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AA Aplastic anemia

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  #1  
Old Wed May 21, 2014, 02:23 PM
marmab marmab is offline
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Transplant question

I have a transplant question. I am headed to BMT after 2 years of hemming and hawing (I think I am the world's MOST reluctant patient). I am fortunate enough to have some excellent matches, though. All 10/10, DQB1, blood type, CMV match, etc.

The most ideal of these matches is a young man. However he is only willing to donate PBSCs, not marrow, which is the preferred stem cell source for my condition. The other ideal matches are women. I don't know yet the particulars on them, and whether any is willing to donate marrow. As my doctor said, there is no literature on whether, all else being equal, young man/PBSC donor is a better or worse choice than woman/marrow donor. The transplant team is looking into this, but it seems open for debate, given the lack of studies on this particular question. GVHD and engraftment issues are particularly worrisome for me because of my age and the fact that I have had well over 100 transfusions -- probably closer to 200 -- and continue to get plts twice/week. The transplant team is doing everything they can to find the absolute best match. They are also planning on using Campath for the preparative regimen, in an effort to reduce the risk of GVHD.

Any insight would be most welcome. Thanks so much.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #2  
Old Wed May 21, 2014, 06:01 PM
Whizbang Whizbang is offline
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I've been told that female donors who have been pregnant or had children develop a specific antibody that is less than ideal for SCT, not sure if this is eliminated if they donate bone marrow... Just what I was told about my sister if she had been a perfect match (which she wasn't)...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #3  
Old Wed May 21, 2014, 07:08 PM
sbk007 sbk007 is offline
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From the literature I read they rarely take marrow. Some studies show there isn't much benefit as opposed to PBSC. I've only heard of one person getting marrow and that was because her sister(the donor) didn't have enough stem cells. If donors had to give marrow there wouldn't' be many donors. Its very hard on the donor. They have to go in many times to get enough. I know someone whose husband gave marrow many years ago and ended up severely disabled and to this day hasn't recovered. Not the norm but for this guy it didn't go well. Ironically the guy that got the marrow is doing fine.
Hope it goes well for you whichever way they go.
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  #4  
Old Wed May 21, 2014, 11:25 PM
marmab marmab is offline
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Thanks for both of your replies. You're right that most transplants use PBSCs. But I was under the impression that for aplastic anemia, marrow is still preferred, as studies show a smaller incidence of chronic GVHD when marrow is used, vs. PBSCs. The reason that you rarely hear of marrow being used may be that there are, in number, relatively few transplants performed for aplastic anemia (a rare disease), compared to transplants for blood cancers, MDS, etc., especially in older adults.

Also, there is no doubt that, for the donor, marrow donation is more onerous than PBSC donation. And yes, with women donors, pregnancies are the issue.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #5  
Old Thu May 22, 2014, 02:37 PM
DonnaM DonnaM is offline
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Marrow vs. Peripheral

On 11-13-13 I had a BMT for Aplastic Anemia. My donor was a 22 year old male from Europe. He donated marrow, which was my transplant team's preference for me. I have a friend also with Aplastic Anemia who is in Houston Methodist right now and should have received earlier today her marrow donation from a young man. Even though the donation process is a difficult experience to go through, it does not disable people for a lengthy period of time. Many donors are willing to sacrifice their time and go through the pain in order to save a life.
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Donna, age 61, hATG for Aplastic Anemia 8/2011, partial response, relapse 2013, BMT 11/2013, excellent blood counts, some GVHD (hair loss, itching)
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  #6  
Old Thu May 22, 2014, 10:02 PM
marmab marmab is offline
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Thanks so much, Donna, for your reply. I am constantly amazed by the altruistic and generous people out there, selflessly willing to donate.

How are you doing post transplant? Do you mind me asking what your preparative regimen was? And your transfusion history prior to transplant?

