Stem Cell Transplant for my brother

Posted by aam9422 @aam9422, Jun 7 10:09pm

I am a 54 year old man whose brother has myelodysplastic syndrome. I will like to be his stem cell donor, but I had hepatitis A when I was six years old. Could I still be a donor?

Hi @aam9422 Welcome to Mayo Clinic Connect. Those of us in the Connect forum aren’t medical professionals so we can’t diagnose or offer treatments. But we can use our life experiences and valuable insights to help each other.

I’m sorry to hear about your brother’s diagnosis of MDS. How long ago was he diagnosed? Often it’s a disease that takes time to progress and as it does, blood transfusions are needed frequently. However, that’s not sustainable. If a Stem cell transplant has been suggested he’s at the point where it is the only option that offers a potential for a long term cure. You’re a wonderful brother for offering to be his donor.

For his encouragement, I’m 21 days away from my 2nd ‘re-birth day’ after having a stem cell transplant and I’m very familiar with what your brother is going through. I had a different leukemia but it also required a SCT. I would not be here today if I hadn’t had the procedure. I’m healthy and no sign of relapse! On that same note…a friend whom I met in the hospital during my treatment had a SCT 10 days before I did for her MDS. She is also doing fantastic. So there is hope for your brother.

Now, for the nitty gritty. I’m not sure if your past history of hepatitis A would impact your ability to be the donor. If you’ve not had any long term side effects after so many decades it may not have an impact.
However, there are so many other factors involved in determining if you two are a match or not. Being siblings does help but it doesn’t guarantee a good or safe match. The best way to find this out is to have your blood/DNA tested to see if you match his HLA biomarkers.

Has your brother selected a transplant center to have this procedure done? If so, the transplant team will be seeking and procuring a cell donor for your brother. They’ll take samples of his blood to test DNA and a ‘zillion’ other factors. They will ask your brother if he has siblings and at that point you will most likely be asked to have your blood tested. The blood results will show if you’re a match and also determine if your past hepatitis would interfere with being his donor. I hope you are able to give your brother this life saving gift! Your part in this would be similar to donating blood.

I know this doesn’t give a definitive answer to your question about the Hep A, but until you have a blood/DNA test it can’t be determined. Do you have any other questions about your brother’s condition or his upcoming transplant?
Will you please write again to keep in touch on his progress? Wishing him all the best, Lori

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@loribmt

Hi @aam9422 Welcome to Mayo Clinic Connect. Those of us in the Connect forum aren’t medical professionals so we can’t diagnose or offer treatments. But we can use our life experiences and valuable insights to help each other.

I’m sorry to hear about your brother’s diagnosis of MDS. How long ago was he diagnosed? Often it’s a disease that takes time to progress and as it does, blood transfusions are needed frequently. However, that’s not sustainable. If a Stem cell transplant has been suggested he’s at the point where it is the only option that offers a potential for a long term cure. You’re a wonderful brother for offering to be his donor.

For his encouragement, I’m 21 days away from my 2nd ‘re-birth day’ after having a stem cell transplant and I’m very familiar with what your brother is going through. I had a different leukemia but it also required a SCT. I would not be here today if I hadn’t had the procedure. I’m healthy and no sign of relapse! On that same note…a friend whom I met in the hospital during my treatment had a SCT 10 days before I did for her MDS. She is also doing fantastic. So there is hope for your brother.

Now, for the nitty gritty. I’m not sure if your past history of hepatitis A would impact your ability to be the donor. If you’ve not had any long term side effects after so many decades it may not have an impact.
However, there are so many other factors involved in determining if you two are a match or not. Being siblings does help but it doesn’t guarantee a good or safe match. The best way to find this out is to have your blood/DNA tested to see if you match his HLA biomarkers.

Has your brother selected a transplant center to have this procedure done? If so, the transplant team will be seeking and procuring a cell donor for your brother. They’ll take samples of his blood to test DNA and a ‘zillion’ other factors. They will ask your brother if he has siblings and at that point you will most likely be asked to have your blood tested. The blood results will show if you’re a match and also determine if your past hepatitis would interfere with being his donor. I hope you are able to give your brother this life saving gift! Your part in this would be similar to donating blood.

I know this doesn’t give a definitive answer to your question about the Hep A, but until you have a blood/DNA test it can’t be determined. Do you have any other questions about your brother’s condition or his upcoming transplant?
Will you please write again to keep in touch on his progress? Wishing him all the best, Lori

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Hello Lori,
My brother was diagnosed in early January of this year (2021). He received a stem cell transplant from his son in late January, but at this moment his body is rejecting the transplant. That is why he needs a new donor. He is already at a transplant center. We are waiting for my tests, which I will have later this week. He is currently at level 4 of MDS.
Thank you for your comment.

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@aam9422 My sincerest empathy to your brother for having gone through the SCT process and having it fail. Unfortunately it happens and requires another attempt.

