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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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Lori,
Thank you. I tried to let her know, yet i could never get her to follow besides the original diagnosis. The estrangement between my younger brother and sister was lightened while sending my sisters spirit to heaven. All siblings were with my past away sister knowing we were now 4 instead of five. The last of the 4 of us plans to get the genetic test. I tried not to bring up my sister's choices, but i thanked the whole nursing staff and the unique respiratory therapist who worked with my sister Saturday night. My sister laughed some and followed nearly every exercise he offered. None of them saw Friday as being the day she would pass. My sisters body says now. No oxygen, no life.
@katgob Oh Kat, I’m so sorry for your loss of your sister. She was so young at 68 and I wish the outcome had been different both you and your entire family. I know you struggled with your sister’s decision all along. But after all, it is her decision and ultimately her life. You did the best you could to inform your siblings of the possibility of the mutations inherent in your family. Some people want to know…others choose to forgo the information and do nothing preemptively. I’ve seen this with other families. Some people just don’t want to know!
I am deeply sorry that your sister has passed away. This is a very sad time for you and your siblings to have lost one of you…so many shared memories over a lifetime. It is lovely that you were all able to be together with your sister. Please know that I’m thinking of you and your family as you cope with this loss. Hugs…
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1 ReactionTo all my fellows here, I know i need to share. Many of you may know my story of my sister. She is my older sister by 2 years. When i got my diagnosis of breast cancer, she covered her ears when i said i was getting a double mastectomy. I took a genetic test at the City of Hope and was found to have BRCA2 and another mutation with unknown significance. Later it would turn out to be a TP53 mutation and a 5Q deletion taking me to my bone marrow transplant in April of 2024.
I received a family letter in August of 2021. All 4 of my siblings got it. Yesterday i found out that my brother who had worked at the COH never got tested. My older sister chose not to either. My other 2 siblings tested, and both had the mutations i did. By brother told me yesterday he is going to be tested.
My sister called me two years ago crying, she was diagnosed with ovarian cancer. By this time both her sisters had their ovaries and fallopian tubes removed. I asked her to please go to COH and see Dr. Lee. She did and at the start she was grateful. But she turned a corner. She did not like her assigned oncologist. Did not trust he listened to her. She had a complete hysterectomy with Dr. Lee, but sad to say she sought out functional medicine plans and other treatments she researched. With her husband's urging in 2024 she returned to conventional treatments. Sadly, she had GI issues, intestinal blockages and more in the last year. Never, ever did she give her siblings the whole truth. I have spent much of the last few months visiting her in hospitals. Sitting with her to support her but knowing it was not good. Finally last Thursday she got a a different hospital that is a "trauma" hospital. She passed away late yesterday. Her body could no longer keep her oxygen levels up. I had been keeping my brothers informed and my younger sister had come from NY. By my sisters passing we all were with her. The day before she was more like herself then she had been for months as i had seen her. God's grace.
My sister was private. I do not know any site like this she participated in although I told her about it, i am not sure she has looked at this one or any other.
Even up till her very last day she was checking how we were. 68 years old.
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1 Reaction@loribmt
I must say with my transplant in April of2024, Lori's lists helped me tremendously. I used the City of Hope's info they gave me and added Lori's. Next to nothing was a surprise. I hope you keep us posted Wanda. I am never happy to see anyone need a BMT, but happy when someone is having one that needs info. It is a life changing procedure.
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3 Reactions@gagathemom Hi Wanda, getting ready for this ASCT (autologous stem cell transplant) an feel pretty overwhelming. Just the logistics alone can feel mind boggling. But somehow, all those pieces just seem to fall into place. For an ASCT, patients usually can assume 3-4 weeks lodging. I know you have a place locked in for 3 weeks. If you need an extension, often landlords in Rochester are pretty flexible….on either end. With extensions and early exits. There are also a ton of hotels nearby that you could relocate to if needed. But by 3 weeks you might get the all-clear to head home. Your SCT team will be able to give you a heads up for an exit projection.
comprehensive about transplants, caregiver information, after care. There are several subject headings.
Not sure if you’ve seen this or not, but here is a good care guide from Mayo for SCT/BMT and CAR=T patients and caregivers. There are several topic headings so take your time to peruse everything that’s relevant from caregivers guide, what to pack, infection control, etc.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
Haha, dare I say, “You’ve got this”…😂. Joking aside, as a planner myself I know how we like to have everything nicely sewn up, details in place and nothing left to chance. I had a zillion sticky notes and note pads with lists of items to make our hotel stay a ‘home away from home’.
Here’s a comment posted a while regarding items I packed for my 4 month stay. You might find a few ideas. https://connect.mayoclinic.org/comment/1059221/
Let me know if I can help with anything else! ☺️ What kind of dog do you have?
@loribmt You put words together beautifully!
I rented a pet friendly vrbo house for 3 weeks. Too optimistic of me?
