my blast count was 5 percent or under as I was part of a study that had those requirements.) When I first was diagnosed, it was around 5 percent (I think) but it creeped up to 13 percent just before I was supposed to have the transplant. So, then I did induction chemo but it didn’t work well enough. My blast count was still too high–around 7 percent. So, then I did a round of Vidaza and Enbrel (also a study) and my count went down to around 2 percent.

[celebrations]

Hi everyone, could you explain, in what cases there is going to be a transplantation, and in what cases the docs prefer supportive care only, such as medicaments and transfusions???? Please inform me, I am from Germany with MDS-RARS, thanx.

[SimonChai]

Dear Celebrations: I am not an expert on your question, but in my case, the doctors recommended a transplant because they said that my MDS would evolve into leukemia and that I had probably had only a year to live. In my case, they said the transplant was the only curative approach–if it worked.

[katiebear]

Jack,

Who is your doctor at Sloan?

[Author]

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