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

@g4c
What a journey. You have walked through more than what so many of us have not!!! Oh, my goodness. But by your attitude, I believe that and your family have moved you through all this with hope. GVHD. Yikes!! You have had what i read about. Some who post on here have had some of what you speak of. So many different challenges.
Meeting your donor!!! Mine was 26 from Europe. A perfect match. I think i can write again, you just reminded me. My first note when to him. I would love a 2nd to go.
Pancytopenia after my chemo from breast cancer is what took my blood numbers low and lead to my hospitalization for multiple transfusions. A year after I was nearly done with treatments I was thinking of some normal life. I had been a platelet donor for 25 years. I knew that none of the drugs i had taken so far would keep me from donating again. Except i month after i took my last Lynparza pill, my white cells and platelets continued to drop. I thought crap. I cannot donate with these numbers. Within a few months I got one of my drs to write a referral to the hematologist. And i got the right person on the phone to "hear" me and called the hematology department. My decreasing numbers concerned the dr too. One BMB later, and low-mid MDS was presented to me. I have Brca2, TP53 mutation and a 5Q deletion. The Dr
I will say said if theyhad6ofmewiththis diagnosis and we did nothing, 3 would be dead in 5 years. When i was approached a couple weeks before my transplant about being in a research study, I went for it. Phase 2. I think there were 30 or so of us. It was a pill taken daily to prevent GVHD. I have not had GVHD.
I will add when i had my 1st round of chemo, I got what was called a chemo rash. It did not come back after a week.
g4c- I hope you get far more good days in 2026 that are free of any blood or body challenges. A day at a time.

@katgob @g4c @anitasharma. Good morning dear people! Ya’ll have me getting misty-eyed this morning while reading your replies. Of course, I cry at soap commercials some days but you three…you’ve all touched my heart in ways I could never have imagined years ago when I was first undergoing my medical odyssey. I can assure you, going through the thick of it, never once was there a thought of being a ‘tour guide’ or should I say, ‘survival guide’ for anyone else meandering through this battlefield with AML (insert your flavor of blood cancer) and a bone marrow transplant. So I am quite honored and immensely grateful to be in that position as a cancer survivor, thriver and over-comer! ☺️

Your lovely messages of support came at a very timely moment. Yesterday, coincidentally, was my 5th anniversary of being a mentor for Mayo Connect (though a member for 6 years). I owe this opportunity to Connect’s fearless leader, @colleenyoung who apparently saw something in me that might be of value to others. Back then, there were precious few SCT/BMT members and a small, but growing number of blood cancer members. Through Colleen’s outstanding leadership and guidance, we’ve continued to grow and flourish into an amazing online support family.

I’m humbled each day by the number of members who step up to answer questions, offer support, share their experiences and elicit empathy to complete strangers such as @alive who had a transplant almost a decade ago. We really do become family here! I harken back to my childhood when my mom and aunties ( or mom and neighbor ladies) would sit around the kitchen table drinking coffee and basically settling all the world’s problems. I realize now that it was basically a support group. And that’s what Connect feels like to me. That we’re all sitting around the kitchen table, from all corners of the planet, able to air our concerns, offer and receive support, share our stories, laugh, cry…well, you get the picture.

My goal is to continue to offer hope to people like @katgob, @g4c @anitasharm, @mary612 @jrwilli1 @dwolden and goodness, so many others who joined Connect asking questions about having a SCT/BMT. People needing reassurance that this procedure can work and then giving ‘permission’ to get on with your life instead of looking over your shoulder for the “Specter of what if”. ☺️. We were given a 2nd chance at life! We owe it to ourselves, our BMT teams, our families and our donor to get busy living our new life with positive zeal.

