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AA Aplastic anemia

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  #1  
Old Sat Jan 12, 2013, 09:05 AM
JodyW JodyW is offline
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relapse, 2nd ATG, when do they look for BMT match

My son began to relapse about a month ago and after a bone marrow biopsy the doctors decided to do a second round of ATG over a 4 day period. They are repeating horse again. My question is when should they begin to look for a donor for a BMT. Trevor is 24 and this is the second round of ATG in less then 2 years. Since he is biracial I know his chances of finding a match are lower so do you start looking sooner or does one have nothing to do with the other. I'm concerned this 2nd round isn't going to fix this and want to pursue other options as back up..
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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Old Sun Jan 13, 2013, 02:50 AM
Neil Cuadra Neil Cuadra is offline
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Jody,

Medically speaking, the sooner you search the better. Sometimes matches turn up right away, but with Trevor's background, as you say, it may not be that quick. For peace of mind, the sooner you know if you have the transplant option the better.

Financially speaking, insurance may not cover donor search expenses unless the doctors have indicated that the transplant option should be explored.

You can bring this up with Trevor's doctors, after which you might check with the treatment center about costs and procedures and the insurance company about coverage.
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Old Sun Jan 20, 2013, 10:49 AM
JodyW JodyW is offline
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Thanks Neil. The doctors at the James Cancer hospital said they were going to begin a search, but I have received differing opinions from Hematologists regarding who Trevor can get a donation from and was hoping someone could clarify. I have been told that since Trevor is bi-racial he should only have a bi-racial donor. Others have said it doesn't matter as long as its a 10/10 match. Also , wondering if you could clarify the difference between a 10-10 and an 8-8. I entered Trevor's HLA info in to the Be a Match tool and it shows he has 509 potential donors at 8-8. Is 509 on that tool a good number or not and why 8-8 vs 10-10. Then last question, we live in Columbus Ohio. Trevor has been seeing the docs at the James because he is incarcerated. The doctors are going to petition the state to release him so he can get the care he needs. They told me they aren't equipped to treat him and he should go to NIH. I live closer to Cleveland Clinic and was wondering if it fell to the same level of quality of care as the NIH or if there is different reasons to choose one over the other. .Im trying to do my own research on all these questions but you guys seem to be the best source. Thanks
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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Old Sun Jan 20, 2013, 03:45 PM
Neil Cuadra Neil Cuadra is offline
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Jody,

A donor should be as good an HLA match as possible. They test a certain number of genetic markers and want to match as many as possible. My wife had a 6-of-6 match, which was considered "perfect" at the time, but that was before they routinely tested 8 or 10 markers. When they test 6 markers it's 3 pairs named A, B, and DR. When it's 8 they add the C pair. When it's 10 they'll typically added the DQ pair.

If you have multiple 6-of-6 or 8-of-8 matches, they'll want to know if they match as 10-of-10. If they do, they have to find out which of those potential donors are actually available, willing to donate, and still medically eligible. If you still have a choice of equally matched donors, other factors would help determine the choice, including age, the number of children a female donor has had, CMV (cytomegalovirus) status, and other details. Perhaps a racial match would be a factor too, all other things being equal, since a match in ethnic background would make it more likely that HLA markers of lesser importance would match as well as the markers they tested.

Perhaps it's a silly analogy, but I find it helpful to compare patient-donor matching to an online dating site. You ask single people 6 questions and match them up for dates with people who give matching answers. If you ask them 8 questions you've got a better chance of making the best matches. If you ask them 10 questions that's even better. You can improve things further by making the questions more detailed, the way they use DNA analysis to check antigen matches more closely.

Finding 509 matches at 8-8 is very good news. It means that Trevor's HLA types aren't unusual. Some people have rare markers or rare combinations and find no matches at all. Any one of those 509 matches is a potential donor, and the hospital will coordinate with the managers of the bone marrow registry to narrow the selection. Searches in the U.S. national registry can be augmented by searches of international registries.

The NIH is a government funded research facility. They have top-notch staff but accept patients only if there's a study the patient can join. All medical care is provided without charge since it's taxpayer funded. The Cleveland Clinic is also top-notch and up on the latest research, but isn't free. If Trevor's care would be paid for by the government due to his incarceration then that may not be a concern; otherwise you'll need to check on insurance coverage for treatment at the Cleveland Clinic. You should also check whether he'll really have a choice of treatment center or whether his options will be limited.

You'll need to know if NIH has a study Trevor would qualify for. You can contact them and ask about getting an evaluation, which is also free.

You also need to consider whether you'd expect to be with Trevor in person for most of his treatment. That would be a lot easier and cheaper for you near home than if you had to move to Maryland for the duration of his treatment. The NIH can help find nearby housing for family members, but food and housing costs can still drain your budget.
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Old Sun Jan 20, 2013, 04:07 PM
JodyW JodyW is offline
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Thanks Neil. All very helpful info as usual. Appreciate your reply.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #6  
Old Mon Feb 4, 2013, 01:50 AM
NLJabbari NLJabbari is offline
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Hi Jody, Sorry to hear about your son's relapse and circumstances. I Hope all is going well with Trevor. Praying this second round of ATG will put him in remission. Please let us know how things are going for him and how you're doing.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #7  
Old Mon Feb 11, 2013, 09:29 PM
LoveRapheal1 LoveRapheal1 is offline
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A 10/10 match is the best. The higher the match is the less risk for graft host rejection. And the sooner they find the match the better because too many transfusions can create a higher risk of graft host rejection. There may be other foundations around the world or registries that you can research online if that is possible. Good luck to your son.

Quote:
Originally Posted by JodyW View Post
Thanks Neil. The doctors at the James Cancer hospital said they were going to begin a search, but I have received differing opinions from Hematologists regarding who Trevor can get a donation from and was hoping someone could clarify. I have been told that since Trevor is bi-racial he should only have a bi-racial donor. Others have said it doesn't matter as long as its a 10/10 match. Also , wondering if you could clarify the difference between a 10-10 and an 8-8. I entered Trevor's HLA info in to the Be a Match tool and it shows he has 509 potential donors at 8-8. Is 509 on that tool a good number or not and why 8-8 vs 10-10. Then last question, we live in Columbus Ohio. Trevor has been seeing the docs at the James because he is incarcerated. The doctors are going to petition the state to release him so he can get the care he needs. They told me they aren't equipped to treat him and he should go to NIH. I live closer to Cleveland Clinic and was wondering if it fell to the same level of quality of care as the NIH or if there is different reasons to choose one over the other. .Im trying to do my own research on all these questions but you guys seem to be the best source. Thanks
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