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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Sun Apr 8, 2018, 02:58 PM
DelleC DelleC is offline
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Do matched siblings often decide not to donate?

My husband received a stem cell transplant for MDS a few months ago. His doctor wants to do a donor lymphocyte infusion. The doctor is concerned that relapse risk may be high due to low percentage of donor T cells in his blood and marrow (low T cell chimerism). His sister, who donated the initial stem cells, says she does not want to go through apheresis again.

I feel very grateful for the donation she made, but her new decision has left me numb and hurt. I know it could greatly shorten my husbands life if relapse occurs. We have young children. We are at a critical point in the transplant process.

Does it happen often that matched siblings donors decide not to donate stem cells through apheresis? How do people cope?
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  #2  
Old Sun Apr 8, 2018, 05:28 PM
Meri T. Meri T. is offline
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apheresis again

Delle C,
I am very glad that your husband found a sibling match, his sister willingly donated her stem cells, and that the transplant was initially successful.

I videotaped my brother going through the apheresis process: he was stretched out for 6 hours ! Mind you, he is a healthy strong and a loving brother, but it still took a toll on him. So for your husband's sister's hesitation in going through another apheresis should relapse occur, I understand.

Before going through the process, the transplant team, doctors and coordinator talked to my brother alone through an interpreter to make sure he was on board, donating of his free will, and explaining to him of all the risks. So, my advice is to let the transplant team talk to your sister.

My hematologist says that if I relapse they will not do a donor lymphocyte infusion, because the initial sibling cells didnot "work". They would do a second transplant, this time cord blood.

My prayers for your husband, you and your family. I hope everything will work out well.
Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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  #3  
Old Sun Apr 8, 2018, 11:17 PM
Heather8773 Heather8773 is offline
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My husbands sister choose not to be tested to see if she was a match bc she said she doesnít like needles. It hurt my feelings.

I have heard of people going with a new donor if relapse happens. Is that an option for yíall?
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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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  #4  
Old Mon Apr 9, 2018, 01:06 AM
Meri T. Meri T. is offline
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Heather, my 3 siblings were tested with a swab kit (saliva), no needles necessary.
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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  #5  
Old Mon Apr 9, 2018, 03:53 AM
lisa3112 lisa3112 is offline
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Wow that's a bit strange. I know if my sisters could have donated, they would have done it as many times necessary. They were both upset they weren't matches.
Maybe your sister in law needs a meeting with the doctors so she understands the risks to her brother. Good luck.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #6  
Old Mon Apr 9, 2018, 11:16 PM
Heather8773 Heather8773 is offline
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Meri T I think she was afraid she would be a match.. she came to the hospital they pulled her into a room to talk and she opted out.
It all worked out they found a 10/10 match in Germany
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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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  #7  
Old Tue Apr 10, 2018, 02:51 AM
Naive Naive is offline
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When my doctor first mentioned the possible need of a transplant in the future, I asked my brother if heíd be tested for compatibility if necessary. He said no, straight way without even hesitating. He is phobic about hospitals, illness, death, dying and ageing. There was no way heíd even consider it. It is what it is. Itís his right to refuse...I canít say that I wasnít disappointed and hurt but I have accepted his decision and our relationship is still good.
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  #8  
Old Thu Apr 12, 2018, 04:03 AM
lisa3112 lisa3112 is offline
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Its not like its a kidney. I don't understand the hesitation, pretty selfish. So great he found a match in Germany. Where its compulsory to be tested. Go Germany!
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #9  
Old Thu Apr 12, 2018, 07:05 PM
JoMac53 JoMac53 is offline
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Lisa, is it also then compulsary to donate stem cells or marrow? Otherwise, why be forced to be tested?
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Joanne, 64F; Dx Pancytopenia May '17; Primary MDS RAEB-1 Aug '17. Currenly weekly CBC, Granix shot if ANC below 1.0
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  #10  
Old Thu Apr 12, 2018, 08:26 PM
lisa3112 lisa3112 is offline
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Jo, I don't know sorry. But by the number of german donors maybe it is compulsory to donate! Just guessing though. Might google it 😊
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #11  
Old Thu Apr 12, 2018, 08:35 PM
lisa3112 lisa3112 is offline
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From what I've read it is NOT compulsory for a german citizen to donate 😊
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #12  
Old Thu Apr 12, 2018, 11:56 PM
Heather8773 Heather8773 is offline
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DelleC any change of heart from your sister in law? Any plan B from the Drs?

Yes Lisa so grateful to Germany and their commitment to matching donors!! Iím trying to learn German now as a show of gratitude. So far we havenít been able to connect w his Donor so we are going to see if the info is still correct.
Honestly Lisa as much as I try to repress it I feel the same way. I would and would have in a heart beat. Even before we were personally affected.
But itís funny the things people end up having in common w their donors after transplant like taste and such... his sister makes questionable life and health choices it was probably a blessing lol
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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 Fri Apr 13, 2018, 07:15 AM
lisa3112 lisa3112 is offline
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Yeah heather that's right. It may not have worked out with his sister and fate had a better donor in mind! I wish I knew who my donor was! All I know is he is from Melbourne. Let us know how he gets on!
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #14  
Old Fri Apr 13, 2018, 07:23 AM
lisa3112 lisa3112 is offline
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Della c, fingers and toes and EVERYTHING crossed your hubby doesn't require DLI. I thinks its in the back of every transplant patients mind. I guess we can't control it, so we should try and move forward. But its hard. Good luck!
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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