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

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@loribmt

I’m a little confused. Are you saying that 2 of your 3 sisters are against you having a stem cell transplant which could ultimately extend your life? I don’t mean to be snarky but why are they making life altering decisions for you? This is between you and your husband (your caregiver) with the final declaration being yours!
From my understanding, with your health diagnosis, is that you fall into a higher category of relapse. You’re already seeing that happen with the current progression of your disease. By your sister’s suggesting you shouldn’t follow through with a transplant, it’s almost like they’re willing to throw in the towel. But I see you as a fighter who wants to enjoy her retirement with her husband! And if this is a way to increase that quality of life and life expectancy then this is what you’ll do. It’s just a little detour on the journey of the rest of your life.

I’m curious though about why they feel this way. Risk? Well, life holds no guarantees even with a transplant but you know for certain that this remission you’re trying to achieve won’t last. With a transplant you’ll have a greater chance of longevity. Again, with using your own cells you don’t have the risk of graft vs host to deal with so recovery is quicker and so is your hospital stay. You’re in great physical shape and there were no Red Flags for the team at Mayo.
I think in this case knowledge is power. So please, from now on, YOU take charge of these decisions along with your husband and doctors. If you have this done at Mayo, you’ll be part of your own team. You make decisions with your doctor and team. You’ll have educational classes, and pre-transplant testing all designed to make your experience as successful as possible.
Your sisters should be thrilled you have this option in front of you, right? What do you think?

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Replies to "I’m a little confused. Are you saying that 2 of your 3 sisters are against you..."

I think they are supportive now but think they read some of the scarier accounts and thought too chancy. One said I did not understand that the Chemo for the transplant was way worse than my weekly protocolS I said I knew that but perhaps only two days and was sure I could tolerate that. Some things on the internet are older and so many are done now that am sure I will prevail. The Mayo doctor did give me the odds but I am a gambler and despite our run of bad luck with this and his car, I think they are still well in my favor.,I will be sharing your roommate’s experience…it might not be mine but then it could be! I will say that no matter what I have taken di far no nausea and a good appetite so will go with that scenario! I am determined to have one if I possibly can! I am so thankful that Mayo seems to think it can happen. Of course way more positive one day 1 before my PET came back. He does seem to think the Revlimid will come through! My sister went with me to my last/first back with her this year. Her husband died two years ago from Pancreatic cancer. He also had diabetes and Parkinson’s, the latter not diagnosed for three years! He had freezing but not the usual symptoms. I do think that when I went into remission they thought I’d escaped a wirse fate and I would have a few years. Sadly it was just the opposite! Had I gone to z Mayo then they would have found it right away since had issues only weeks later but declared as returned on 12/27! Why it took 2.5 months is still beyond me!

It is not their decision. Only mine and I cannot wait!!! Wish it were tomorrow!!!