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.

anitasharma | @anitasharma | Sep 22 2:36pm

In reply to @janetlen "@anitasharma I am sorry to hear this outcome. Praying for your husband, you, and your family...." + (show)

@janetlen
Praying to God ,It will surely help you out.
Could you also share after how many years of BMT it relapsed ?

janetlen | @janetlen | Sep 22 5:58pm

Chimerism changed at the 6 and 9 months check. Sometime during that period would be my guess.

katgob | @katgob | Sep 22 10:26pm

In reply to @janetlen "@anitasharma I am sorry to hear this outcome. Praying for your husband, you, and your family...." + (show)

@janetlen Fingers crossed if it is a darn a false count. Keep us updated.

katgob | @katgob | Sep 22 10:33pm

In reply to @janetlen "Chimerism changed at the 6 and 9 months check. Sometime during that period would be my..." + (show)

@janetlen
I am 2 years 4 mo. out. The chimerism has not been checked in a long time. Also, my hematology oncologist is not concerned that my donor's blood was 0 and I am A+ still. He shrugged when i brought this up. Not concerned. You remind me we must ask till we get the answer to our question. Some days i completely forget i had a transplant.

Lori, Volunteer Mentor | @loribmt | Sep 23 8:58am

In reply to @jrhino860 "@edb1123 How old were you when you had theBMY" + (show)

Hi @jrhino860 While you’re waiting for a reply from @edb1123 as to her age at time of her bone marrow transplant, I just wanted to pop into the conversation to welcome you to Connect!
Is a bone marrow transplant on the radar for you or a family member?

davi0937 | @davi0937 | Sep 26 6:11pm

https://substack.com/app-link/post

billy61 | @billy61 | 4 days ago

In reply to @loribmt "So, I kicked off this discussion group with my story. Now I'd like to hear from..." + (show)

@loribmt Hello! Not sure where to start or what to expect… but just diagnosed that my T-Cell lymphoma has return after 4.5 years. Doctor believes we can beat it quickly and get back to remission. However, recommending bone marrow transport immediately after chemo successfully ends. Not sure what that treatment looks like. Must live at a facility for 4-6 months. Hopefully, kill the chance for 3rd battle.
I have so many questions….
What is this transplant like? Why so long? What does it do to the body? Does it work?
Unfortunately, I do not know anyone that has done this…. So, I feel ignorant…and searching for answers. Not sure where to finds answers…
Thank you

katgob | @katgob | 4 days ago

billy61, you will hear from Lori or another. Did you look up T-cell lymphoma. There are so many blood cancers and so much to read on Mayo.

For me, my fool Medical Oncologist again asked her NP asked me if i wanted to take a test that measures something about taking AIs like Letrozole and if it is worth it to take it still. I did not agree to do it, but they sent it to be done. Now i am supposed to file a grievance with my insurance. Really. They want me to fill out info on this form first before we go to anthem. Really? I sent them a message in the portal. Today I also got a denial from the first test that checked on circulating cancer cells. Anthem firmly denied as this test company is out of network. I may have to pay $4,500.00 for the 1st test.
Another paid hundreds of thousands for my care. This is not my original oncologist who walked me through treatment. I see this dr Friday and tomorrow i call that fool testing company. This MO is younger and newer from the end of her schooling. All the new test are not approved for the most part by insurance companies. I do not have a salary with extra money for these tests. I am grateful 1000 times for Anthem covering my 2 cancers. Blessed.

Lori, Volunteer Mentor | @loribmt | 2 days ago

In reply to @billy61 "@loribmt Hello! Not sure where to start or what to expect… but just diagnosed that my..." + (show)

Welcome to Mayo Clinic Connect @billy61
You came to the perfect group for information about bone marrow transplantation. First, I am sorry to hear about your remission with T-cell lymphoma after a nice 4.5 year remission. I’m sure that hit you like a ton of bricks. I know how I’d feel if I got that news. Your doctor has offered you an option of hitting this hard with chemotherapy to get you back into remission followed by a bone marrow transplant (BMT).

Having had a bone marrow transplant for another blood cancer, 7+ years ago, I can attest to the positive outcome this procedure brought to me and many others. While it does come with risks, it remains, at this time, the only potential cure for your form of cancer.

Each clinic that performs these procedures have similar protocols for the actual transplant itself. But they can vary in the demand for patient time to stay near the clinics. In your case you’ve been told it may take 4-6 months away from home. “Why so long?” The first 100 days following the BMT are considered critical in the recovery period. Patients are generally asked to remain within 30 minutes of the facility in case there are any issues that need immediate attention. Some facilities such as Mayo Clinic, the BMT is done as an outpatient. There is minimal time actually spent IN a hospital setting but you convalesce offsite at your choice of lodging. My husband and I relocated to Rochester, MN for almost 4 months while I went through my treatment.

You may be in your hospital setting a little longer if your treatment for the relapsed T-cell lymphoma is done there instead of locally at your home clinic.

I’m here to help you as well as a large number of us who have had their BMTs for lymphoma or leukemia. There are so many stories shared right here in this discussion that you joined. I also have information on the procedure and what to expect, potential side effects, etc.. You may wish to start at the beginning of the discussion to read through some of the current conversations.
Are you at a larger teaching/research institution?

billy61 | @billy61 | 2 days ago

Good morning Lori,
Thank you for the reply. Very informative. I am going to go on a deep read this weekend. I have doing my research.
I am actually at a VA facility right now for chemo. But will be choosing institution for my BMT eventually. Leaning towards City of Hope in Duarte, Ca

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