My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Hi Lori! So sorry it has taken me this long to respond! I hope you are doing well. I have had a busy spring, and summer! My PET scan in April showed "response to treatment"! It was the best PET scan of the 5 that I have had, in 2 years! The lesions are still there, of course, but no progression! Then, in June, I had my 1 year check up after the BMB, bone study, bone density scan, and lab work. We recieved the great news that I am in Complete Response! The Pomalyst 4 mg maintenance has worked. So this makes it easier to accept the side effects of pain and fatigue, that I am still experiencing. My specialist at Mayo wants me to continue the maintenance for the next year, then recheck. He did mention that the dose is sometimes adjusted, but I am afraid to rock the boat just now. I have MM and regular labs, locally, tomorrow. And every 2 months, if no problems.
So we will see . I am still on Synthroid for Hypothyroidism, which was diagnosed in December. My Thyroid was fine prior to SCT. My biggest concern is that I still do not feel I can work yet. Everyone tells me not to rush that. I did talk to my pharmacist, about the pain and fatigue that will not let up. She did tell me that both are side effects of the Pomalyst, as well as MM. My husband and I recieved both of the Covid Vaccines, late April/ May, in between all of my regular re-vaccinations. I had no serious side effects from either, except a sore arm with both, and slight fever for 1 day, and swollen lymph glands, after second. I stopped my Pomalyst for 5 weeks, per my hematologist recommendations (1 week before 1st, through 1 week after second), so hopefully I have some protection. Our Covid numbers have sky rocketed over the last 3 weeks. So I am back on lockdown, for now. And very sad about it all, too. We did have the children and grandchildren here for Easter. That was such a great day! And I did see the children and grands much more, while the pandemic had calmed down. Our "puppy", Bear, will be a year old on the 16th! He weighs about 110 pounds now! He is so swee, and keeps us both entertained, and busy! Sorry for the long post! I will try to get on here a little more often. Take care and stay safe!

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/

@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?

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!

@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?? ☺️

@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

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.

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

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?

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