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.

tlsorbet | @tlsorbet | 14 hours ago

In reply to @loribmt "@tlsorbet There is a very fine line between having just enough and too much immunosuppression to..." + (show)

@loribmt

@tlsorbet There is a very fine line between having just enough and too much immunosuppression to control GVHD. We do need some graft vs host, or in our case, graft vs leukemic reaction. That is the whole premise behind the bone marrow transplant in the first place. To use the natural cancer fighting cells that come with the newly acquired immune system.

But when we first get the new stem cells from our donor, they are very aggressive and not only want to take out other cancer cells. They also fight against the normal proteins in our body (the host). When that happens unrestricted, the graft will attack our bodies.

Newer protocols in the past several years give another, preemptive GVHD medication at the time of transplant. This is used to help lower the risk of serious GVHD reactions. It isn’t meant to control a GVHD response 100%. We need some of that response. Though it works so well, some people may not even realize GVHD (or GVL graft vs leukemia) is happening behind the scenes. This protocol wasn’t standard 7 years ago when I had my transplant, so it’s been a great advancement for BMT patients.

If there is a mixed chimerism, it isn’t unusual for the transplant doctor to then lower the level of immunosuppression. This allows for the new immune system to become a little more aggressive. This adjustment is often enough to nudge the production of more cells to push out any remaining cancer cells and naturally upping the chimerism.

There is also such a thing as a DLI. Donor Lymphocyte Infusion. White blood cells are collected from your donor and infused into your system again. This treatment has been shown to be helpful in bumping up a chimerism and also in preventing or treating a relapse. (It’s not another transplant. Just a blood transfusion of white blood cells)

As a BMT patient at Mayo Rochester, I highly recommend you have a consult with their transplant department. From conversations I’ve had with my team, they often get patients in from other clinics where followups are sparse or patients are not happy with their post transplant results. I know patients who have been able to get help through tele-visits. Might be worth a try for you. Here is a link to the Mayo patient request page to get you started.
http://mayocl.in/1mtmR63
Is your chimerism still mixed?

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@loribmt Thank you so much Lori. She told her own pathologist it was fine to have mixed Chimerism and kept me on the immunosuppressant. He said the prognosis is poor. And yes of course you should have some GVHD the new cells need to be somewhat aggressive but she just killed it off. My platelets have not gotten above 77 and I cannot fight off any infection. I am currently sitting in Stanford Palo Alto parking lot waiting for 11:00 am appointment. I will wear an N95 mask and hopefully they can give me something for the Covid19. I called Stanford all the time and ask my doctor to refer me and she retaliated. They say I have 100 percent donor cell but last month one of mutation showed back up. That doesn’t happen if the cells are 100 percent donor.

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