← Return to Want to talk about Multiple Myeloma: Anyone else?

Discussion
Comment receiving replies
@loribmt

You have my deepest empathy. This has to be incredibly frustrating for you because you’d been in remission. I don’t know the reason your previous clinic said you weren’t a candidate for a bone marrow transplant, but it’s good you’ve gotten this 2nd opinion from Mayo in time to start a new aggressive plan of attack. None of the treatments are easy to get our blood cancers under control so I’m sorry you’re having to face this yet again.

I read through some of your past replies and see that you had some genetic mutations which caused the relapse to occur much sooner. These can happen randomly, you weren’t born with them. Some mutations caused my AML to be more complicated as well. These mutations basically trick our immune systems into no longer recognizing the cancer cells so they go crazy and proliferate out of control. The most defensive way to treat that is with a bone marrow transplant. The renewed immune system has a better chance to attack the cancer causing cells.
I don’t know your age, but at the time of my analogous (unrelated donor) transplant I was 65 years old. I’m now almost 3 years post transplant, fully in remission and back to 100% normal. So I truly hope you follow through with this and stick with the Mayo Clinic for your treatment. It does no good to dwell in the past. What’s done is done and now it’s time to only focus forward!

So, when you discuss this with your team at Mayo, they may still be able to send you back home for treatment of the MM with your current hematologist/oncologist for convenience. The local provider back home will also need to be part of your post transplant team when you need follow up routine blood work. Here’s what happened in my case. My cancer treatment center back home knew I’d need a BMT post AML treatment. I chose Mayo and arrangements were made. When I became a transplant candidate at Mayo Clinic, they then were the directing doctors for my treatment back home. Orders from Mayo were sent to my clinic back home to facilitate the further treatment I needed to get me ready for transplant. They worked together. Basically, Mayo became the ‘general contractor’ and my home clinic followed their direction for treatment until I was physically transferred back to Rochester for the transplant procedure. So whether or not your current clinic feels you’re a candidate or not, it’s not their concern. You can still receive treatment there for your MM and then return to Rochester for Mayo for your transplant.
Does this sound feasible to you?

Jump to this post


Replies to "You have my deepest empathy. This has to be incredibly frustrating for you because you’d been..."

Hope so. My home ‘clinic’ is a huge health system that does thousands of them including T cell. I really do not trust them anymore but likely stuck there. Guess I will know tomorrow what options I have. They totally ignored my symptoms and did tests for 2 months and then put me back in my same old treatments. Other than the myeloma all my other tests for liver, kidney, etc are fine. Was doing 20 mile bike trips and now I can hardly walk without a horrible pulse rate, out of breath. Part may be stress but not all and dread the flight back. I wish I could be more positive. Maybe tomorrow if a good plan.