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

Thank you!! Another fascinating read on stem cell transplant research. Instead of a mystery novel, let’s write a hopeful novel set in the near future where stem cell transplantation is a miracle cure for autoimmune diseases, but isn’t such a dreadful procedure as you’ve gone through!

I like your idea of a book! It would be wonderful thing if more people could benefit and it was an easy procedure. At this point a stem cell transplant is a serious commitment and used when there is no other option. An allogenic stem cell transplant is not a walk on the beach.☺️

Most of these applications aren’t full stem cell transplants. There’s a huge difference between stem cell treatments and stem cell/bone marrow transplants.
Stem cells can used to regenerate specific areas. I have a friend who had a serious wound which wouldn’t heal well. The damage was reversed with stem cell treatments.

I’ve also entertained writing a book with someone with 2 sets of DNA…which is what happens with a SCT. Perfect murder mystery. 😂. But I see it’s already been done. Any more ideas? 😅

I’m interested. Between the two of us we certainly have the lived experience! I’ll give it more thought and be in touch! 😁

I was diagnosed with stage 3 myeloma in 1992; had 3 SCTs my first decade; was then told no treatments remained “go to a hospice”; I refused; instead entered an out of town experimental drug clinical trial that saved my life; diagnosed with treatment-related Leukemia; had 4th SCT; in remission from both cancers the last decade, 30 years after 1992 myeloma. We welcome opportunities to virtually share our story; no fee, no sponsorship, no medical advice, just our strategies and experiences to try to give hope.

Wow. So happy you were able to have one . It is good you were at Mayo since it seems to be that anyone with a higher risk of relapse should be given the option. I know it is hard I’m the body but having had almost no remission and poor support after relapse, I feel I have no other good choices.

Thank you @tml. I really feel very fortunate to have gotten the transplant. In my case it was the only option if I didn’t want to be pushing up daisies from the underside. ☺️ It is not to be taken lightly however, it is not a walk on the beach by any means. The transplant itself comes with risks and potential longterm side effects. Especially when having an allogenic transplant, using an unrelated donors cells.

In your case, however, it’s a little easier on the system and requires much less hospitalization as you’d be using your own cells. It gets much less complicated when you’re not being infused with someone else’s DNA.
I wouldn’t let the prospect of the chemo scare you. For your autogenic transplant (your own cells) you’d most likely only have 1 or 2 infusions of chemo.
( With an allogenic there 5 days of chemo and sometimes full body radiation to make sure all the cancerous cells are cleared out, depending on the leukemia type and mutations.)
Your recovery time will also be shorter, again, because your body isn’t having to adapted to a foreign DNA. But for now, you’re not even near this bridge to cross. It’s up the road a bit. When that time comes, i’m with you every step of the way. ☺️. Will you have the transplant at Mayo?

Yes Hope so. And you are right. So much to get through first in hopes of having that chance. Still not sure if and when can get back to remission.

Let’s stay on the positive side of this! Remember, you were just at Mayo Clinic for a second opinion and they did not write you off! They feel you definitely have a chance to get this into remission and on with your life!
Our outlook can have a huge impact on the success of our treatments. Believe me, I know what it’s like to have bad news and the statistics were not in my favor. But here I am, through sheer will and determination. ☺️
So my advice to you is to start this new medication, get out and walk daily whether you feel like it or not. Find some happy, uplifting positive thing in each day to help motivate you through. Do anything to help you re-focus from your illness and restore some normal activities. Your disease doesn’t have to define you. 🙃

Tell me something about yourself. Do you have family and friends around you? What are your hobbies and things that bring you gratification? Do you enjoy walking, gardening, painting?

I have a wonderful husband and a son. My husband just finished shoveling our walk and driveway!!! Hard to get out now but spring soon I hope! I bought some daisies at the market yesterday to brighten my day. I retired in 2020 thinking I was in the best of health! I was a librarian so I do have lots of books and read a lot. I have three very supportive sisters but they do not live close. I have friends who do keep in touch but somehow have not felt like trying to get together with them. Was okay until the last 10 days before Mayo as think went downhill then.. The stress if dealing with decisions has taken it’s toll. I focused too much on my bad care as opposed to getting better care. I know I need to push that down and just hope all these drugs are working especially now the Revlimid. Not much of a gardener as we have lots of gluttonous deer who seem eat everything. Go to the symphony and have tickets for Carmen and need to use my flex play tickets. Have decided not to look at any test results until 3 weeks so I do not see any early still negative numbers!

My husband was an art teacher! Guess I could try to paint!!!