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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: 15 hours ago | Replies (633)Comment receiving replies
Hi all, I have been out and about at a retreat this weekend i attend yearly.
I had my check in a week ago and the Dr. said it was time to set up the yearly follow-ups. Pulmonary, Chest CT Scan, Pap Smear, echo, more blood panels not usually done and a couple more. Most to be done April 4th.
I had my breast ultrasound and no findings after my Feb 2022 tumor removal so that was a beautiful Friday March 14t morning result as i then headed to our local mountains for my weekend. Putting on chains and snow that made that drive more fun.
Since my transplant, that was my first trip out with 160 people for 2 days since April 9th, 2024. Wow.
My blood numbers were still very good although i did not drink enough water this last weekend so back to my usual once i got home Sunday. I want to add something. For my breast cancer follow-up i had a brand-new PA. The Dr was new to me 6 months ago. I realized this weekend I am going to have my yearly follow-ups with my prior MO who moved to the hospital my breast surgeon is at. This new PA was very kind and very knowledgeable, but she knew nothing about me. She had no idea i am at the 1-year follow-up with no active treatment necessary. She did not know until i said it that a bone marrow transplant is what i am being treated for now. Soon to move from active treatment to possibly 3 or so months apart for visits. My BMB is on April 4th too. My scheduler got my day filled so i only have one day for most tests.
What i did hear the PA say that was right on was that i need to go back to routine with my primary care physician. I only had gone there twice after i found my breast mass and was referred to COH. She said COH is a treatment hospital. For a cold and other care not part of my BMT care does not require the specialized care. That made perfect sense. AS my next breast ultrasound is not for another year, i have plenty of time to make the Physican connection and make contact with my prior Medical Oncologist who treated me through my 1st cancer.
I am a bone marrow transplant patient for life. That treatment will never change. COH i will stay.
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Good morning, Miss Kat! I seem to recall last year around this time, you were concerned you would miss out on future retreats like the one you attended this weekend!! I love seeing posts like yours that show life can return to normalcy after having a BMT. It just takes time and patience. Your first Re-birthday is right around the corner and you’ve have been an exemplary patient for your BMT team.
Going back into mainstream medicine for routine care was an eye opener to me. As BMT patients we get spoiled with our dedicated devotion with our BMT teams and oncology teams. I’m finding, not so much with my PCP. He gets a bit prickly when he has to defer to requests/orders from my transplant doctor. My local oncologist works really well with my Mayo team…no issues there at all. But my PCP is another story.
Until about year 3 post-transplant, my local oncologist was my primary care physician but I was still having 3 month followups at Mayo. So basically anything I needed was done through Mayo. When I finally went to the primary care clinic where my family has gone for years, I had a new doctor, to me. I introduced myself and let him know I had a BMT and explained that he would be part of my care team. My ‘boots on the ground’ locally but that he may have to defer to my transplant doctor from time to time. I asked if he’d be ok with that. I realize this puts him in an awkward position of not necessarily being ‘primary’. But our primary doctors need to be team players. So when my transplant doctor put in a direct order for a medication that my primary doctor didn’t want me to take, my primary got prickly with me.
We had a long face to face talk and hoped we reached a truce after he said he now understood better why I was given the medication and he’d work together in the future.
Well, that was last April. Since then I’ve had 2 occasions where I’ve contacted that office for assistance and there was no response at the time until about 2 weeks later. That wasn’t helpful! 😅 I ended up both times calling my BMT NP and got immediate help.
I have annual PCP visit coming up in a couple weeks. I’ll see how this appt goes. If he’s still going to all Dr Crabby Pants, then I’ll opt for another clinician in the office.
It is comforting to know our BMT teams, in most clinics, are dedicated partners for life. We are forever changed with a BMT but we can have full and much appreciated 2nd lives ahead of us. We just need some special TLC from time to time.
I’m so happy for you, Kat, that this year has been such a success story. Wishing you continued wellness!