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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 days ago | Replies (549)Comment receiving replies
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!
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Wow, Lisa! If I could still do cartwheels and backflips without suffering serious bodily injuries, I’d be celebrating your joy!! 😍 I’m so happy you’ve responded that well to the treatments. It’s fantastic news and you’re right, those positive milestones are just the nudge to uplift the spirts enough to be more tolerant to the tiredness and other little annoyances.
I can so relate to not wanting to rock the boat with changing med doses! I’m going through the same thing right now with a tacrolimus taper. I’ve been in this wonderful holding pattern of bliss for almost a year. I don’t want to taper off!! LOL The last time ‘we’ tried, I ended up with some pretty big GvHD issues. Took a year to get over those. So now, I’m starting that same taper and trying to be optimist!! If I can get off the tacro, then I can stop all 5 of the other meds that I have to take because of it.
Though, yesterday, at the 2 week point with taper, I started feeling a familiar jolt of pain in my wrist tendons. That’s where this whole misadventure started about 2 years ago. Finger’s crossed it doesn’t progress like last time. I’m not going to give it much thought until it actually happens. Though of course it’s in the back of my mind.
I know you’re going through that same level of anxiety with reducing your meds which have worked fabulously this past year for you. However, if you can get the dosage reduced without any issues, maybe it will bring some relief from the tiredness you’d experiencing. So it’s worth a shot. You’re being monitored very closely and obviously have a great transplant team. They’re watching your back. So if you do have issues, they’ll be on it and adjust accordingly. I let my team worry about this stuff. We have enough other things on our plates to keep our brains fed, right? Haha.
Ugh, the Covid surge again is troublesome and frustrating. Just when life was getting a little more back to normal with your kids and grandkids getting to visit. But oh my gosh…little Bear is hardly little!! Sounds like a huge furball of love!! I miss having a dog in the house!! But it’s not time yet. Fortunately we have 4 young families in our neigh hood and each one has gotten a puppy in the past few months!! So you can imagine there are a lot of belly rubs given anytime we walk past.
It was great to hear from you! Drop by any time. Always fun to chat. ☺️