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

So far 4 days with no side effects except very tired. No rash so far. Hope sleep tonight. Have been doing okay there but last night not so much. Also the fact that it has attacked my rib cage during the weeks if under medication also impacts. I hope it really heals some in 6 weeks or so…I had no idea I had it for over a year with little damage so guess had no idea how much damage it could do. I finally see my original doctor on Thursday and hope I get some good news. I need to walk and get out. Hoping this doctor will work well with the Mayo doctor. Yes think any tests now will not be too much if a change. Maybe in 3 weeks a bit if improvement. I hope there is a good drug mix that will work fast. It was 5 months last time but guess likely longer. Wish not. Hope Revlimid jump starts things. This us such a horrible disease and I was more focused on my lack of immunity than realizing what it would could do with only basic maintenance. Going to Mayo finally made that point!

Hi@tml I’m so happy to hear you have all of this support around you. It’s really crummy though that this started happening right after you retired. My AML symptoms started the day after my 65th birthday. Doesn’t seem fair when we work so hard to stay healthy and expect to cruise into retirement without any obstacles. Fortunately, I did retire many years earlier so I had some great years before my turn with all the medical hoopla.
You sound like there’s a lot of positive things going on in your life that make it worth fighting for. I also love the symphony and theater. It’s just been ages now since I’ve been able to attend! Enjoy Carmen! It’s one of my favorite operas!

Your idea of not looking at test numbers until 3 weeks go by is pretty sound. What’s the old axiom? Ignorance is bliss? Sometimes it’s all we can do to get through the day. Adding anxiety by waiting for blood results can add fuel to the anxiety fire, I know that all too well.
How are you feeling after a couple days on the new medication? Any side effects?

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

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!

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?

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.

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?

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.

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.

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