@katgob @g4c @anitasharma. Good morning dear people! Ya’ll have me getting misty-eyed this morning while reading your replies. Of course, I cry at soap commercials some days but you three…you’ve all touched my heart in ways I could never have imagined years ago when I was first undergoing my medical odyssey. I can assure you, going through the thick of it, never once was there a thought of being a ‘tour guide’ or should I say, ‘survival guide’ for anyone else meandering through this battlefield with AML (insert your flavor of blood cancer) and a bone marrow transplant. So I am quite honored and immensely grateful to be in that position as a cancer survivor, thriver and over-comer! ☺️

Your lovely messages of support came at a very timely moment. Yesterday, coincidentally, was my 5th anniversary of being a mentor for Mayo Connect (though a member for 6 years). I owe this opportunity to Connect’s fearless leader, @colleenyoung who apparently saw something in me that might be of value to others. Back then, there were precious few SCT/BMT members and a small, but growing number of blood cancer members. Through Colleen’s outstanding leadership and guidance, we’ve continued to grow and flourish into an amazing online support family.

I’m humbled each day by the number of members who step up to answer questions, offer support, share their experiences and elicit empathy to complete strangers such as @alive who had a transplant almost a decade ago. We really do become family here! I harken back to my childhood when my mom and aunties ( or mom and neighbor ladies) would sit around the kitchen table drinking coffee and basically settling all the world’s problems. I realize now that it was basically a support group. And that’s what Connect feels like to me. That we’re all sitting around the kitchen table, from all corners of the planet, able to air our concerns, offer and receive support, share our stories, laugh, cry…well, you get the picture.

My goal is to continue to offer hope to people like @katgob, @g4c @anitasharm, @mary612 @jrwilli1 @dwolden and goodness, so many others who joined Connect asking questions about having a SCT/BMT. People needing reassurance that this procedure can work and then giving ‘permission’ to get on with your life instead of looking over your shoulder for the “Specter of what if”. ☺️. We were given a 2nd chance at life! We owe it to ourselves, our BMT teams, our families and our donor to get busy living our new life with positive zeal.

Hey @katgob
Happy for your Craziness towards your amazing Journey So far . I feel so amazed while seeing all of your posts here ,it actually makes people motivated and acknowledged So keep posted such nice and beautiful thots and stories. Keep Going 👍😊
I would just like to say Hello everyone .... How are you doing in to 2026 ????
Well some of us going with many challenges , Transplants changes into body and mind physically mentally after effects and so on ....But at last Gratitude towards New Life after a Transplant.
Yes My husband completed almost 10 months post Bone Marrow Transplant for Acute Lymphoblastic Leukemia. By God grace he is doing good and enjoying the new life with me as wife my kids and his Parents all around . Life is full of Challenges and Pain BUT trust me at last it is worth for making your future life better in a way ,acceptable grateful and amazing .
I would like to ask a question here as our Anniversary is Coming few months ,Is it advisable to travel out of the Country any beach area or somewhere ??
After How much time of the transplant it is a good idea to travel and what precautions can someone should take after the Transplant ???
My husband wants to celebrate it and I don't want to say No but many questions arise before making it happen .
Please advise and let me know .
Hey @loribmt Missing you ??? Hope everything good at your end and enjoying the life .
Have a great day and Happy New Year everyone .
Pray Play and Party Hard guys.... Take care all

