Cystectomy for muscle‐invasive bladder cancer (MIBC), now Keytruda

Posted by jowilliams1 @jowilliams1, Dec 6 3:32pm

I recently had a RC and one node and a positive margin was found. It is suggested that I take Keytruda for 1 year of immunotherapy. I'm curious if anyone has done a clinical trial though and what his/ her experience was with it. Was it a positive one?

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

moose63 | @moose63 | Dec 7 8:56am

You may have seen my other posts, but just in case you haven’t, I suggest you check them out. I was on Keytruda for two years and my cancer is now in remission. This was after I was told I might have just months to live. Thanks be to God and the doctor He sent me to.

jowilliams1 | @jowilliams1 | Dec 7 9:36am

That's so encouraging. Thank you. All of the possible side effects of Keytruda have me a bit concerned. I don't want to trade one health problem for another. I see that you have a neobladder. I'm four weeks post op with mine. It's a lot to mentally process. They want me to start immunotherapy in three weeks but mentioned clinical trials as well if I'm interested. My cancer is high grade.

Did you do immunotherapy immediately after your surgery or did they appear to get all of the cancer at that point? I hope you don't mind me asking.

Colleen Young, Connect Director | @colleenyoung | Dec 7 6:13pm

In reply to @jowilliams1 "That's so encouraging. Thank you. All of the possible side effects of Keytruda have me a..." + (show)

@jowilliams1, I add my welcome. I'm tagging @moose63 to make sure they see your questions.

You may also be interested in these Keytruda related discussions:
- Keytruda (urethral cancer): What's your experience?
https://connect.mayoclinic.org/discussion/keytruda-6/
See all: https://connect.mayoclinic.org/group/bladder-cancer/?search=keytruda&index=discussions

How is recovery going from surgery?

jowilliams1 | @jowilliams1 | Dec 7 7:00pm

In reply to @colleenyoung "@jowilliams1, I add my welcome. I'm tagging @moose63 to make sure they see your questions. You..." + (show)

Thank you. Surgery was 8.5 hours long (with a total hysterectomy as well). It has been a rough few weeks but things are definitely getting better. I know the neobladder will take patience for the next several months which I was well prepared for. Unfortunately I wasn’t prepared for a pathology report that showed unfavorable results. I know it could be worse but I'm very anxious now about what lies ahead. I'm only six months into this since diagnosis and between chemo and surgery i feel like i need a break already.

moose63 | @moose63 | Dec 8 8:04am

In reply to @jowilliams1 "That's so encouraging. Thank you. All of the possible side effects of Keytruda have me a..." + (show)

I didn’t have immunotherapy after bladder removal. In hindsight I wish I would have. My cancer returned in some lymph nodes about one year later. I had chemotherapy with two different drugs for four months without any positive results. Went on the immunotherapy(Keytruda) then for two years. Only side effect I have had is dry mouth. Now six months with no sign of the cancer. Probably not cancer free, but my doctor is very opportunistic that the cancer may not show up for one year or longer. Praying that you will become cancer free.

jowilliams1 | @jowilliams1 | Dec 8 11:11am

Thank you so much. All the best to you. This is a hard road to travel for all of us. My prayers are with you as well.

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