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.

bacher | @bacher | Mar 23 12:01pm

I had a SCT 18 months ago at the age of almost 74. I was healthy until my AML diagnosis but did not have any physical issues with the transplant. My current medication is a vitamin pill. However, at this point in my recovery I am still experiencing fatigue. Some days I feel absolutely normal. Other days, I need a nap! I eat well and exercise daily. Is this normal?

Lori, Volunteer Mentor | @loribmt | Mar 23 11:54am

In reply to @bettersleep68 "It is not a bone marrow transplant....it is a bone marrow biopsy checking the blasts..thank you..." + (show)

Oh my gosh, talk about a brain ‘fuuffff’. I totally went rogue with this one…sorry about that! We’ve had a few new transplant members in the past couple of days so that’s where my head was! So, we’ll bring this back down to a BMBX instead of a BMT. 😀

This bone marrow biopsy will be a good source of information to see if there was success with the chemo. I’ll keep my fingers, toes, and eyes crossed for you for a clean biopsy!
I remember you’d been dealing with back issues that had interfered with the start of the next round of chemo. Were you able to continue with the 2nd session?

bettersleep68 | @bettersleep68 | Mar 23 11:01am

It is not a bone marrow transplant....it is a bone marrow biopsy checking the blasts..thank you for all your positive thought

Lori, Volunteer Mentor | @loribmt | Mar 23 10:41am

In reply to @bettersleep68 "Lori Having my bone marrow in April I hope I get good news" + (show)

Good morning, @bettersleep68 Getting the go ahead for the bone marrow transplant is great news, though I know it comes with a heavy load of anxiety. I’ll be here, along with what I affectionately call my BMT Posse to get you through it from our side of our computers!

What questions do you have that I can help you with? Are you near the transplant center? Have you gotten the information as to whether you’re an in-patient at the hospital where this takes place? How long will you be required to stay?

bettersleep68 | @bettersleep68 | Mar 23 9:57am

Lori
Having my bone marrow in April
I hope I get good news

drawlings0803 | @drawlings0803 | Mar 22 6:11pm

In reply to @loribmt "Hi @drawlings0803. I’m so glad to hear you had such a great visit with your new..." + (show)

Hi Lori-
Thanks so much for your words of encouragement!
Yes, having a plan is reassuring as well as knowing you & this group are here.
Fortunately, my Dr said I could get the infusions at Houston Methodist The Woodlands, which is a lovely facility closer to my home. I will also be able to do tele visits with him.
I don’t really mind driving to the Texas Medical Center, but if I can avoid the stress of traffic, then I’m all for it!
I’m trying to take it one day at a time -SO hard for me to do! But, it’s really all we can do.
Good to know we can talk more about the BMT as mine gets closer.
Diane

Lori, Volunteer Mentor | @loribmt | Mar 22 4:59pm

In reply to @drawlings0803 "Hi Lori - Wanted to update you on my visit with the new hematologist yesterday. Well..." + (show)

Hi @drawlings0803. I’m so glad to hear you had such a great visit with your new hematologist! Having someone that you feel is in your corner can make all the difference in the world.
The treatment plan is pretty standard with the goal of getting you into remission so that you can go ahead with the BMT. You’ll have a BMT team who will take excellent care of you wherever you’re having the procedure. And you have me, along with other members like @katgob who have had a BMT for MDS who will walk you along the path from the other side of the computer.
When you get closer to having a target date for the transplant we can talk more about what to expect, how to plan for an extended stay at a clinic, the transplant itself and recovery. It all feels intimidating, I know. But this is doable and gives you an all important second chance at life. Makes it worth the few months down time. Lots of lounging. ☺️

I hope you have a great weekend now, too! I always feel better and encouraged when I have a plan that allows me to move forward. I think you’re feeling that too.
Are the infusions at the clinic that’s 40 miles away or are you able to have that done locally?

drawlings0803 | @drawlings0803 | Mar 22 9:32am

Hi Lori -
Wanted to update you on my visit with the new hematologist yesterday.
Well I absolutely loved him! He explained my MDS-MPN is most likely related to my chemotherapy treatments years ago. That said, he said let’s go forward with treatment.
I will start chemotherapy with Dacogen on March 31. I think I’ll have 3 rounds of that. It’s 5 days in a row, then I take a break for maybe a month (I think). Then, he said definitely a BMT would be done. That’s several months away right now.
I felt so much better after visiting with him yesterday and although it’s scary facing chemo again, I’m optimistic and very happy there’s treatment for me.
Any advice on your BMT experience would be appreciated!!
Thanks and hope you have a great weekend!

drawlings0803 | @drawlings0803 | Mar 20 12:51pm

In reply to @loribmt "Hi @drawlings0803 It’s a good thing you had the biopsy so that your doctor could get..." + (show)

Yes, tomorrow at 9:20. Will keep you posted!

Lori, Volunteer Mentor | @loribmt | Mar 20 10:25am

In reply to @drawlings0803 "Hi Lori - I told you I would let you know my bone marrow biopsy results...." + (show)

Hi @drawlings0803 It’s a good thing you had the biopsy so that your doctor could get a firm diagnosis for you. Now you can start the treatment you need to get ‘back to business as usual’. As @katgob mentioned, there are different levels or subtypes of MDS. Some variants don’t require a bone marrow transplant and can be managed with medications. So your meeting with the new hematologist will be informative for you.

You probably have some questions for the doctor. I’ve found it can be really helpful to write them down in a little notebook that you can bring along to your appointment. I tend to get off track easily and my notebook is great for not forgetting my questions. Also, taking a loved one or friend along is a good idea for an extra set of ears. ☺️ Being larger medical facilities I think either TMC or MDAnderson are great choices for your care.

Thank you for this update! I hope you feel comfortable with your new doctor and look forward to more updates. Is your next appointment scheduled yet?

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