Hello All,
This Monday January 12, 2026 is Day 1000 since my bone marrow transplant back in 2023 after treatment for AML. Like Lori, I had several intermediate risk mutations and a bone marrow transplant was my only option. Until I found this site (and LORI) I thought everyone relapsed and lost the battle. However, now I am feeling good (pause to knock on wood) and hopefully will make it to April 19th for my 3 year anniversary. AML totally caught me by surprise in December 2022 during a routine annual checkup where they discovered I had pancytopenia (no physical symptoms). One month previous I had just submitted a 13000+ foot high mountain hiking in New Mexico. But then, the day after New Years I entered MD Anderson in Houston where I would get treated for the next 11 months. Too many drugs, scans, biopsies, and more to remember (although I have it all meticulously documented in a notebook). I was lucky to have a 24/7 devoted wife as a caretaker and medical advisor (she’s formerly a medical clinician). I did have thoughtful excellent medical care throughout the course of my treatment, very lucky. No treatment goes without challenges of course, mine was GVHD of the skin. But first, prior to the transplant, there was chemo to knock out the leukemia and I had infections, fever, skin necrosis and biopsies. Platelet counts ran low and I had trouble breathing from blood clots in my nose. Also got some chemo into my CSF in my spine. However, AML tested below the level of detection by the end! Next came prep for the transplant, wow a rigorous treatment to “burn down the house” i.e. get rid of my faulty bone marrow to make a vacancy for my donor’s marrow. Getting his marrow (a 22 year old angel from Germany) was the easiest part, just like a transfusion. The donor’s marrow was aggressive, he came in with “guns blazing” and we battled for the next 200 days before we reached a detente. There were months of steroids and topical creams to calm the skin GVHD, but to no avail. Eventually had to get 19 rounds of photopheresis where they draw out my blood and treat it to eliminate T-cells attacking me. The only upside was that perhaps he was also attacking any rogue residual leukemia cells left over. There was some collateral damage however, at one point with platelets down to 8, I had a bleed and retinal detachment in my left eye that resulted in 5 surgeries. The eye is still legally blind and blurry to this day. Also lost a lot of hearing and now have two hearing aids full time (The most prominent word in my vocabulary now is “what”). But wait, I never got brain fog which is great since my brain is my biggest claim to fame. I am still working on getting hemoglobin, hematocrit, WBC, and platelets up to normal but at least they are good enough to not need transfusions. Thank goodness! More happy news, my donor Noah has returned my emails and sent me a photo of him and his girlfriend. I don’t know what inspired this young man to do this but I wouldn’t be here without him. Those are real angels on Earth. Anyway, please know that I have come back from as Lori would say “within an inch of my life” to enjoying a new grandson, daughter getting married in April, hiked to the top of a 14er in Colorado this last summer and more. It can happen for you. Don’t give up until the miracle happens. Best wishes and love for you all. Special hugs to Lori, another angel on Earth. GRATEFUL!!!!!!!!!!!!!

@katgob Good morning, Kat! It has been a bit quiet in this group so thanks for waking us up! Happy New Year to you! Ah, the dreaded holiday scale creep! I think the old myth that calories don’t count during the holidays is false. LOL The scales tell me otherwise! Our daughter flew down to join us in our winter digs for a week over the holidays…two fold…to see her ‘elderly parents’ LOL and to escape the brutal Mpls weather for a bit. The weather could not have been more perfect here! It was actually unseasonably warm and dry so we spent a lot of time on the beach, walking, talking. There are several restaurants near us in walking distance where we can sit outside to dine. Of course we took advantage of that! Plates full of ‘non-caloric’ foods! 😂

Yesterday I received a call from my local oncologist office to set up a recall appointment in March. It will be my 7 year follow-up for my treatment of AML. The transplant would happen later at the end of June. It’s surreal to believe that 7 years ago right now I had cancer but didn’t even know it yet. It all became apparent about a month later when I was rushed to the hospital holding on by a toenail. Better living through chemistry! 2019 was a rough year but a new beginning to my life. There hasn’t been a day of regret or looking back over my shoulder.

I’m happy for you that you’re doing so well, Kat. You’ve paid your dues in the world of cancer journeys for sure! Now’s the time to continue to enjoy each day! Thank you for always being so encouraging and honest about your experiences. Squeezing through the ipad screen to give you a hug!! ☺️
Good luck with all your test results on the 23…not that you need it! I know they’re going to be stellar!

Hi @anitasharma! Happy New year to you and your family! You’ve had quite the past year so this is new, fresh start! ☺️
It’s amazing that your husband will be coming up on his first Cell-ebration or first Re-birth day as we say. That’s such a milestone and definitely one worth celebrating.

As for travel, first ask your husband’s doctor/team if it’s ok. But if he’s been feeling well and up to travel, there really shouldn’t be any reason not to go somewhere to celebrate. I was post transplant 7 months and we drove down to our winter home for a couple of months. When asking my BMT team if they knew of any reason why I shouldn’t, even my doctor replied, “We didn’t do all this work to save your life for you to sit around! Get out and enjoy life.” So we did!
At that time, I was receiving some infusions and my nurse coordinator made arrangements with a local hospital where we’d be in Florida, to complete my weekly medications. It worked flawlessly.
If there’s air travel it’s advisable to mask up and be mindful of germy situations with large indoor crowds, that type of thing. But you know the drill. You’ve been living it the past year.
Always so great to hear from you, Anita! My fondest wishes for continued robust recovery for your husband and health and happiness for you and your family. 🥰