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

@alive wow. I do feel he is cancer free at this point. But you just never know. He still has a lot of issues from it all. Low sodium which he takes meds for and a fungus in his lungs which he also takes meds for. But the worst thing for him is he has Parkinson’s disease which he has had for almost 10 years and that is acting up more these days. Doesn’t seem right that he got two issues. But he has been very positive and works out as much as he can. So we forge on with this new life he has been given. Hopefully he can get to 10 years like you. That is remarkable and so pleased to hear it. God bless you.

@jrwilli1 It must be very rough for your husband and you to be dealing with two very serious diseases simultaneously. I was diagnosed with AML when I was completely healthy otherwise and dealing with just AML was overwhelming!

Wishing your husband many more SCT anniversaries!

@alive I’m just thankful that they allowed him to even have the bone marrow transplant. The chemo did a real number on him but with a lot of PT help she got him ready. Great team work

@jrwilli1
I hope your husband gets as good care for the Parkinsons as he has for the BMT. No fun for sure.
My BMT reunion day was very nice. I met a fellow with MDS that was high. Bloody gums were his only side effect which later he realized was clue as it was not normal. I met 4 from COH who make the plans for each of our transplants. Then from the Be a Match type organization in Germany that COH seems to favor. I told them my donor was from what was Be a Match. They knew the new name. Another acronym. Many others. Entertainment ended with Will Farrell. Dr. Forman who runs the program knows many famous folks around LA. Will Farrell says he is a wonderful stand in for Steven Spielberg when not being a DR. The first transplant patient was there; He was honored last year as he also became nurse at COH for his career. I also got to thank DR. Malik and tell him the research study for GVHD worked for me. He was so happy it worked as intended. He said you look great!!!

For me, my sister is in the hospital with a collapsed lung. She still has troubles with her intestines, and so much of this began long ago with stomach problems, then ovarian cancer. She made choices on care that did not pan out. Today she spoke to me. I got to tell her i love her, read my sister's text of love to her as she was in her hospital bed with a lifesaving breathing machine. Yesterday i made the decision to stop by. Her husband filled me in that he worried she was giving up. CAREGIVER FATIGUE. I stayed a few hours last night, today a few more. I said what her husband says, your grandkids need grandma and i said we need your beautiful crafty self. It is not time for your talented self to give up. She said i am not giving up. I was there earlier and i chatted it up with the nurse, who was very good. My sister got a catheter today. I think that helps relieve the stress of a bed pan, as my sister is not getting up for any reason. Personally, I wish oh wish she had a space like this. She keeps things to herself. I made sure to tell her i am coming by every day until she is released. I did what i did with my mom, do not leave until i say i love you. Sister you are loved.

@katgob we also used be a match. How interesting in your meetings. We only used to see fellow patients in the waiting rooms and get to talk there quickly. Wow my sister is in the hospital as well they removed most of a brain tumor which is believed to be cancer but she lives 3 hrs away so I’m trying to get to see her as much as I can. Please we need to hug and tell family we love them as much as possible. Hugs to you and your sister. Aren’t they grand. 🙏❤️

My sister is being released from the hospital as the head "Hospitalist said nothing more can be done for her. They are a treating place, not a research and find a cure place. Her stomach issues stem from the original ovarian cancer. At the moment, her lungs were cleared. BUT her cancer cannot be treated at this time per the City of Hope oncologist as she is too weak. She has not eaten solid food. Today our brother-in-law hopes to find about home health, not the hospice they want and what insurance will cover. So far it has covered the hospital dollars.
I will ask my brother-in-law about the genetic portion of my cancer. My sister may never had completed it. I want her daughter/ and or son to be aware. I spoke with my younger sister in NY, she feels blind sighted. She got to talk to my sister a number of times. Our sister never let her know where she was at with this cancer. Not the whole truth at any point in time.
This is a place i did not expect to be at so soon. My sister tried helping me through my cancer, she finished cutting my hair super short after my 1st chemo, so i would not have clumps. Cancer was not something i talked to her about, as i saw it if you do not talk about it, it does not exist. She did whisper to me the first time she was hospitalized over a month ago that "she wished she did what i did". At that point, i had no idea her actual state of health.
Even today i need to remember that there is nothing i could say or do to change her journey. I listened to her husband ask necessary questions about her care as she will be released most likely Tuesday. Her answer was she did not want to talk about it. He asked so i could hear as he said it is the same when it is her and him. He asked me if she seems" close to death?". I said i agree with you she will never be the same, but it seems if things work at home, she could be here a while.
This journey is a day at a time.

Aw, @katgob This is very sad news about your sister. Sometimes, in spite of best efforts there is nothing more than can be done which would be helpful. There can be a fine line between heroic efforts and realistic efforts for the comfort and quality of remaining life for cancer patients.
I am so sorry it has come to this point for your sister.

I think you are wise to pursue the genetics of your family. With the cancer history of you and your sister it would be important for your other siblings and their offspring to have any information that there is a potential for a familial link.

These journeys are personal and some people choose not to tell family and friends. That makes the discovery very shocking to those left out of the loop. I hope there is nothing in the genetics but it would be helpful to find out so that any other siblings and their children could be aware.
It sounds like your younger sister has already been blind-sided by the lack of information about this cancer journey of another sibling. I’m sure that has come as a shock to her!

I hope your sister and her husband are able to receive the hospice or home care of her preference. And I also hope that she will open up to you and her family a little more. If there are things to be said or wishes to be know, now is the time to share them with her family.
Sending you a gentle hug, Kat. Thinking of you and your sister…

July 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!

@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!

Good 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?