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 | Sep 2 12:15pm

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?

Jump to this post

@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.

anitasharma | @anitasharma | Sep 14 10:41am

Hello Fighters ....
Hey @loribmt
I am here today to share my Husband's AML health update .
As you all know his BMT allogenic transplant has been done last year April 2025 . After 15 months of transplant his Cancer relapsed again making us shattered with the news .It was normal routine checkup and his bloodwork wasn't seems as good So Doctors did the blood smear test and later Biopsy confirmed the same .He is admitted again in the University of Alberta hospital. Considering its a bad luck if someone can please suggest what would be the next best option for him .whether a second Bone marrow transplant or chemo ?
Does second Bone marrow transplant would really work out this time or the chances are very low ?
We are not able to decide what to do next ?
Please help me guiding more
Thank you
Keep fighting

Lori, Volunteer Mentor | @loribmt | Sep 14 4:23pm

In reply to @anitasharma "Hello Fighters .... Hey @loribmt I am here today to share my Husband's AML health update..." + (show)

@anitasharma Aw, Anita, this is such disappointing news about your husband relapsing. I know you’re all feeling gut-punched right about now, even his BMT team. I’m right there with you because we shared so much of his journey together.

But please don’t despair! This is just a twist or bump in the road. Relapses do happen. With some forms of leukemia, certain mutations are able to evade chemo and the transplant. They can actually go dormant but then resurface later, generally within 6 to 18 months post transplant. Some residual disease is too minuscule to easily detect.

Because your husband has frequent blood work, the cells were caught early in his lab results. His doctors will have a back-up game plan. It might involve followup chemo, targeted therapies, possibly a DLI (infusion of cells from his donor)(your son) and potentially a second transplant. It isn’t uncommon for some transplants to be repeated with a have positive outcome!

You don’t have to make any decisions immediately…and husband is also in much better health entering into any treatment this time. So, his doctors will reassess his case and determine the next route to take. Then they’ll discuss it with you and your husband so that you’re all comfortable with the next steps.
Hang tight and as you say, keep fighting. This is just a bump in the road, not a cliff.
Please keep me updated, ok?

anitasharma | @anitasharma | Sep 14 5:00pm

In reply to @loribmt "@anitasharma Aw, Anita, this is such disappointing news about your husband relapsing. I know you’re all..." + (show)

@loribmt
I would just like to tell you the Doctors are uncertain about the next treatment at this stage . They said the second transplant usually have more risk and lower chances just about 12-15% .
They cant go with DLI (infusion of cells from his donor)(my son) . Cell therapy started don't know what's next . They might start chemo which is pills and injection every week so that he can go home and enjoy some quality time but again they are not sure till when it worked out . And once it stopped they don't have any other treatment after that .....
I cant explain my feeling how much we are in pain right now.
There is no way out ...
We are just exhausted now ,not seeing any clear path to choose .
please suggest and help me something about other clinical trail or else
I will be highly grateful to you .
Thanks

Lori, Volunteer Mentor | @loribmt | Sep 15 8:28am

In reply to @anitasharma "@loribmt I would just like to tell you the Doctors are uncertain about the next treatment..." + (show)

@anitasharma
I’m just heartbroken for your family with this latest update. I know it feels hopeless right now but it’s not time to throw in the towel.

While your husband is already with the University hospital in Alberta, I would still suggest a 2nd opinion. I’m not sure if video appts are offered if not living within the US, but it might be worth trying. If not, there may be some travel to the US involved. But it may be worth a visit to a clinic with a very deep bench of specialists.