In your brother’s case having a child be the donor gives a 50% match of his DNA.
50% of the DNA is your brother’s own DNA, so that’s a perfect match, but the remaining 50% is from his wife and might totally miss the mark. Any time a completely foreign DNA is introduced into a body you can imagine there will be some complications. In your brother’s case it is rejection.

Being a sibling, you could potentially be a closer match to your brother if you have the same parents. But again, there are other factors in determining which donor DNA will have the desired outcome to preventing the disease from returning. The search for a donor may also come from a national/international donor registry. An even more suitable match might be found for him from an absolute stranger. So don’t despair if you are not a match. Determining a donor is an extremely complex undertaking.

The DNA needs to match but not too closely. If it does then it may not have the desired effect of creating an internal war against any re-emerging cancer cells. Too foreign, then it can be rejected or create other serious issues. So the transplant team will be taking extreme caution in procuring cells for your brother. It would be great if you’re that match as it would certainly speed up the process of getting that second SCT underway quickly! Good luck to both of you!!

Your brother must be physically drained and tired. How is he handling all of this emotionally? Is he allowed to have visitors? Having all of this while under Covid protocol is extra taxing on everyone. You’re both in my thoughts as you wait this out…. Hugs, Lori

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@loribmt

@aam9422 My sincerest empathy to your brother for having gone through the SCT process and having it fail. Unfortunately it happens and requires another attempt.

In your brother’s case having a child be the donor gives a 50% match of his DNA.
50% of the DNA is your brother’s own DNA, so that’s a perfect match, but the remaining 50% is from his wife and might totally miss the mark. Any time a completely foreign DNA is introduced into a body you can imagine there will be some complications. In your brother’s case it is rejection.

Being a sibling, you could potentially be a closer match to your brother if you have the same parents. But again, there are other factors in determining which donor DNA will have the desired outcome to preventing the disease from returning. The search for a donor may also come from a national/international donor registry. An even more suitable match might be found for him from an absolute stranger. So don’t despair if you are not a match. Determining a donor is an extremely complex undertaking.

The DNA needs to match but not too closely. If it does then it may not have the desired effect of creating an internal war against any re-emerging cancer cells. Too foreign, then it can be rejected or create other serious issues. So the transplant team will be taking extreme caution in procuring cells for your brother. It would be great if you’re that match as it would certainly speed up the process of getting that second SCT underway quickly! Good luck to both of you!!

Your brother must be physically drained and tired. How is he handling all of this emotionally? Is he allowed to have visitors? Having all of this while under Covid protocol is extra taxing on everyone. You’re both in my thoughts as you wait this out…. Hugs, Lori

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Hello Lori,

Thank you very much for your support. It means a lot to us.

My brother is currently isolated in the hospital, and he is in the good hands of medical professionals.

He is not allowed any visitors other than his wife at the moment because of covid, but we are communicating with him via text message and periodic phone calls.

Your help means a lot to my family and I, and we can keep you updated for sure!

We are also happy to know that you recovered from this condition.

Our very best wishes,
Alberto

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@aam9422

Hello Lori,

Thank you very much for your support. It means a lot to us.

My brother is currently isolated in the hospital, and he is in the good hands of medical professionals.

He is not allowed any visitors other than his wife at the moment because of covid, but we are communicating with him via text message and periodic phone calls.

Your help means a lot to my family and I, and we can keep you updated for sure!

We are also happy to know that you recovered from this condition.

Our very best wishes,
Alberto

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@aam9422 Hi Alberto. Knowing that I’m helping your family means a great deal to me as well. A SCT is not a ‘walk on the beach’ and everyone’s situation is different. I wish that I’d had someone with first hand knowledge ‘holding my hand’ while I was undergoing this journey.

My family along with my cancer and transplant teams were wonderfully encouraging and of course were my cheer leaders. But unless someone has walked the walk they can’t know and appreciate the depth of emotions and physical reactions to the transplant.

For your brother it’s vital to keep a positive outlook, a sense of humor even when he doesn’t feel like it and to listen to his body.
Please know that I’m here as well as other SCT patients in Connect to help your brother and all of you in his support.

I’ll close with this… One particularly disparaging night early in the transplant, a nurse came in to check my vitals. Neither of us said a word while he went about his routine. Right before he left, he bent down and hugged me…and whispered in my ear, “The only thing stronger than fear is hope.” That was the most impactful thing anyone has ever said to me.

With hope…Lori.

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@loribmt

@aam9422 Hi Alberto. Knowing that I’m helping your family means a great deal to me as well. A SCT is not a ‘walk on the beach’ and everyone’s situation is different. I wish that I’d had someone with first hand knowledge ‘holding my hand’ while I was undergoing this journey.

My family along with my cancer and transplant teams were wonderfully encouraging and of course were my cheer leaders. But unless someone has walked the walk they can’t know and appreciate the depth of emotions and physical reactions to the transplant.

For your brother it’s vital to keep a positive outlook, a sense of humor even when he doesn’t feel like it and to listen to his body.
Please know that I’m here as well as other SCT patients in Connect to help your brother and all of you in his support.

