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Mentor

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

leilab1 | @leilab1 | Jan 21 10:30am
In reply to @loribmt "Hi Anita and Alex, If it’s any comfort at all I react to most all the..." + (show)
@loribmt

Hi Anita and Alex, If it’s any comfort at all I react to most all the vaccines now, even 4+ years after transplant. I seem to develop some type of inflammatory response which can last for 2-4 weeks and then it settles down. My response usually starts about a week or two after the vaccination with neurological symptoms. This includes Covid vaccines, influenza and recently, after waiting 4 years to finally receive it, my MMR vaccination. This one was the most pronounced.
Many people have similar reactions to vaccinations and right now, being so early after his SCT Alex’s immune system isn’t predictable so he can have changes in his blood work and symptoms from many different factors.

VEXAS is pretty serious autoimmune condition and generally involves a mutated gene. That would be a far stretch at this point so soon after his transplant.
So let his team work through this with him. Has he made any changes to his medications lately, such as reduction in his tacrolimus?
What are his symptoms?

Jump to this post

Tacro is titrated to 0.5 now but prednisone has been increased slightly.

REPLY
leilab1 | @leilab1 | Jan 21 10:21am
In reply to @marylou329 "I will be having a BMT in a few months for MDS. Is there any advice..." + (show)
@marylou329

I will be having a BMT in a few months for MDS. Is there any advice you can provide me? It will be done at Dana Farber and My husband and I will have to relocate for a few months. I am having a lower intensity BMT and it's done outpatient, but I have to stay close by to the hospital. I'm in the process of conditioning my body as well as my mind for this long process and know that God is on my side and will Take care of Me.

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Dana Farber is a top notch facility and I'm sure they will take very good care of you.
Good luck in your journey and wishing you well.

REPLY
leilab1 | @leilab1 | Jan 21 10:19am
In reply to @loribmt "Hi Anita and Alex, If it’s any comfort at all I react to most all the..." + (show)
@loribmt

Hi Anita and Alex, If it’s any comfort at all I react to most all the vaccines now, even 4+ years after transplant. I seem to develop some type of inflammatory response which can last for 2-4 weeks and then it settles down. My response usually starts about a week or two after the vaccination with neurological symptoms. This includes Covid vaccines, influenza and recently, after waiting 4 years to finally receive it, my MMR vaccination. This one was the most pronounced.
Many people have similar reactions to vaccinations and right now, being so early after his SCT Alex’s immune system isn’t predictable so he can have changes in his blood work and symptoms from many different factors.

VEXAS is pretty serious autoimmune condition and generally involves a mutated gene. That would be a far stretch at this point so soon after his transplant.
So let his team work through this with him. Has he made any changes to his medications lately, such as reduction in his tacrolimus?
What are his symptoms?

Jump to this post

Hi Lori,
Alex's symptoms involved synovial effusion in his right hip and also edema in both ankles. He now has a clicking noise in the affected hip joint and experience is difficulty walking.
He is being referred to a rheumatologist. We'll see.....
It's a relief to me to know that this response is to be expected in some cases but getting to the root cause would go a long way in explaining symptoms.
I really appreciate your ongoing support!!!!! Hugs 🤗

REPLY
marylou329 | @marylou329 | Jan 21 10:10am

I will be having a BMT in a few months for MDS. Is there any advice you can provide me? It will be done at Dana Farber and My husband and I will have to relocate for a few months. I am having a lower intensity BMT and it's done outpatient, but I have to stay close by to the hospital. I'm in the process of conditioning my body as well as my mind for this long process and know that God is on my side and will Take care of Me.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 21 9:53am
In reply to @leilab1 "Hi Lori, This new year has presented Alex(us) with new mysteries without answers. Initially, he was..." + (show)
@leilab1

Hi Lori,
This new year has presented Alex(us) with new mysteries without answers. Initially, he was doing alright with BMT recovery. Then he received a Flu shot and "things" started going downhill. I'm now suspecting that he has VEXAS. I've just recently discovered this condition and am waiting to hear back from Alex's BMT-Team. Any thoughts?
Thanks,
Anita & Alex

Jump to this post

Hi Anita and Alex, If it’s any comfort at all I react to most all the vaccines now, even 4+ years after transplant. I seem to develop some type of inflammatory response which can last for 2-4 weeks and then it settles down. My response usually starts about a week or two after the vaccination with neurological symptoms. This includes Covid vaccines, influenza and recently, after waiting 4 years to finally receive it, my MMR vaccination. This one was the most pronounced.
Many people have similar reactions to vaccinations and right now, being so early after his SCT Alex’s immune system isn’t predictable so he can have changes in his blood work and symptoms from many different factors.

