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.

@hopefuldaughter

Hi Lori,
I’m so thankful to have found your post and uplifting words. My father was recently diagnosed with Multiple Myeloma and is currently undergoing chemo (VRD treatment) for the next 3 months and planned stem cell transplant for mid November in Rochester. We’ve read every piece of literature provided by Mayo and watched the Mayo BMT video and admittedly felt overwhelmed and crushed. However, I believe it would be very helpful for my dad (-and mom) to actually hear from actual patients/survivors…someone that would be willing to share their experience. They don’t live in MN and will be traveling from states away which I believe adds to the stress of it all. Anyway, I hope to help them get set up on this forum and hopefully they will be given some peace and hope in learning they aren’t alone. Sending love and well wishes to you and ALL on this thread!

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@hopefuldaughter, I want to jump in here because I see that your mom and dad will be going to Mayo Rochester. I was at Mayo Rochester for a liver and kidney transplant. My husband and I spent 11 weeks there. Our home is in Kentucky. We stayed at the Gift of Life Transplant House. I suggest that they look into it. It was perfect for us.

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@rosemarya

@hopefuldaughter, I want to jump in here because I see that your mom and dad will be going to Mayo Rochester. I was at Mayo Rochester for a liver and kidney transplant. My husband and I spent 11 weeks there. Our home is in Kentucky. We stayed at the Gift of Life Transplant House. I suggest that they look into it. It was perfect for us.

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@rosemarya Thank you so much for reaching out to me. The Gift of Life Transplant House was just mentioned to me by an acquaintance as well. What an incredible endorsement on your part, as 11 weeks away from home under any circumstances is a long time. I truly hope that your kidney and liver transplants were a success and that you’re enjoying continued health! I really appreciate you taking the time to share your experience in order to help point my family in the right direction. ❤️

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Today my father learned from the cardiologist that he’ll need to have a stent placed within the next couple of weeks. I’m really hoping this doesn’t keep him from being a SCT candidate in November. His VRD treatment is going well and other than exhaustion, he’s tolerating it well. Has anyone else had cardiac issues(-his may be completely unrelated) and if so, were they still able to undergo the SCT? I’m certain we’ll hear back from Drs regarding his ability to receive the transplant but thought I’d reach out to hear from this community as well. Thanks.

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@hopefuldaughter

Today my father learned from the cardiologist that he’ll need to have a stent placed within the next couple of weeks. I’m really hoping this doesn’t keep him from being a SCT candidate in November. His VRD treatment is going well and other than exhaustion, he’s tolerating it well. Has anyone else had cardiac issues(-his may be completely unrelated) and if so, were they still able to undergo the SCT? I’m certain we’ll hear back from Drs regarding his ability to receive the transplant but thought I’d reach out to hear from this community as well. Thanks.

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Oh gosh, this is a bump in the road you weren’t expecting. Hopefully it doesn’t interfere with his SC transplant. He’s anticipating an auto-transplant using his own cells so that may pose less of a risk because he won’t be dealing with any rejection issues. But I do know some of the pre-transplant tests have to do with the heart’s ability to meet the rigors of the transplant and pre-conditioning, which is a round of chemotherapy. I’m glad to hear he’s doing well with his VRD treatment. Unfortunately, exhaustion is part of that equation.

Let’s see if some other members will have some input of having stents prior to a transplant. I’m sure you and your parents are so anxious and want to get transplant underway! Hopefully you hear back from his doctors soon with news that it will all go along as planned. Keep me posted, ok?

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@hopefuldaughter

Today my father learned from the cardiologist that he’ll need to have a stent placed within the next couple of weeks. I’m really hoping this doesn’t keep him from being a SCT candidate in November. His VRD treatment is going well and other than exhaustion, he’s tolerating it well. Has anyone else had cardiac issues(-his may be completely unrelated) and if so, were they still able to undergo the SCT? I’m certain we’ll hear back from Drs regarding his ability to receive the transplant but thought I’d reach out to hear from this community as well. Thanks.

