donor list-match procedurres

[donna j.]

I was just told by my cancer hospital team that only 30% of people waiting for transplants get matches. Is this true? I was also told that from now to New Year's is a bad time to need a donor as people are busy with holidays? Is this true? I found out after speaking to someone else, a request for 2 donor matches was made 3 weeks ago, but no response to date, is this typical? I was also told I was 8 of 8, what does that mean? The person giving me the information felt it was a good thing.

Thank heaven you are here. Major questions and little answers. I still need to satisfy my question of if the risks of transplant outweigh where I will be without a transplant.

[Marlene]

I can't answer any of your questions on finding a match but you may want to explore what Johns Hopkins is doing regarding half match transplants. They are having good success with them. Here's the thread on it:

http://forums.marrowforums.org/showthread.php?t=2250

[Neil Cuadra]

Originally Posted by donna j.

I was just told by my cancer hospital team that only 30% of people waiting for transplants get matches. Is this true? I was also told that from now to New Year's is a bad time to need a donor as people are busy with holidays? Is this true?

The chances of finding a match are hard to pin down. First of all, people with siblings may find a matched brother or sister, and the more siblings they have the better the chances of a match. For unrelated donors, the chances of finding a match depend mostly on two factors:

• your antigen type (your "human leukocyte antigen", or HLA, type, determined by genes). It's something you inherit from your parents. If yours is a common HLA type then many more people in the bone marrow registry are likely to match you.
  
  
• your ethnic background or race. The bone marrow registries have a much larger percentage of people of European ancestry than from African, Asian, or other ancestries. You are most likely to match somebody from the same ethnic background or genetic family. If your "family" is well-represented in the bone marrow registry your chances of a match are better. If it's underrepresented the opposite is true. This is why there are special bone marrow registry recruitment efforts for minority populations.

Perhaps the statistic you heard is that about 30% of those seeking a donor find a match among their siblings. The other 70% have to look for unrelated donors in the U.S. bone marrow registry or the registries of other countries.

I found out after speaking to someone else, a request for 2 donor matches was made 3 weeks ago, but no response to date, is this typical?

If it's a request to the National Marrow Donor Program (NMDP, which goes by the name "Be the Match") for preliminary matches then I'm surprised it would take that long. They have databases of about 16 million donors and half a million cord blood units globally so searching them to find potential matches should be a quick computer operation. However, confirming that a potential match is an actual match could be more time-consuming because they may have to contact and do further tests on potentially matched donors. You can read about the overall process here.

I was also told I was 8 of 8, what does that mean? The person giving me the information felt it was a good thing.

That means they are comparing your HLA type to a specific potential donor, and all 8 of the HLA characteristics they compared matched. That is indeed good news and also shows that at least one potential donor has been found.

I suggest that you ask to speak to the person at your treatment center who manages donor searches and coordinates with the NMDP. They should be able to fill you in about where you are in the process of identifying potential matches. The physicians are not the ones who manage the process so you want a more direct source of information.

[donna j.]

Thank you for your response and thank you for the website. Your answer poses more questions as I was speaking with the donor coordinator. She said she wished there was an easier way by computer! When I questioned the transplant dr. originally about cord transplant, she said I was too big, that there would have to be more than 1 cord, and they did not use them on adults. Is this not true?

I still don't know based on my diagnoses if a transplant is the only way to go.
My primary Oncologist-Hemotologist said I was RAEB-1 (with fibrosis) but classified ISS-2. He said his main concern is on July 2010 my blood was fine ( as always had been) and on July 2011, all blood cells were very low, and dropping.

I am ready to have someone provide a second opinion who is known to be very knowledgable in the field of MDS. Can anyone recommend someone in or about the tri state area? I live on Long Island but would travel to Boston or Maryland if I could get a competitent evaluation.
Again thank you,
Donna

[mausmish]

Sloan-Kettering in New York, Dana Farber in Boston, and Johns Hopkins in Baltimore are all top notch facilities. I had my BMT at Hopkins last year. My doctor was Richard J. Jones, the department chair. I believe Dr. Steven Gore is the resident expert on MDS there. I'm sure others in these forums can recommend specialists at the other locales. I recommend consultations with all three centers. Transplant is a difficult decision, and each facility has its own protocols. Find the one that feels like the bet fit for you.

[Neil Cuadra]

Originally Posted by donna j.

When I questioned the transplant dr. originally about cord transplant, she said I was too big, that there would have to be more than 1 cord, and they did not use them on adults. Is this not true?

It's correct that they usually need to use 2 or more cord blood units on adult patients (unless they have small bodies), but transplants are indeed performed this way. Perhaps what the transplant doctor meant by "they don't use them on adults" was that they don't do cord blood transplants for adults at that treatment center, even though they are done at other treatment centers.

With cord blood you don't need as close a match between the patient and the donor as with bone marrow or stem cell transplants, which is why it's often possible to find multiple cord blood units with a good enough match. It's still true that the closer the match, the better.

[donna j.]

Again, thank you all. I will pursue the 2nd opinion and ask additional questions regarding a donor. Going in for blood transfusion tomorrow (3rd one and had day 5 of 2nd round of vidaza today). Trying to maintain a full time job through all this!