VEXAS is pretty serious autoimmune condition and generally involves a mutated gene. That would be a far stretch at this point so soon after his transplant.
So let his team work through this with him. Has he made any changes to his medications lately, such as reduction in his tacrolimus?
What are his symptoms?

REPLY
2 replies
leilab1 | @leilab1 | Jan 21 8:16am
In reply to @loribmt "Anita, it’s ok to be in the dark about some of the medical issues that may..." + (show)
@loribmt

Anita, it’s ok to be in the dark about some of the medical issues that may pop up with Alex…that’s why he has doctors. This occurrence with his hip may have nothing to do with his transplant at all. When we go through a life altering event such as a stem cell transplant, it feels natural to correlate every unusual thing that pops with that event. But sometimes things just happen and who knows, they may have taken place anyway. Regardless, we deal with these little events as they come.

Alex is well past the initial critical period of 100 days. So now issues, if any, that may pop up related to his transplant will generally develop slowly without escalating quickly. That was more of a concern in the early days.

I hope everything goes smoothly and no surgery is necessary. It’s not a setback, just a little snag. Please let me know what you found out. ☺️

Jump to this post

Hi Lori,
This new year has presented Alex(us) with new mysteries without answers. Initially, he was doing alright with BMT recovery. Then he received a Flu shot and "things" started going downhill. I'm now suspecting that he has VEXAS. I've just recently discovered this condition and am waiting to hear back from Alex's BMT-Team. Any thoughts?
Thanks,
Anita & Alex

REPLY
1 reply
jrwilli1 | @jrwilli1 | Jan 20 7:54pm
In reply to @majid12 "I'm happy for you , I hope to celebrate like you someday" + (show)
@majid12

I'm happy for you , I hope to celebrate like you someday

Jump to this post

One day at a time.

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 20 1:06pm
In reply to @majid12 "I need a grow were I can share with the hospital were my wife is receiving..." + (show)
@majid12

I need a grow were I can share with the hospital were my wife is receiving her treatment, we have been looking for morrow spinal cord but we haven't seen for the past 2 years now

Jump to this post

Hi @majid12 It’s been quite a while but I remember you and your wife. She had AML and you were concerned about her treatment. We left off with discussion of finding stem cell donors for her.
I’m not certain what you mean about looking for marrow spinal cord. If you mean stem cells for a bone marrow transplant, there are international stem cell donor registries that your wife’s hospital should be using to find a match for her. Is your wife in remission from Acute Myeloid Leukemia. Is she still waiting to find a stem cell donor?

REPLY
majid12 | @majid12 | Jan 20 1:05pm
In reply to @jrwilli1 "Boy your husband’s story sounds so much like my husband’s. Here you are just beginning and..." + (show)
@jrwilli1

Boy your husband’s story sounds so much like my husband’s. Here you are just beginning and my husband did the same chemo and it also lowered his platelets and he also was in the hospital for fever. But let me tell you now he is just shy of a year after transplant. No it has been a real roller coaster but he is doing very well as a whole and we will definitely celebrate this year mark. Yes this second chance at life is all worth it. And I can’t say enough about the responses from people that will get you through it all. Prayers and hugs.

Jump to this post

I'm happy for you , I hope to celebrate like you someday

REPLY
1 reply
jrwilli1 | @jrwilli1 | Jan 20 12:51pm

Boy your husband’s story sounds so much like my husband’s. Here you are just beginning and my husband did the same chemo and it also lowered his platelets and he also was in the hospital for fever. But let me tell you now he is just shy of a year after transplant. No it has been a real roller coaster but he is doing very well as a whole and we will definitely celebrate this year mark. Yes this second chance at life is all worth it. And I can’t say enough about the responses from people that will get you through it all. Prayers and hugs.

REPLY
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