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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: Jun 18 8:57pm | Replies (402)Comment receiving replies
Lori,
Thank you for this message. You eased my mind. I figured since I have not had any real GVHD symptoms, once i do, I would let my team know as soon as I know. I was reading over possible side effects and most seem like ones that may come slowly. I had these red spots all over my arms and chest, that an RN said were from the chemo. They went away in the week. That was with my breast cancer.
All of what you said I needed to hear. The part that I need some gvhd so my bodies new cells can stand up and fight. I am reminded as I read your post that what might and likely will happen, has help to handle with a phone call. My Drs. have listened. This Tuesday I will ask about gvhd. How would they like to be notified about new symptoms.
I wrote in my last post of my last cancer from 32 years ago. Ha! 2021. 3 years ago, this July I was diagnosed.
I walked 7000, 3.6 miles.
One of my caregivers was with a lot of people today. I went for a walk, she took a shower and had dinner. I came back and went in my room. They shower and change their clothes and lysol and all that to keep germs away when either one goes out.
Me, I look forward to hearing from more people. I find hope and possibilities as I read your posts.
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Mornin’ Katgob, Lookit you go! I love that you’re walking so much. It really helps speed your recovery along, I think. I walked all the time too (still do) and it really made me feel so much more alive and vital everyday.
A little more about gvhd (graft vs host disease). Before our stem cell transplants, we have our own immune system, with our original factory installed cells. That immune system’s job is to seek out invading cells such as cancer, bacteria, viruses and destroy them. It’s basically the driving force behind our good health.
When we have a bone marrow/stem cell transplant, we get someone else’s immune system. It doesn’t recognize our body at all! It looks at us (the host) as the invader and reacts accordingly. The new immune cells will cruise around the body looking for trouble…sometimes creating their own.
Our doctors do their best to find donors most closely matching to our proteins or HLA markers. Even so there can be some power struggles going on between us (host) and donor cells, until those two learn to play well together!
Eventually, our new cells start recognizing our proteins and adapting to the new environment where the two entities can play together amicably. It can take some time for the adaptation…weeks, months, or in my case it took about 2.5 years. As we joked in our house, despite my perfect donor match “the force is strong with this one”. But the transplant worked and has kept me very healthy.
If there are symptoms of gvhd within the first 100 days it’s generally classified as acute gvhd. After that it gains a ‘chronic’ status. Again, don’t live in fear of developing some gvhd symptoms. For the first 3 months I had no symptoms at all…which I thought was great! However, my doctor was getting concerned that there were no signs. We need some gvhd!
Signs to look for with acute gvhd, will be rashes, particularly on your back or stomach, arms. Nausea, vomiting, cramps.
If any changes occur then let your team know.
I’m so proud of how you’re breezing through this, Katgob, from jumping through hoops to find a support team post transplant to how well you adapt and roll to the changes in your life over the past months. You’re a force! Have lovely day!