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

@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.

@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.