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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
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?
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@loribmt Lori you now have me smiling and laughing at your image of reading my post 😁. Thank you so much for celebrating this news with me in your positive and caring manner! You are an amazing person and MCC mentor. 💛 I will say again how much I appreciate Dr. Moustafa and his endless compassion and patience with me as I have stumbled my way (mentally and physically with the early balance issues lol) into being a CNS lymphoma survivor. Another fortunate part of this experience for me. So much to be thankful for. 🙏
I am still not sure I understand all of the complexities with CNS lymphoma and the challenges and variations in treatment, but he has helped to educate me a little more. I see him again in January after my next scans and will probably have something else to ask lol. The more I learn, the more I realize there is so much I still don’t know. 🙂 Thanks again Lori!
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3 ReactionsDoing well. I finally got my taste buds back and starting to eat a littlemore. Unfortunately Monday I was hospitalized for sever neck and mid back pain. I can't seem to catch a break.
On the bright side I became 100% my donors blood and bone marrow on September 23rd.
Thank you for checking on me. Hope your doing well.
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3 ReactionsGood morning, Mary Lou! I can sure share your joy of having those taste buds return! It seemed to take forever for me! They had disappeared months before the transplant with all the chemo treatments for my AML. Hard to forget how awful food felt in the mouth, and then no taste. Eating a piece of cheese felt like sucking on a stick of butter, everything else was like cardboard! I’m so happy you’re able to ‘savor the flavor’ again and have the mouth feels! Eating cardboard wasn’t fun! LOL
It sounds like your recovery is moving along nicely. If I counted correctly today is Day +68 and 2/3s of the way to your 100 days! Congrats with the great chimerism report!
What’s going on with your neck and back? Are you still in the hospital?
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1 ReactionHi everyone. Today is Day 91 post allogenic transplant for my dear husband. We have had plenty of experiences so glad to be at this point and doing ok.
He had the transplant because of being diagnosed with MDS (one year ago tomorrow). Because of his “high risk” disease and cells of “concern” at the 60 day bone marrow biopsy, his doctor has ordered six cycles of “maintenance chemo.” The first cycle really took out his new blood counts and he was feeling quite ill (also had a recurrence of c diff). Does anyone else have experience with post allo maintenance chemo?
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1 ReactionIt sure is quiet out there. I only remember my day past transplant when i check my notes on my phone. April 9th. My hair is finally covering my head. A bit red still but more brownish. I need more to know. Having lost all my hair in late 2021 has not made this time easier in terms of how fast it grows. I do want to say a friend had said once as my hair hit my shoulders in 2023 if i wanted to go get my hair cut to trim my split ends. Split ends I said? All my hair is brand new!!!!
I went to the dermatologist last Wednesday and he burned off three spots and said come back in a year. Unless something looks odd. This and a colonoscopy result of see you in ten years is a blessing after cancer and a bone marrow transplant.
Walking no less than 12,000 steps a day..................a 2nd Birthday from the bone marrow transplant got me to commit.
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5 ReactionsHi Kat! We go through spits and spurts in some of the discussions, don’t we! But it’s like with old friends…we pick up where we left off. I often think of our groups in Connect as a Kaffeeklatsch where we break during the day to spend time with ‘family and friends’… I have fond memories of my mom, aunties and gramma or mom and her neighbors sitting around the kitchen table spilling their guts along with the coffee! I think most of the world’s problems were solved around that old table! Fast forward, now it’s me chatting with strangers who have become friends, through my computer screen ☺️
Time to check in with everyone! Thanks for starting it off today, @katgob! You’ve had a heckuva year from where you and I first began our discussion on your possible BMT. Now that’s in the rear view mirror and you’re speeding through an epic recovery!! 💖
Let’s “Rock the Casbah” and bring in some of the newbies, along with some veteran Allo-transplant members this morning to see how everyone is doing! @dwolden @katgob @mary612 @graycoose @susancurrit @wakop @jrwilli1 @tkidd51 @bevprescott @alohasteve @caregiverx2 @clock456 @avaleir @alive @edb1123 @kt2013 @jenmkr63 @maryb13350
If I’ve forgotten some names please forgive me but jump into the conversation along with the veterans of our BMT group!
We all have so much for which to be thankful…not only for the 2nd chance at life that we’ve been given. But for what it allows us to achieve! It’s a constant source of inspiration for me to not take a moment for granted. That doesn’t mean I don’t waste time or that there aren’t days without some negative thoughts lurking around the corner. But I try to savor the small things in life, look for hidden joy, practice mindfulness and positive affirmations. Most days I feel like Super Woman gifted with a power! Ha ha, I wish it was her body… le sigh… Alas, my super power is being perpetually perky! That’s a power to be used with extreme caution. It can be used for good or evil!! 😅
How has your life changed since your BMT? Any super powers, changes in how you live your life? Any notes of encouragement for those just starting out in this journey?
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3 ReactionsHi, Lori: I am coming up on 5 years since my AML diagnosis and BMT next July. Other than some issues with high liver enzymes due to GVHD, I am doing great! I’m physically active, golfing and playing pickleball, living a normal life! I appreciate every day, my friends, and family. It definitely gives you a new perspective and appreciation for good health. I’m forever grateful for the wonderful doctors and nurses who helped me through my AML journey!
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9 ReactionsLori, I’m goi g to pop in here. You haven’t heard from us for a while. Believe it or not my husband will be 2 yrs from transplant on Feb 15. Yes a lot of ups and downs but well worth it. Blessed second chances. Just last Dec we weren’t even sure if he would make it to his 70 birthday. This weekend he will be 71. Amen. He has a few complications from the chemo but nothing too extreme. I truthfully believe if he didn’t have Parkinson’s he would be running marathons. Still doing his climb exercises but his scoliosis is getting more severe as well. But he is a fighter. All worth it everyone waiting to do a transplant. Do it.😘
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7 ReactionsDay 106 post allogenic transplant for my beloved husband. It’s been quite a ride. His transplant was at Mayo Rochester. We lived in a nice little apartment in Rochester for four and a half months for the process. We were released last week and came home to our precious house in the Northwoods of Wisconsin, 200 miles from Rochester and our first trip home since pretransplant testing started back in July.
David needs five more cycles of “maintenance chemo” to try to ensure his high risk MDS does not recur. His blood counts are all still low because of that.
But we are both so happy, overwhelmed with joy to be back at home. Every day is a gift and a wonder.
He will begin today to get follow up care at our local cancer center with additional trips back to Mayo for tests and clinic visits as needed.
So it’s still a lot, but as yet we have not seen any GVHD symptoms. Watching for that, managing the interface between the medical entities and grimly seeing the bills left after insurance coverage come in, but we are together, closer than ever and so grateful for this opportunity to live and love.
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8 ReactionsGood morning! Happy Birthday to your husband! I’ll be 71 in January…shhhh. How did that happen??!! 😅 But what a gift we’ve been given, to have that 2nd chance. Both your husband and I would not be around to commiserate about turning 71! Now it’s a bragging right! LOL.
He’s also very lucky to have such a lovely and dedicated caregiver. You’re a trooper right along with him! I wish you both a joyous holiday season and an ‘uneventful’, healthy New Year. ☺️
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