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Mentor

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.

tml | @tml | Jun 10, 2022
In reply to @loribmt "Hi @countrygirlusa! I’m so happy you’re on the other side of transplant and that everything went..." + (show)
@loribmt

Hi @countrygirlusa! I’m so happy you’re on the other side of transplant and that everything went really well! The process for collection of cells was interesting to read about. My transplant involved an unrelated donor so that generous guy had to go through the collection process instead of me. I only saw the end results. 😉

No matter how well our transplant team prepares us for the journey, it really helps to have someone who has experienced it first hand to be able to give that unique perspective.
On that note, I’d like to introduce @tml to you. She’s about to go through the same process, an auto transplant, coming up hopefully in July. I know she’ll be reassured by your positive experience!
Thank you for sharing your story!
Knowing you had to travel and remain in Rochester for 6 weeks, what was one thing you brought along with you that you found most valuable during your stay?

Jump to this post

Well am hopeful. She certainly was prepared. Really hope they can get enough stem cells quickly and interesting that ice chips would help with the mouth issues. Guess fatigue is always an issue. I did vegan all last year but have gone back to protein already. Sounds like what I will need to do. She said released after 3 weeks so if all goes well it might not be 6 weeks? Wish I were coming up on my 100 days. Guess sometime in October if all goes well! Just wish I had dates!

REPLY
1 reply
countrygirlusa | @countrygirlusa | Jun 10, 2022
In reply to @loribmt "Hi @countrygirlusa! I’m so happy you’re on the other side of transplant and that everything went..." + (show)
@loribmt

Hi @countrygirlusa! I’m so happy you’re on the other side of transplant and that everything went really well! The process for collection of cells was interesting to read about. My transplant involved an unrelated donor so that generous guy had to go through the collection process instead of me. I only saw the end results. 😉

No matter how well our transplant team prepares us for the journey, it really helps to have someone who has experienced it first hand to be able to give that unique perspective.
On that note, I’d like to introduce @tml to you. She’s about to go through the same process, an auto transplant, coming up hopefully in July. I know she’ll be reassured by your positive experience!
Thank you for sharing your story!
Knowing you had to travel and remain in Rochester for 6 weeks, what was one thing you brought along with you that you found most valuable during your stay?

Jump to this post

Thanks Lori! I hope my transplant story is helpful to readers. During our stay in Rochester, having comfortable loose fitting clothes is a plus. I also enjoyed my comfortable slip on shoes! One more thing....an extra warm blanket is nice to have!

REPLY
2 replies
alive | @alive | Jun 11, 2022
In reply to @countrygirlusa "Thanks Lori! I hope my transplant story is helpful to readers. During our stay in Rochester,..." + (show)
@countrygirlusa

Thanks Lori! I hope my transplant story is helpful to readers. During our stay in Rochester, having comfortable loose fitting clothes is a plus. I also enjoyed my comfortable slip on shoes! One more thing....an extra warm blanket is nice to have!

Jump to this post

A blanket from home is a must! I brought my down comforter and memory foam pillow for my long hospital stays for chemo and transplant.

REPLY
tml | @tml | Jun 11, 2022
In reply to @countrygirlusa "Thanks Lori! I hope my transplant story is helpful to readers. During our stay in Rochester,..." + (show)
@countrygirlusa

Thanks Lori! I hope my transplant story is helpful to readers. During our stay in Rochester, having comfortable loose fitting clothes is a plus. I also enjoyed my comfortable slip on shoes! One more thing....an extra warm blanket is nice to have!

Jump to this post

It certainly is helpful to hear your story. Am hopeful to get a date soon but also nervous about the whole procedure and especially the challenges from the chemo. Also worry about the lack of immunity afterwards. Because I have myeloma I now have bone damage that I hope has some resolution as well. Just hoping I am in remission and this can move forward. Hope I am as lucky as you and end up with good stem cell recovery in two days rather than four!!!

