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

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.

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.

@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?

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.

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.

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.

My husband was diagnosed in October 2023 with stage IIIB MIBC. It had spread to his prostate and lymph nodes. We had chemo with Gemcitobine and cistplatin and then removal of bladder, prostate and lymph nodes. We had our 3 month follow up CT which showed an area of concern. We did a biopsy which came back negative. He was doing great with his neobladder for about 3 months then noticed an increase in mucous and then he had his first uti. He then woke up one morning unable to void. That’s when the issues started. After numerous phone calls to the physician we did another CT and now have another area of concern. We are scheduled for a biopsy and depending on results may need to start keytruda and padcev. Has anyone been through this treatment? If so would you share your experience?

@jaebug, that sounds like a lot of worry and you wait for answers. I'm tagging members like
@steenrl @sepdvm @davidpball @drzemke who may have related experiences to share.

Also see this discussion:
- Any EV-Pembro (enfortumab vedotin and pembrolizumab) experiences https://connect.mayoclinic.org/discussion/ev-pembro-combined-treatment-experiences/

Jaebug, has your husband had the CT scan in the meantime? What did you learn?

If you have access to my previous posts, suggest you review them. Yes I have experienced similar issues your husband is experiencing. I was treated with BSG and it didn’t help. Had bladder and prostate removed and cancer was invasive to one of my uterer’s. No cancer in prostate. Doctor felt all cancer was removed. Had scans every three months and one year later cancer showed up in a lymph node in my abdomen. Had chemotherapy for four months with no help. Went on Keytruda for two years. At that point scan showed no evidence of disease. Have now gone eight months with no evidence of disease. Doctor says he is sure that cancer is still in my body, but may not reoccur for year or years. If and or when it reoccurs, feels treatment will work for me. Hope this is helpful and encouraging.

@jaebug my husband has been through radical cystectomy/prostatectomy/neobladder surgery at Mayo Clinic in 12/21. He had many complications in the year after including abscess at site with neobladder leakage, ureter blockage and surgical repair, hydronephrosis necessitating nephrostomy tube, multiple hernias from incisions, and UTI. His final repair was almost a year ago in March, and the last year has been better. No cancer recurrence is a good thing. Prior to surgery he did spend several months on a trial of Keytruda alone, which was not successful in controlling his aggressive cancer. It affected his appetite so foods didn't taste right and caused him to be hypothyroid. Other than weight loss from diminished appetite the treatment was tolerable. I know they are having better success by combining this immunotherapy with other drugs now. Try not to be discouraged at the setbacks. These are just bumps in the road to be dealt with and move on. There is a future ahead where the road can smooth out and the new normal life returns. Be strong and be glad that new treatments are always becoming available/