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 Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Apr 10, 2021

In reply to @pamh480 "Hi Lori—I had my 2nd Pfizer dose on Thursday, after ear surgery for. Cholesteatoma on Tuesday...." + (show)

Hi Pam, oh I’m sorry to hear you’re feeling nasty after the second shot. Can you take an Advil or Tylenol? It will help you feel better getting rid of the fever.

I was actually surprised I didn’t have a reaction this time. Apparently it’s pretty common with round 2.
In regard to my story about the shot yesterday, I’m on a FB group where we discuss stem cell transplants. So I posted my little chuckle on there too about my having a male immune system. One of my fellow transplant friends asked me how I was feeling today. She also got cells from a young man and had an easy time with the vaccine. So she was curious as to my reaction. Couldn’t resist telling her, “I took it like a man!” 😅
Hope you feel better soon! Beats getting the virus!! Lori.

pamh480 | @pamh480 | Apr 10, 2021

In reply to @loribmt "Hi Pam, oh I’m sorry to hear you’re feeling nasty after the second shot. Can you..." + (show)

Haha! I would say you took it like a WO-man! It is interesting. My donor was female....hmmm....

Lori, Volunteer Mentor | @loribmt | Apr 10, 2021

In reply to @pamh480 "Haha! I would say you took it like a WO-man! It is interesting. My donor was..." + (show)

HA! Yes, a Wo-man! A much better way to state that!! 😂 And if you get technical I guess I AM a Wo-man!! My chimerism shows I have XY chromosomes of a man. Not female XX.

Joking aside, I wished I’d asked my transplant doctor Tuesday when I had an appointment with him if it would have any bearing on the vaccine reaction. It’s probably too vague to even know that. Weird stuff!
Do you find you have odd questions like that too? Like what are the significant differences when there’s an opposite sex stem cell transplant? I understand the difference between male and female responses to the covid vaccine. Apparently women have a stronger immune system and it can be hormone driven. But if I have a male’s immune system, would I have the reaction of a male?
From information I’ve gathered I also know that doctors try to avoid giving a male a female donor if she’s had a child and especially if she’s had more than one. There’s so much science behind all of this!

An odd thing I’ve found is that I heal incredibly quickly! Whether it’s a burn on the hand, a scratch or abrasion, it’s gone within a day or two!
Do you have any unusual stories?

Ginger, Volunteer Mentor | @gingerw | Apr 10, 2021

In reply to @loribmt "HA! Yes, a Wo-man! A much better way to state that!! 😂 And if you get..." + (show)

@loribmt Although I have not had an SCT, I find these discovered differences to be absolutely fascinating! Wow!
Ginger

Lori, Volunteer Mentor | @loribmt | Apr 11, 2021

In reply to @gingerw "@loribmt Although I have not had an SCT, I find these discovered differences to be absolutely..." + (show)

Ginger, I remember my daughter’s words when I started undergoing all the treatment for AML and the SCT, “Mom, this would be an utterly fascinating scientific adventure if it wasn’t happening to you.”

Receiving someone else’s stem cells, which then set up housekeeping in the bone marrow of the recipient is truly incredible. The process is so involved, requiring significant matching of genetic biomarkers. In my case I had one person out of 20 million match me 10 for 10, which is a significant match for someone completely unrelated to me. It’s the best we could have hoped for.
A peripheral stem cell transplant (from donor blood) and a bone marrow transplant (marrow aspirated from donor) provide the same outcome. The newly transplanted cells, whether placed into the bone by injection or into the blood stream by transfusion all end up in the marrow, essentially transplanting the bone marrow. So, that’s why you’ll hear people say they’ve had a bone marrow transplant even if it was a stem cell transplant. They have new bone marrow either way. The procedure is different, the outcome is the goal.

My husband affectionately refers to me a little Frankenstein monster because I now have two sets of DNA, making me a Chimera. If you were to take a swab from the inside of my mouth, I’m still ‘me’. If doing a DNA sample from my blood, I am 100% my donors DNA and his blood type. Perfect scenario for a murder mystery! I thought it would make a great plot of a book, but it’s been done already. 😀

As you can imagine, there are some major adjustments when an entirely new blood type and immune system takes over the controls. With an organ transplant, the recipient takes meds so the new organ doesn’t get rejected by the body. With a SCT/BMT it’s the entire body of the recipient that can be rejected by the new immune system! So meds are a must until the two can learn to play together. Takes time!

