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Discussionileus after radical cystectomy
Bladder Cancer | Last Active: 2 days ago | Replies (11)Comment receiving replies
Replies to "Thank you for sharing you experience with us. So many difficult decisions to make. Met with..."
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@ronniek (I think this question is to me?)
I did not have treatment prior to the surgery and decided after my second opinion in NY. My original NJ surgeon would not make a recommendation, the original medical oncologist quoted the standard of care which was chemo first but openly expressed doubts about it working because of what they knew about the tumor! He focused more on “how tough it was going to be”. Very, Very different experience @Mount Sinai 😊❤️. I started chemo with Gemcitibine and Cisplatin about 5weeks after very successful surgery . The pathology showed it was really stage 3 , not 2. The treatments during week 1 of every cycle were about 6 hours long and I would sleep through most of it. Week 2 of every cycle was much shorter and just Gemcitibine (I think) The actual infusion s took about 30 minutes each but there is a lot of iv hydration to flush the kidneys. My medical oncologist said I would probably feel like I had the flu. I felt pretty good after treatment but nausea and somewhat unpredictable vomiting usually started 2-3 days later. Some good coaching on how to use the prescribed Zofran really helped . Minor, very infrequent diarrhea, moderate to extreme fatigue, some loss of appetite or weird tastes and hair loss also. My care team said I tolerated the treatment really well. The hardest thing for me to deal with was when I started getting blood clots in my arms sound cycle 4. All were in minor veins and not life threatening but they hurt and I couldn’t sleep again . Infusion sessions became really tough for me as the really great nurses tried to find a good vein for the IV. My anxiety would go through the roof . I had a full response (based on Signatera and scans ) after 4 cycles and completed almost 6 cycles when we stopped because of the continuing clots. I needed treatment again 1 year later when Signatera detected CTDna positive. This time I asked for a port which has made getting treatment almost a pleasure if that is possible😊 Many thanks for your wishes. I wish you the best as well.
Also, I didn’t use the service but not sure if you are aware that BCAN offers a survivor to survivor service where they will match you with someone has who has been in your situation. Their website has also been refreshed and is pretty easy to use. Here’s a link
https://bcan.org/find-support/survivor-to-survivor/