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 11, 2022
In reply to @tml "It certainly is helpful to hear your story. Am hopeful to get a date soon but..." + (show)
@tml

It certainly is helpful to hear your story. Am hopeful to get a date soon but also nervous about the whole procedure and especially the challenges from the chemo. Also worry about the lack of immunity afterwards. Because I have myeloma I now have bone damage that I hope has some resolution as well. Just hoping I am in remission and this can move forward. Hope I am as lucky as you and end up with good stem cell recovery in two days rather than four!!!

Jump to this post

@tml Everyone is different in their response to treatments and protocols. That's why there usually are multiple things to try. Don't be nervous, trust your medical team. Do what they suggest, and listen to the tips here. Being on treatment for the multiple myeloma, your system is already immunecompromised, so take the steps needed to protect yourself. You got this!
Ginger

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1 reply
capthondo | @capthondo | Jun 12, 2022
In reply to @tml "Well am hopeful. She certainly was prepared. Really hope they can get enough stem cells quickly..." + (show)
@tml

Well am hopeful. She certainly was prepared. Really hope they can get enough stem cells quickly and interesting that ice chips would help with the mouth issues. Guess fatigue is always an issue. I did vegan all last year but have gone back to protein already. Sounds like what I will need to do. She said released after 3 weeks so if all goes well it might not be 6 weeks? Wish I were coming up on my 100 days. Guess sometime in October if all goes well! Just wish I had dates!

Jump to this post

Im undergoing my sixth and final CHOEP treatment for PTCL this week to be followed with a PET scan on July 11. Hopefully I’ll be scheduled for auto sct later in July as well in Rochester. Like most of us, I’ve asked a lot of questions, done my research, and read plenty of personal sct experiences. I’m ready as soon as my doctors are ready for me!!

REPLY
1 reply
tml | @tml | Jun 14, 2022
In reply to @gingerw "@tml Everyone is different in their response to treatments and protocols. That's why there usually are..." + (show)
@gingerw

@tml Everyone is different in their response to treatments and protocols. That's why there usually are multiple things to try. Don't be nervous, trust your medical team. Do what they suggest, and listen to the tips here. Being on treatment for the multiple myeloma, your system is already immunecompromised, so take the steps needed to protect yourself. You got this!
Ginger

Jump to this post

Hope so! Time is going so slowly and no dates yet. Nine more days of Revlimid and finally the myeloma labs. Just worried. Hope you are doing well!!!

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 29, 2022
In reply to @wyom1998 "Paraprotein .9 Kappa 1.73 Lamba .17 Ratio 10.18" + (show)
@wyom1998

Paraprotein .9
Kappa 1.73
Lamba .17
Ratio 10.18

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Good morning, @wyom1998. Thought I’d pop in to see how you’re doing. I know the first SCT didn’t work out as planned and you’re on a new regimen of meds. Is that working to lower your numbers? Do your doctors want a second try with a SCT?

REPLY
1 reply
wyom1998 | @wyom1998 | Jun 29, 2022
In reply to @loribmt "Good morning, @wyom1998. Thought I’d pop in to see how you’re doing. I know the first..." + (show)
@loribmt

Good morning, @wyom1998. Thought I’d pop in to see how you’re doing. I know the first SCT didn’t work out as planned and you’re on a new regimen of meds. Is that working to lower your numbers? Do your doctors want a second try with a SCT?

Jump to this post

My numbers are slightly lower and platelets are low.
I would love car t-cell from what I have read, but it seems I have to be a bigger problem first.

REPLY
1 reply
tml | @tml | Jun 29, 2022
In reply to @tml "Hope so! Time is going so slowly and no dates yet. Nine more days of Revlimid..." + (show)
@tml

Hope so! Time is going so slowly and no dates yet. Nine more days of Revlimid and finally the myeloma labs. Just worried. Hope you are doing well!!!

Jump to this post

Ginger, you’ve been great!!! Thanks for all your support. I need to chill and not mourn the past as cannot change things. You are way stinger than I! Am a wimp but trying!!!

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