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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 hours ago | Replies (577)Comment receiving replies
@lisal64 Hi Lisa! It’s great to have you in the BMT/SCT discussion! Thank you for sharing your transplant story. There are so many underlying diseases that can warrant a SCT that we don’t always cross paths until the transplant. I thought it would be a great idea to bring us all together and would like to really build this group to discuss a wide array of the issues we face.
I read through the earlier posts of your diagnosis with Multiple Myeloma. Having a diagnosis out of the blue like that really pulls the rug right out from under, doesn’t it? Life changes in an instant. It sounds like you have a marvelous support system with your sweet husband and family! Did I see you have 12 grandchildren? What joy they bring to your family!! I’m sure it’s frustrating not to see them as often as you’d like. But knowing they’re waiting for Grandma is a driving force to keep going. Hopefully this virus gets under control soon so we can all resume some family time and ‘normal’ actives. I miss hugs!!
It’s wonderful you were able to have your treatments and SCT at Mayo and live so close. They really set the standard for health care. Being ‘Mayo-naised” spoils us for anywhere else. 🙂 Did you have a autologous transplant? So after your bone marrow was cleared with chemo you were able to use your own stem cells to replenish the marrow. It’s a plus that you could avoid any graft vs host issues. You mentioned being on maintenance chemo. How long will you remain on this regimen? If your BMX in June is clear will you be able to stop those meds?
I’m sorry you’re still having bone pain and muscle spasms when you’re active. Is there any physical therapy you can do to help ease your muscle spasms and speed recovery? Not knowing much about MM I quickly did a little reading and those symptoms are associated with the disease. Do your doctors feel these symptoms will subside over time now that you’ve had the transplant? And don’t feel bad about napping. The hardest thing I had to learn of the past 2 years was to “listen to your body” which was drilled into me over and over by my BMT team! LOL. If you’re tired, rest!! Not always easy for an RN, mom/grandmom. I’m sure you’re used to being active and non-stop. It’s ok to have life happen on your time now! Are you still working?
Having a new puppy in the house I’m sure keeps you plenty active! Hopefully soon enough your grandkids can join the mix.
Would love to visit more with you so pop in any time! Our rebirth days are 18 days apart in June! We can have virtual cake and high fives! LOL.
Wishing you continued health and a clean BMX!! Lori.
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Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!