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DiscussionMy Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 3 hours ago | Replies (578)Comment receiving replies
Replies to "@lisal64 Hi Lisa, Thought I’d pop in today to see how you’re doing. It’s been a..."
Hi Lori! So sorry it has taken me this long to respond! I hope you are doing well. I have had a busy spring, and summer! My PET scan in April showed "response to treatment"! It was the best PET scan of the 5 that I have had, in 2 years! The lesions are still there, of course, but no progression! Then, in June, I had my 1 year check up after the BMB, bone study, bone density scan, and lab work. We recieved the great news that I am in Complete Response! The Pomalyst 4 mg maintenance has worked. So this makes it easier to accept the side effects of pain and fatigue, that I am still experiencing. My specialist at Mayo wants me to continue the maintenance for the next year, then recheck. He did mention that the dose is sometimes adjusted, but I am afraid to rock the boat just now. I have MM and regular labs, locally, tomorrow. And every 2 months, if no problems.
So we will see . I am still on Synthroid for Hypothyroidism, which was diagnosed in December. My Thyroid was fine prior to SCT. My biggest concern is that I still do not feel I can work yet. Everyone tells me not to rush that. I did talk to my pharmacist, about the pain and fatigue that will not let up. She did tell me that both are side effects of the Pomalyst, as well as MM. My husband and I recieved both of the Covid Vaccines, late April/ May, in between all of my regular re-vaccinations. I had no serious side effects from either, except a sore arm with both, and slight fever for 1 day, and swollen lymph glands, after second. I stopped my Pomalyst for 5 weeks, per my hematologist recommendations (1 week before 1st, through 1 week after second), so hopefully I have some protection. Our Covid numbers have sky rocketed over the last 3 weeks. So I am back on lockdown, for now. And very sad about it all, too. We did have the children and grandchildren here for Easter. That was such a great day! And I did see the children and grands much more, while the pandemic had calmed down. Our "puppy", Bear, will be a year old on the 16th! He weighs about 110 pounds now! He is so swee, and keeps us both entertained, and busy! Sorry for the long post! I will try to get on here a little more often. Take care and stay safe!