Thanks again.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #7  
Old Thu May 22, 2014, 11:38 PM
DonnaM DonnaM is offline
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Prep Regimen

I had 2 days of Cytoxan, 2 more days of Cytoxan and Campath, followed by 2 days with treatments of TBI plus Campath. I did not keep up with the number of transfusions I've had, but I certainly haven't had nearly as many as you. I responded to the ATG treatment in 2011 when I was first diagnosed and even though my counts never got up to normal, I was able to stop having transfusions after about 3 months. When I relapsed in 2013 I received some red blood transfusions, but lots of platelets, since I was usually below 10, and had bleeding in the brain and stomach.
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Donna, age 61, hATG for Aplastic Anemia 8/2011, partial response, relapse 2013, BMT 11/2013, excellent blood counts, some GVHD (hair loss, itching)
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  #8  
Old Sat May 24, 2014, 10:36 AM
Relentless Against SAA Relentless Against SAA is offline
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When we met with Dr Young at NIH in March of this year I asked him about using peripheral stem cells vs marrow stem cells for AA. He was quick to answer that marrow is definitely preferred for SAA! He said some transplant doc in other countries are trying to use only marrow for AA transplant. I believe peripheral stem cells are used in the majority of transplants because a majority of transplants are not for SAA due to the rarity of the disease. Leukemia patients benefit form a little of GVHD to prevent the return of Leukemia. Dr Young explained SAA patients DO Not benefit from any GVHD. Dr Young voiced concern when I told him our transplant doc's plan was to use peripheral stem cells to decrease the chance of rejection and was not planning on asking for marrow stem cells. I completely understand your question of using a male's peripheral stem cells vs marrow from a female but I did not ask him that question.
I wish you the best. Please let us know what you and your transplant team decides.

Last edited by Relentless Against SAA : Sat May 24, 2014 at 10:51 AM.
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  #9  
Old Sat May 24, 2014, 10:19 PM
marmab marmab is offline
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Thanks for the replies, everyone. It seems that marrow is the preferred source.

I realize that many factors affect the search for a donor (including time and money), but at what point does the transplant coordinator decide that the best match has been found, and to search no further (especially if there are many potential donors)?
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #10  
Old Wed Jun 4, 2014, 05:13 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by marmab View Post
I realize that many factors affect the search for a donor (including time and money), but at what point does the transplant coordinator decide that the best match has been found, and to search no further (especially if there are many potential donors)?
The cutoff point may be an institutional policy that varies from one treatment center to another. It may also depend on your insurance company's coverage. Doctors are probably aware of how it works but may not make the decision.

You could ask who in the treatment center can provide details, get the facts first-hand, and even consider appealing an insurance company decision if they don't cover additional searches to find a matching bone marrow donor.
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  #11  
Old Thu Jun 5, 2014, 01:25 AM
Heather8773 Heather8773 is offline
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Donna!! Happy to read you here! How is she?!
My husband was that he same hospital oct 10 13 transplant young male from europ marrow...
We were told w SAA GVHD is not something they need to help cure the disease it's self and they prefer to limit the possibility as much as possible w SAA.. But they said w some DX they need a little GVHD to fight the old cells.,
But do you have another 10/10 donor? It's a scary pros and cons list I know
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #12  
Old Thu Jun 5, 2014, 01:25 AM
Heather8773 Heather8773 is offline
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At the *** spell chk!!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #13  
Old Thu Jun 5, 2014, 09:52 AM
DonnaM DonnaM is offline
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Going Strong at Almost +7 Months

Heather! How are you and Ronald? All my counts are normal. I feel good and have lots of energy. The only GVHD issues I have are some itchy bumps on my scalp and face and some dry eyes. But avoiding sun exposure this summer is going to be a hassle. Our friend had her transplant 5-22-14. She has had minimal problems, finally developed some mucositis this week, feels good enough to take long walks in the halls, and is showing signs of engrafting already. Methodist has such good results with us older AA patients.
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Donna, age 61, hATG for Aplastic Anemia 8/2011, partial response, relapse 2013, BMT 11/2013, excellent blood counts, some GVHD (hair loss, itching)

Last edited by DonnaM : Thu Jun 5, 2014 at 10:02 AM. Reason: More Info
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