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.

@loribmt
Amen to that- truer words have never been spoken

@loribmt I appreciate how thoughtful and researched your answers are! You really put time and care when you reply to people whose world has been turned upside down by the diagnosis.

I remember that I had no idea what ALM was when I was diagnosed. I quickly had to navigate the discussions about chemo, transplant and GVHD. What a learning curve while my brain was fried by chemo!

You provide guidance to people who are at their lowest point and give them hope. I am very happy when I can share my experiences as well. We each are able to bring our unique experiences, since blood cancer don’t use the same script when they attack.

Thank you again for all you do!

Hi! I’m new to the site! I was diagnosed with MULTIPLE MYELOMA in 2018. I was treated aggressively right away. After chemo for a year, I had a BMT, with myself as the donor, in 2019. My numbers were great for a few months, and then started climbing again. I contracted COVID TWICE and it seems that it rendered my BMT useless! I was back on chemo after chemo. When my Light chains got down to around 400, they suggested a Car T Cell transplant. I did this in 2024. It was a much easier transplant than the BMT. ( (Before I actually had the Car T though, I had COVID twice, pneumonia once, bi lateral PE,and numerous, severe chest colds)
The Car T was a success! My myeloma was/is in remission! However, because of all the damage, scar tissue, I now have lung disease! I finally had to quit working in June of 2025, and go on oxygen 24/7.
Even though I’ve been through a lot, I feel God has watched over me and kept me uplifted. I think attitude is everything!

@katgob
So good to hear from you! It’s always good to hear about other people’s healing journey for perspective. I am inspired by you and others particularly those who have gone through so much more than me including multiple cancers OMG how do you do it, what grit and determination, I’m humbled, kudos! As a scientist I am so incredibly aware of how much the brain/mind has a role in healing. We can have a positive outlook and make good chemistry in the body or make bad chemistry. This is not to be underestimated. All of you individuals on this sight serve as medicine, yes unfortunately we need the actual medicine but this site serves as medicine for the brain. My brain thanks you for this medicine! Ha ha so important on this healing journey. You know that I have a passion for hiking, once available to me again thanks to my donor and so so many others, well a famous Sherpa once said “the mind gives up before the body”. GRATEFUL to all for your help, stay strong, we can all rise together 🙏🥾

Good Saturday all.
No new people so this is to all who have been posting. I think it is good day for me to update. My last appointment was the 24th, prior was Nov 19. I had not seen my NP Hannah, and she was who i saw. Wonderful. She loves my curly hair and has been wonderful since the last 3 months after transplant. Returning from her 1st baby! She is also 6 months pregnant!! I said please come back. My last favorite NP never came back!! Honestly though she is so excited my blood numbers are all in beautiful ranges. I mentioned to her that at 2 years almost i would love to write to my donor!!! I figure one more time.
Another fellow on this site spoke about Bone Marrow Biopsies and how one does not need them. It got me thinking how some people may never hear of treatments out there like a BMB. Their hospitals are not yet cutting edge and Doctors not trained to the degree research hospitals Drs are. I never thought twice about it. I heard it will show what condition your blood cells are in. I thought of my marrow as a window into how it all works. What else could I do that would give me this info? I would never have known to ask about a test like this. An odd Biopsy, but one that started my journey with hematology.
I do not go back for 3 months!! I just need to lose the 3 lbs i gained.

@katgob Hi Kat! Congrats on the great blood numbers!! Even though you’re not anticipating anything amiss, it’s still a relief to actually see the numbers holding steady! I’m hoping for the same news when I have my check-in with my local H/Oncol the end of March. He wanted to do labs twice per year, every 6 months. But it worked out such that I see him once per year, then see my BMT doctor at the 6 month mark. So I still get checked twice annually but once per doctor. My last one with the BMT doctor was the first time in 6 years that everything was perfect! Everything!! Whoo whoo. We were all shocked! 😂. So I’m really hoping it’s the same in another 2 months…
Aw, it’s rough when you lose some favorite nurses or NPs, isn’t it? You become like family with such frequent appointments. I have 2 nurses with whom I remained friends since my AML days. We try to get out to dinner a couple times a year to catch up.
You mentioned writing to your donor again. I’ve tried several times to no avail. He continues to not respond to the my attempts to initiate contact. Kind of bummed about that because I’d love for him to know what an amazing gift he gave me. Though I know he owes me nothing, I owe him everything! Have you ever heard back from your donor?