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I don’t know if this is any help but I was born with a rare defective heart. I also have MCUS with a precancerous condition, which is progressing into a Non Hodgkin’s Lymphoma. After 3 heart attacks triggered by the defect, I received a stent in my left Atrial Chamber. My problem is this after talking to my Oncologist Hematologist, I could be severely impacted on what treatments could be administered to me once the cancer fully develops. She was honest with me and said any treatment she might give me could kill me. What she did say was that any procedure done on the heart is very hard on it. My only opinion is do nothing and let the cancer kill me or use the safest treatment she can use and hope it doesn’t kill me. I guess my strong will to live will make the final decision. I hope all goes well and he survived the procedure. Good luck, @becky1024

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@becky1024

I don’t know if this is any help but I was born with a rare defective heart. I also have MCUS with a precancerous condition, which is progressing into a Non Hodgkin’s Lymphoma. After 3 heart attacks triggered by the defect, I received a stent in my left Atrial Chamber. My problem is this after talking to my Oncologist Hematologist, I could be severely impacted on what treatments could be administered to me once the cancer fully develops. She was honest with me and said any treatment she might give me could kill me. What she did say was that any procedure done on the heart is very hard on it. My only opinion is do nothing and let the cancer kill me or use the safest treatment she can use and hope it doesn’t kill me. I guess my strong will to live will make the final decision. I hope all goes well and he survived the procedure. Good luck, @becky1024

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@becky1024 Thank you for responding. I think a “strong will to live” is often overlooked when assessing one’s outcome, but I firmly believe that strong will is certainly a FORCE to be reckoned with! …and it certainly sounds like it has served you well, as you’re still here fighting. I shall definitely share your well wishes with my Dad and also ask him to channel his WILL to work for him! Thank you. Sending you wishes for comfort and strength in all of the days ahead!❤️

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@capthondo

Hi Lori!!
Funny you ask. Passed all my preliminary tests last week and finished my stem cell collection yesterday! Chemo conditioning begins next Tuesday. So far all is going well.
Thanks for asking. 🙏

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Good morning, @capthondo
Nosy me popping in to see how you’re doing. By my reckoning, your about 1 month post transplant. Are you home or still at the clinic?

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@hopefuldaughter

Today my father learned from the cardiologist that he’ll need to have a stent placed within the next couple of weeks. I’m really hoping this doesn’t keep him from being a SCT candidate in November. His VRD treatment is going well and other than exhaustion, he’s tolerating it well. Has anyone else had cardiac issues(-his may be completely unrelated) and if so, were they still able to undergo the SCT? I’m certain we’ll hear back from Drs regarding his ability to receive the transplant but thought I’d reach out to hear from this community as well. Thanks.

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Good morning, @hopefuldaughter How is your father progressing with his heart issue? Will he be able to follow through with the stem cell transplant?

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@loribmt

Good morning, @capthondo
Nosy me popping in to see how you’re doing. By my reckoning, your about 1 month post transplant. Are you home or still at the clinic?

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Hi Lori!
You have a great memory!
I’m Day +30. I was released from the hospital on day 18. A friend of mine flew to Rochester in his private jet and took me home!!
I’m doing pretty good. Trying to regain my strength and general fatigue are my biggest issues right now. I have a good appetite but don’t eat nearly as big of portions as before.

I did have a rough 5-6 days during nadir period and was readmitted to inpatient. I had bad mouth sores but they started to heal as my blood counts began to increase.

I go back mid-November for my 100 day check up. Thanks for checking on me!❤️🙏

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@capthondo

Hi Lori!
You have a great memory!
I’m Day +30. I was released from the hospital on day 18. A friend of mine flew to Rochester in his private jet and took me home!!
I’m doing pretty good. Trying to regain my strength and general fatigue are my biggest issues right now. I have a good appetite but don’t eat nearly as big of portions as before.

I did have a rough 5-6 days during nadir period and was readmitted to inpatient. I had bad mouth sores but they started to heal as my blood counts began to increase.

I go back mid-November for my 100 day check up. Thanks for checking on me!❤️🙏

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Ohhhh my gosh! There a zillion reasons to smile in this post!
Having a private jet ride home is like the icing on that cake for sure!
You look fantastic and healthy. Don’t force the recovery…it takes time. Fatigue will be your friend for a couple of months. So listen to your body when it says it wants a nap. They’re guilt free at this point. LOL.
But I also understand the frustration when you’re feeling great and just want to get back at living life to the fullest!
Thank you so much for posting these pictures and your positives report after your autologous stem cell transplant. We never know when our stories will help out someone else going down the same path!
Keep me posted on your recovery, will you? ☺️

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