The closest to you would be the Fred Hutchinson Cancer Center in Seattle, Washington. The Hutch center was at the forefront of stem cell transplantation and is a highly rated cancer center.
https://www.fredhutch.org/en.html
~This is the link to their appointment request page:
https://www.fredhutch.org/en/patient-care/request-appointment.html
~~~~~~~~~~~~~~

Mayo Clinic in Rochester Minnesota is where I am a patient. Their BMT and hematology departments are outstanding and very responsive.
http://mayocl.in/1mtmR63
I did find a few clinical trials listed for Rochester regarding treatments for ALL. Not sure they’re relevant but here’s the list.
https://www.mayo.edu/research/clinical-trials/search-results?
Clinical trials listed on the Cancer.gov site, for ALL (acute lymphoblastic leukemia)
Some of these include relapsing ALL
https://www.cancer.gov/research/participate/clinical-trials/disease/acute-lymphoblastic-leukemia-all/treatment
This is a disappointing setback for sure, but hope is not lost. Please check to see if a 2nd opinion is possible. I know my local oncology team was excellent but they also worked closely with the doctors at Mayo. Larger centers of excellence often have access to resources and information that might not be on the radar of smaller clinics.

Holding you close in my thoughts and hoping for days filled with strength and healing.

katgob | @katgob | Sep 15 3:29pm

In reply to @anitasharma "Hello Fighters .... Hey @loribmt I am here today to share my Husband's AML health update..." + (show)

@anitasharma

That is rough. Everything can seem so right, until it is not. I am so grateful Lori posted options. 2nd opinion please. From my research hospital at COH you are reminding me that an answer like that is not the only choice. Different doctors, and hospitals, different choices. Please keep us posted. I know now i will keep asking as there are more and more possibilities in medicine now.

hanya | @hanya | Sep 15 5:36pm

In reply to @tlsorbet "@loribmt Thank you so much Lori. She told her own pathologist it was fine to have..." + (show)

@tlsorbet HELLO FRIEND
I WANT TO EXPRESS MY SUPPORT AND ENCOURAGE YOU TO GET SECOND OPINIONS!
PERSONALLY I GET VERY UPSET WHEN A MD WILLNOT HELP THEIR PATIENT TO SEEK MORE ADVANCED CARE ! KEEP SEARCHING FOR BETTER CARE !TRY NOT TO LET THE SELFISH INSECURE DOCTOR STOP YOU !!ALL OF US HERE , ARE PULLING FOR YOU AND STAND WITH YOU ! STAY STRONG ,DO NOT GET DISCOURAGED 🙏HUGS

davi0937 | @davi0937 | Sep 16 8:35am

In reply to @hanya "@tlsorbet HELLO FRIEND I WANT TO EXPRESS MY SUPPORT AND ENCOURAGE YOU TO GET SECOND OPINIONS!..." + (show)

@tlsorbet and others

Living with cancer and being your own advocate along with doing the research to understand the disease and best course for yourself is difficult. I had a video visit with my transplant MD this week where he would not answer my questions specifically-glossed over my concerns and research and ultimately was very focused on his organization’s protocol. At the end of our visit I broke down in tears and he said I was reacting emotionally. LOL - well it’s my life I’m fighting for! Best to you all on your journey.

tlsorbet | @tlsorbet | Sep 16 7:48pm

In reply to @hanya "@tlsorbet HELLO FRIEND I WANT TO EXPRESS MY SUPPORT AND ENCOURAGE YOU TO GET SECOND OPINIONS!..." + (show)

@hanya I really needed this! My husband health insurance just dropped me this past Friday. I have an appointment with the Mayo Clinic in October. I still have Medicare and Moda G Plan Insurance for retired people. The doctor here did not give me enough cycles of Chemotherapy to insure the mutation were irradiated before giving me stem cell transplant and now they are reappearing.

tlsorbet | @tlsorbet | Sep 16 8:15pm

In reply to @davi0937 "@tlsorbet and others Living with cancer and being your own advocate along with doing the research..." + (show)

@davi0937 they have to make sure your cancer is irradicated from your bone marrow before giving you a stem cell transplant. So bone marrow biopsy with no molecular mutation visible is most important. Not sure what type of mutation you have and the percentages. Not to sure what concerns you have but the National Marrow Donor Program has information regarding transplant. Don’t let the physicians not answer your question or glaze over them. Request another appointment. You got us supporting. The Leukemia and Lymphoma Society also will answer question has booklets and you can actually talk to someone.

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