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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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@caregiverx2 Welcome to Mayo Clinic Connect! I’m so glad you found this site especially given your reluctance to use social media. I’ve posted 2 discussions for you to check out. One is for caregiver advice
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
And this one is about the journey. It was started by @loribmt who is a mentor for Mayo Connect. She is great at answering your questions!
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope this will be a good start for you. Please feel free to ask any questions you have! BTW, how did you find Mayo Connect?
Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.
I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.
I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.
If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.
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3 ReactionsI will update later. My whole post vanished as a Mayo Clinic survey popped! Guess Day 8 and my others days will come later.
As I knew by your timeline on your transplant, I am on target. Where I am supposed to be.
For sure my "not in oz" was day 3 realizing I had 2 chemos for the rejection coming.
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1 ReactionHi Kat…didn’t want to let another day go by without checking in! Day 8? That’s about the time things started to get a little dicey for me. How are you feeling?
Lori,
My update. So far keeping nausea away. Today and tomorrow I have the 2 chemos for the research study. I must say I did not ask what the medicine was. Plus, due to the numbers of my 24 hr urine test weeks ago, I must have a catheter for hydration for two days.
As I have been doing, I am listening to my nurses and the doctor team that come by daily.
I will ask for compazine if the nausea increases. That will help me sleep as my urine is processed for me.
By the 14th my anti rejection meds start.
Thank you Lori. I am remaining positive and hearing the doctors say I am doing well.
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2 ReactionsHi @katgob…sending a hug. Day 3 for you! The next two weeks can be pretty challenging as your body starts feeling the after-effects of the preconditioning chemo and the transplant itself. As soon as those new cells engraft in your marrow, usually 14 to 20 days after infusion, you’ll start to feel much better again as the bone marrow starts producing new blood cells!
Just so you’re aware, fatigue will be your constant companion for a while. Don’t try to push yourself because it can’t be done. Just listen to your body when it tells you to rest. It’s not a failure on your part! So do your best to keep your spirits up during this period. It passes! Sending positive vibes for strength and courage. 💕
Good morning @katgob! Happy Rebirth Day! Wishing you a smooth transition into your 2nd life as you get the infusion of stem cells. Pretty anticlimactic after all the buildup because it only takes about 20 minutes, but gives you a new lifetime. 💚💙
Over the next couple of weeks you’ll most likely feel very tired and possibly nauseated. This will pass so keep up your good spirits. Sending an air hug! 🧬
Yes, so far, so good. Simple dinner and looking for how I feel. I have napped acouple 30 minute bits.
I love the support. I will cover the nurses and staff who help me on the way. Walking is something promoted and the route around floor six is marked by feet on the baseboards.
I watched the minion shows for 1 hour. It made it easy to focus. Fun.
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1 ReactionMinions!! Well, if that isn’t a sign!!! 🥰 There’s no emoji for a Minion or I would have put that in here. ☺️
You’ll be a rock star patient with your positive and easy attitude.
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1 ReactionFunny, scrolling for what to watch before my chemo at noon, having my 2nd clotromazole pill, one yesterday. Waiting for the hour of ice chips I will keep my mouth frozen with, so the melphalan will STAY OUT. What does my channel flipper land on but minions.
GOD IS IN MY ROOM.
My PCA this shift says I am the easiest patient. Do not ask for more than I need.
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