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Such a great explanation from Lori. I just want to add that being a former nurse and generally inquisitive person, I usually would read all about the drugs and their side effects plus all the possible GVHD issues. However, someone (maybe Lori) encouraged m pentode to read all of that because it a feel overwhelmingly scary and most side effects won’t happen to you. For once I didn’t over research. The fact was I had Eosinophilic leukemia and needed a transplant so knowing every terrible potential problem wasn’t going to help me. The doctors follow you so closely and every medication you are on has a good reason. Certainly ask and know what medications you are on but don’t worry about all the potential problems because they may not happen and you’ll only stress yourself unnecessarily. And amazingly I have had no GVHD and no adverse side effects from the meds - and lol with a history of autoimmune disorders I have previously had many side effects and problems in my past so if I can have a good outcome anyone can. All the best to you.
Replies to "Such a great explanation from Lori. I just want to add that being a former nurse..."
Just to clarify my comment above -there is a typo - I was encouraged NOT to read about all the possible side effects and GVHD problems because it was just more to worry about. For once I listened and did not over research about potential problems - it helped a lot to not have all those worries about what may happen on my mind.
Thank you @deb19 and @loribmt - it’s hard not ingesting every possible study and source of information but you are right- sometimes it’s really not that helpful and trusting the process is the path. I had a video visit with the BMT physician today- I’m still on a holding pattern- could be for a while. He said I have few symptoms- and with my previous endometrial cancer (no chemo or radiation) from 4 + years ago I am a medium intermediate risk. I’m comfortable with this approach for now. I will be monitored. They did a HLA search and found 4 donors- one over 40 so ruled out. That’s a 10 out of 10 match. They will continue to monitor until we get closer to the BMT. I do appreciate all of the questions and answers and dialogue here. I’m not alone with all of you in this ‘Connection Room’. Thank you
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This is excellent advice. We’re all individuals, responding to medications differently and this really is a time when I don’t need to add more worry to an already very stressful situation. It’s good to be informed, but like you said, it can get very scary & what good does that do for you? In a meeting last week with the social worker, I complained about the booklet they gave me on SCT. I said it was alarming & could maybe make some people not want to get the transplant! I don’t think she appreciated my criticism, but hey….
Attitude is everything. And I feel strongly that a positive attitude helps us physically, mentally, emotionally & spiritually!