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.

dwolden | @dwolden | Jan 19 10:15am

In reply to @callie28 "I am the caregiver for my husband who has MM and we live near Duluth. He..." + (show)

Thank you for your reply. May his remission last.
If you don’t mind my asking, was it an auto it allo transplant?

callie28 | @callie28 | Jan 20 7:20am

In reply to @dwolden "Thank you for your reply. May his remission last. If you don’t mind my asking, was..." + (show)

It was an auto

majid12 | @majid12 | Jan 20 12:35pm

In reply to @colleenyoung "Hi @dwolden, I'd like to add my welcome. How are you doing with getting things organized?..." + (show)

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

majid12 | @majid12 | Jan 20 12:35pm

I'm chatting from Indonesian

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.

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)

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

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)

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?

jrwilli1 | @jrwilli1 | Jan 20 7:54pm

In reply to @majid12 "I'm happy for you , I hope to celebrate like you someday" + (show)

One day at a time.

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)

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

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)

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?

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