Found this on the NBMT link page on Facebook. I highly recommend NBMT link as a great resource.
🧠 Coping with the Battlefield of the Mind on a BMT Journey
1. Understanding the Mental Battlefield
A bone marrow transplant is as much a psychological and emotional challenge as it is a medical one. Survivors often describe it as a “battle of endurance—both in body and mind.”
Fear, isolation, and uncertainty are common, especially during long hospital stays or when post-transplant complications like GVHD arise.
According to the National Comprehensive Cancer Network (NCCN) Distress Management Guidelines, cancer patients should be routinely screened for emotional distress, as it can impact recovery, adherence to treatment, and overall quality of life.
The American Society for Transplantation and Cellular Therapy (ASTCT) emphasizes a mind-body approach—recognizing that mental health directly affects immune recovery and physical resilience.
“Your mind will try to convince you that you can’t.
Your spirit must whisper back: ‘I already am.’”
2. Common Mental Health Challenges After BMT
Emotional Challenge What It Feels Like Professional Insight
Anxiety Fear of relapse, infections, or symptoms returning Practice grounding techniques, mindfulness, or CBT-based coping to reduce rumination
Depression / Hopelessness Feeling like life is on hold or changed beyond recognition NCCN recommends early mental health referral and antidepressant therapy when appropriate
Identity Loss Feeling “different” from who you were before transplant Rebuilding identity is a gradual process; working with psycho-oncology or survivorship programs can help
Cognitive Fatigue (“Chemo Brain”) Difficulty focusing, remembering, or multitasking Use pacing, journaling, and cognitive exercises; occupational therapy can help retrain habits
3. Professional Coping Strategies
🩺 Evidence-Based Approaches:
Cognitive Behavioral Therapy (CBT): Helps challenge catastrophic thoughts (“What if it comes back?”) and replace them with balanced perspectives.
Mindfulness-Based Stress Reduction (MBSR): Studies show it can reduce anxiety, fatigue, and insomnia in post-transplant survivors.
Support Groups: The Be The Match Patient Support Center and Leukemia & Lymphoma Society (LLS) provide survivor and caregiver peer programs.
Physical Activity: Even light stretching or walking helps regulate mood and sleep, as supported by NCCN Survivorship Guidelines.
🧩 Practical Tips:
Set small, daily goals to restore a sense of purpose.
Journal about fears and progress—it helps “de-clutter” emotional overwhelm.
Allow yourself to grieve your old normal while still making room for new meaning.
4. Survivor Reflections
“During transplant, I fought the urge to quit every single day. But I realized I didn’t need to win every battle—just keep showing up.”
— BMT Survivor, Memorial Sloan Kettering
“I had to stop asking, ‘When will I be me again?’ and start saying, ‘This version of me is still worthy, still fighting.’”
— GVHD Survivor, Johns Hopkins
“The hardest part wasn’t the pain. It was silencing the fear that this would be my whole story. Turns out, it was just the hardest chapter.”
— Allogeneic Transplant Survivor, Stanford
5. Spiritual & Meaning-Based Coping
For many, faith, nature, or a sense of purpose becomes a stabilizing force.
Research on meaning-centered therapy (Memorial Sloan Kettering) shows improved emotional well-being when patients reconnect with values, relationships, and legacy.
Even small rituals—lighting a candle, prayer, listening to music—can help anchor the mind in hope.
“Healing doesn’t mean the damage never existed. It means it no longer controls your life.”
6. When to Seek Professional Help
Seek help if you experience:
Persistent sadness or anxiety lasting more than two weeks
Thoughts of self-harm or wishing you wouldn’t wake up
Inability to sleep, eat, or enjoy activities you once liked
Emotional withdrawal or hopelessness
Psychologists, social workers, and oncology therapists are trained to support these challenges. Many major transplant centers (like MSK, Mayo Clinic, and Dana-Farber) have psycho-oncology programs.
7. Closing Reflections: The Mind as a Healing Partner
Your mind is not your enemy—it’s a powerful ally learning how to survive what your body has endured.
Healing after BMT is a process of reclaiming mental strength one thought, one breath, one small victory at a time.
“The mind is a battlefield, yes. But it’s also the birthplace of resilience.”

@loribmt
Thank you for this message. I may message my NP to keep me posted. I had not reached out to my donor yet. First tomorrow to the department that initiated my first message.
I hope your numbers are steady and good too. But as we both know, our medical teams are ready always. So are our attitudes and willingness to see life as it comes will keep us going forward. Blessed to be alive.
Also, my NP said to write. Tell him he gave you your life.
I hope you have a wonderful day.

17 months post allo SCT and my husband is dealing with chronic GVHD (apparently relatively mild). I wanted to share the new resource we have found:
https://bmtinfonet.org/
For all things transplant.