If I recover quickly, I would hate to be out the non refundable money for the house if I rent it, or another, for another 2 weeks or more. However, it would be challenging to find another place to stay if I need to stay longer. Packing, cleaning, relocating. I’m still trying to figure that out. As I write this, I feel like it sounds negative. I’m grateful for so much but I am a planner and I am stumped.
I understand that every cancer, every treatment and every person is unique. I’m trying to get a plan in place so I can stop thinking about it and enjoy some time with my grandchildren when they come to visit.
Thank you for responding. I appreciate you. Wanda
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1 Reaction@gagathemom The words “you’ve got it” coming from people who had never experienced what you are going through sounds to me like “quit complaining, you will be fine “. It sounds very different when it comes from a person who had experienced it.
As someone who had a SCT for AML, I think your general good health will give you an extra boost as you have your transplant. Using your own cells also means that you won’t have GVHD and your recovery will be quicker than mine was.
Wishing you an uncomplicated transplant and recovery!
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1 ReactionGood morning, @gagathemom “You’ve got this!” It’s interesting how those words can either give someone a nudge or completely turn them off. The night I was admitted to the hospital, having been diagnosed that afternoon with acute myeloid leukemia (AML), the nurses brought me a rather large gift bag. The bag had been put together for them by a former patient who had AML with the instructions to give this bag to a new patient…me.
Inside were a number of items including a hand made fleece neck warmer, a lap-sized fleece blanket, adult coloring book with a box of colored pencils, Burt’s Bees chap stick/hand lotion, cute little socks. The gift tag, which I still use as a bookmark 7 years later, said, “Stay Strong. Stay Positive! You’ve got this!!”
Being absolutely cut off at the knees with the diagnosis that afternoon, those words resonated with me! They still do and as a mentor in the Blood Cancer and also the Bone marrow/stem cell transplantation groups, I find myself using those words to encourage others. All of us have within us the ability for, “You’ve got this”, to handle whatever it takes to keep us alive, inspired and moving forward. (But I promise not to say it to you! 😅)
You’re going to be in excellent care with your SCT team at Mayo-Rochester as you’ve already found out. That was my home away from home for 4 months. Your autologous (ASCT) stem cell transplant, fortunately won’t require that length of time but you will be there a month or so while you recover. Being fiercely independent myself, I completely empathize with your struggle with requiring a caregiver! But once you’re actually underway with the transplant recovery, I’m pretty sure you’ll find yourself relaxing into the assistance during the moments when you need it most. After that, your drive for independence will help you recover faster by the desire to get back to normal. In the meantime, accept the help with the daily mundane tasks. That way your energy is reserved so you can take a shower without assistance, get dressed, etc. Having assistance helps you pace yourself because the fatigue the first couple of weeks will sap your strength.
I think what you’ll miss most during recovery, are snuggles from your grandkids! But they can send you cards, you can face-time or Zoom and that time will go quickly!
Do you have any questions about the transplant itself? Are you set with longterm lodging in Rochester?
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2 Reactions@gagathemom you’re post says it all for me as well. I hear so frequently that we are in good health but have blood cancer. The struggle is to focus on the now - experience life without the cancer cloud over shadowing. Thank you for your post!
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1 ReactionJuly 2025 after breaking my back helping someone move, I was diagnosed with plasmacytoma on my vertebrae. September 2025 I successfully received radiation on my vertebrae however cancer was found in my iliac (pelvic bone) so my diagnosis changed to multiple myeloma. Starting January 2026 I had 4 cycles (4 months) of weekly chemo and support medication which was manageable. My local oncologist recommended I have a stem cell transplant so I was hooked up with Mayo Clinic in Rochester.
I was/am a good candidate for a stem cell transplant.
May 2025 I spent 8 days at Mayo which included the most thorough study of my body by a team of medical professionals. I had a successful collection of my stem cells, which are now frozen, and I will have my cells transplanted in July 2026 allowing me a bit of time with my grandchildren this summer. My oncology team agreed that this would be okay.
Physically I am managing. My main side effects are fatigue and back ache. Fortunately I am retired so I do try to stay active and force myself take guilt free breaks.
I’m not afraid or depressed but I have always been a caregiver, so I am struggling with being dependent on someone to take care of me, and I’m also quite private about my bodily functions.
I am 71 years old and other than cancer I am pretty healthy. I don’t feel sorry for myself. I have had a good life.
My husband will be my caregiver but because his 1st wife died at age 59 after 3 years of cancer treatments and a stem cell transplant, I am acutely aware of his loss and his experience, so I try to stay upbeat and positive for his sake.
However, I have moments where I am scared and sad. Mostly scared of the unknown. When people say “ you’ve got this” it annoys the heck out of me even though I know they mean well.
I know I can’t avoid what’s ahead and I have to go through it. The diarrhea, vomiting, losing my hair, being away from my home and kids and grandkids.
Yes, I am grateful for an amazing oncology team and all. And therapy and food and a roof over my head but I have found that cancer is very lonely and isolating, so thanks for letting me vent!
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