I’ll close with this… One particularly disparaging night early in the transplant, a nurse came in to check my vitals. Neither of us said a word while he went about his routine. Right before he left, he bent down and hugged me…and whispered in my ear, “The only thing stronger than fear is hope.” That was the most impactful thing anyone has ever said to me.

With hope…Lori.

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Hi Lori, thank you so much for your advice and encouragement. Indeed, hope is very important in difficult times, and it can be extremely powerful. We are glad to hear that you had your family and medical team supporting you during such difficult times.

We thank you from the bottom of our hearts for your advice and kind words.

Best wishes,

Alberto

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@aam9422

Hi Lori, thank you so much for your advice and encouragement. Indeed, hope is very important in difficult times, and it can be extremely powerful. We are glad to hear that you had your family and medical team supporting you during such difficult times.

We thank you from the bottom of our hearts for your advice and kind words.

Best wishes,

Alberto

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Hi Alberto, I just wanted to check in with you to see how your brother is doing. Is he feeling ok? I’m sure he’s tired and on a lot of medications so I hope he’s tolerating them well.

I know this is a very stressful time for all of you, filled with worry for your brother. But from what you’ve told me he’s in very good hands with his transplant team. Their goal is to give him the best care and return him to his normal, healthy self.

And the other big question is if you’ve had any news on whether or not you’re donor match for him? I know this is your wish to be able to give your brother the gift of life. I hope and pray you’ll be a match for him.

You’re in my thoughts and prayers. Lori.

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Your brother can do this. I had MDS that advanced to leukemia (AML). Since these were treatment treated to my 29 years living with multiple myeloma, I needed my 4th stem cell transplant (2nd allo) to survive. In 2013, my hospital, University Hospital of Cleveland Seidman Cancer, successful performed this one as it had the prior 3. My 4th transplant put leukemia in remission, where both cancers are today. My book gives hope to others, and acknowledges Mayo for its key role in my survival.Profit from the book goes to charity.

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@jimbond48

Your brother can do this. I had MDS that advanced to leukemia (AML). Since these were treatment treated to my 29 years living with multiple myeloma, I needed my 4th stem cell transplant (2nd allo) to survive. In 2013, my hospital, University Hospital of Cleveland Seidman Cancer, successful performed this one as it had the prior 3. My 4th transplant put leukemia in remission, where both cancers are today. My book gives hope to others, and acknowledges Mayo for its key role in my survival.Profit from the book goes to charity.

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Hi Jim, wow 4 stem cell transplants. What role did Mayo Clinic play in your journey?

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@loribmt

Hi Alberto, I just wanted to check in with you to see how your brother is doing. Is he feeling ok? I’m sure he’s tired and on a lot of medications so I hope he’s tolerating them well.

I know this is a very stressful time for all of you, filled with worry for your brother. But from what you’ve told me he’s in very good hands with his transplant team. Their goal is to give him the best care and return him to his normal, healthy self.

And the other big question is if you’ve had any news on whether or not you’re donor match for him? I know this is your wish to be able to give your brother the gift of life. I hope and pray you’ll be a match for him.

You’re in my thoughts and prayers. Lori.

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Hello Lori,

Fortunately, I am a 100 % match. The HLA results were 100 % compatible. In this moment, my brother is struggling a lot with the rejection of his son's cells. But we all have hope, including the medical team, that the second transplant can be done and that I can help my brother to give him a new life opportunity. I'm sorry that I took this long in replying. We have been waiting for an improvement in my brother's health to perform the transplant. Thank you for your support and advice. You are great person Lori.

I will let you know when I have any news.

Thank you,
Alberto

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@aam9422

Hello Lori,

Fortunately, I am a 100 % match. The HLA results were 100 % compatible. In this moment, my brother is struggling a lot with the rejection of his son's cells. But we all have hope, including the medical team, that the second transplant can be done and that I can help my brother to give him a new life opportunity. I'm sorry that I took this long in replying. We have been waiting for an improvement in my brother's health to perform the transplant. Thank you for your support and advice. You are great person Lori.

I will let you know when I have any news.

Thank you,
Alberto

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Hi Alberto, oh, it’s so good to hear from you and wonderful news that your cells are 100% compatible with your brother. That’s a huge obstacle out of the way when the time is ready for his second transplant.
I’m just so sorry he’s not strong enough yet to get started. But this time, because you’re such a strong match for him, the odds improve drastically for a successful transplant!
It sounds like he has such a wonderful transplant team. From experience I know how attached the members of the team become to their patients. They want a successful outcome too and hate to see suffering. Your brother is a fighter and his team is doing all they can to get him healthy and strong enough to handle this next challenge.

Sending prayers and positive thoughts to you, your brother and family. He’s so lucky to have such a strong support system. I know he can feel the love.
Don’t lose faith…stay strong!! I’ll look forward to hearing from you again soon! Lori.

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