Sorry! I could talk about Stem Cell/Bone Marrow transplants for hours. Two years ago I had no concept of the process. Now, it’s like learning a new language through immersion! I’m well versed. LOL.

Ginger, Volunteer Mentor | @gingerw | Apr 11, 2021

In reply to @loribmt "Ginger, I remember my daughter’s words when I started undergoing all the treatment for AML and..." + (show)

@loribmt

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@loribmt Thank you for more information. It is just so fascinating! And a life saver for anyone going through it. I completely understand about being able to speak on a health issue/concern. Knowledge is key to responding well, and my herd of issues has given me quite a opportunity to learn things, and how it all works together. The physical body is an amazing thing!
Ginger

Lori, Volunteer Mentor | @loribmt | Apr 15, 2021

In reply to @lisal64 "Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together!..." + (show)

@lisal64

Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!

Jump to this post

@lisal64 Hi Lisa, Thought I’d pop in today to see how you’re doing. It’s been a while since we’ve chatted.

Have you had the PET scan yet to check on the condition of your bones? I know it’s like sitting on pins and needles waiting for results sometimes. For your sake, I certainly hope there’s improvement and no new lesions. You’ve been through enough of this!

I have to share this. I know you love dogs and your puppy is a little godsend for you. Our neighbors have a little 8 week Golden!! My heart is now lost... I get to enjoy this little furball now until the time is right for us to get a dog again. So cute!!

Were you able to get your Covid vaccination yet? And, when is the reunion with the Grands?? ☺️

waveg | @waveg | May 6, 2021

It’s never a dull moment with SCT!
My liver functions went back to normal, but then last week my platelets tanked to 8, in just one week. So, I was admitted into Mayo for 3 days for platelets, igg and steroids. Numbers came up, but today back down again (96). So, it’s a juggling act. My tacro is .5mg/day plus acyclovir and voriconazole.
No more 3 x week Bactrim but now pentamidine nebulizer once a month.
One odd thing is that 2/3 weeks prior to my low platelets, I received my first set of vaccinations, 7 of them at once but not the Covid vaccine yet. I’m hoping this was an underlying factor.
My bone marrow and CD33 are both 100% donor and CD3 is still 80% donor.
So the juggling continues. I am very grateful for my Mayo team and look forward to when I can get away for travels. My best wishes wishes to all!

Lori, Volunteer Mentor | @loribmt | May 6, 2021

In reply to @waveg "It’s never a dull moment with SCT! My liver functions went back to normal, but then..." + (show)

@waveg I always say we SCT patients need to keep a sense of humor and a sense of adventure. Never quite know from day to day what fun, delightful obstacle will drop in our path! LOL

It’s great your liver numbers are back up. But it sounds like knife juggling is out for a while with low platelets. ☺️
It’s interesting that the change came within that 2-3 week period where the immune system starts the adaptive immune response.

When we get our vaccinations after transplant they’re intentionally ‘dumped’ together. We get the greatest benefit and response from our new immune system when we receive all of our vaccines at one time. So our new defense mechanism really gets a chance to be aggressive.
The steroids stop the over aggressive response. Hopefully this is just a reaction to the vaccinations and all will be back to normal soon enough.

You had an IgG test run to test for inflammation/infection and immune response. Did your transplant team have any comments regarding this?

It is a juggling act when balancing meds. Our bodies are so unique at this point, ‘one size does not fit all’. Your immune system is still in early stages of development. It isn’t considered adult until the 2 year mark.
You’re no longer an infant but you are early teens. LOL It’s still pretty temperamental.
So hang in there! Eat foods rich in vitamin K, green leafy veggies, carrots, folate, milk, etc..
When’s your next blood test?

Colleen Young, Connect Director | @colleenyoung | Jul 30, 2021

Learn more about fellow member and volunteer mentor @loribmt in this Member Spotlight. Lori shares with fellow member Rosemary why she likes to be Mayo-naised and the quote and life motto that guide her moral compass and motivation for helping others.

– I’ll take an order of Hope with a side of Mayo, please! – Meet @loribmt https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/

Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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