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 | @hopefuldaughter | Jul 27, 2022

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!

Ginger, Volunteer Mentor | @gingerw | Jul 26, 2022

@tml Checking in with you. Have you had your transplant yet? How are you doing?
Ginger

tml | @tml | Jun 30, 2022

In reply to @wyom1998 "My numbers are slightly lower and platelets are low. I would love car t-cell from what..." + (show)

Me, too.

Ginger, Volunteer Mentor | @gingerw | Jun 29, 2022

In reply to @tml "Ginger, you’ve been great!!! Thanks for all your support. I need to chill and not mourn..." + (show)

@tml You'll find that our nature is to hyper-focus on something like the transplant. It's what we do as humans, but that doesn't mean it is healthy for us! Take a deep breath, and understand that things will happen as they are supposed to. Your numbers bounced up a bit, but, you knw they will be coming back down.

You're so right, we cannot change the past. But we can make our present and our future as good for us as possible. It will happen, trust in yourself.
Ginger

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)

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!!!

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)

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.

Lori, Volunteer Mentor | @loribmt | Jun 29, 2022

In reply to @wyom1998 "Paraprotein .9 Kappa 1.73 Lamba .17 Ratio 10.18" + (show)

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?

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)

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!!!

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)

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!!

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 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

View More View Less

Please sign in or register to post a reply.