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Immunotherapy for Stage 4 Bladder Cancer - Seeking Pals for my Journey with This Treatment

I was diagnosed with "transitional cell carcinoma" (bladder cancer) in early 2019. It was in my kidney, and the right kidney had to be removed, along with the bladder cuff and several lymph nodes. Although chemo was recommended, after the surgery, I opted for a vegan anti-cancer diet instead. I adhered to the diet for about ten months, but gradually began slipping off. 23 months after my surgery a CT scan found that the cancer had spread to a lymph node near the surgery site. Again, I opted for no chemo, mainly because my remaining kidney has left me with Stage 3 kidney disease - I want very much to avoid dialysis, it at all possible. I was, however, eligible for a new "immunotherapy" treatment - Keytruda. I'd be very interested in corresponding with other bladder cancer patients who are fighting their cancer with immunotherapy. I'm feeling rather alone in this treatment. Thanks.

  1. I have stage 2 bc and I opted for chemo (Cisplastin) and 36 rounds of radiation. I was able to enroll in a trial using Tecentriq for 9 infusions every three weeks. I will undergo a third biopsy on Monday to look for a reoccurrence. The chemo was tough.....really tough. I understand your reluctance. Let’s hope our immunotherapy works. Keep up the good work!

    1. - very curious how you managed radiation. My dad is entering 5th week of a 6 week course and struggling. He is also doing Tecentriq monthly.

    2. first 20 radiation treatments were totally unremarkable. The last 16 or so left me tired and the tissues were increasingly irritated. I was glad to be done but if it works it’s a small inconvenience. I have no adverse reactions to Tecentriq. I have 3 more treatments and hopefully done. Radiation can be challenging for sure. Let me know if you have any other questions.

  2. Hi Chris!
    I want to say I am in awe of your lifestyle changes. I know how overwhelming this journey can be. Keytruda is a common immunotherapy around here. Try searching it in the search box, but I really want to share this article from another advocate highlighting her experience with Keytruda.

    Of course, everyone's experience is different but it could help add some perspective.
    How are you doing as a whole? Also how was the diet? I've dabbled with veganism myself so super interested in learning more!

    1. Hi, Jada -- I have to be honest and say that I am no longer on a strictly vegan diet -- now it's more like a "Mediterranean Diet". I include a couple of small servings of fish, chicken or seafood weekly; still use regular mayonnaise and sour cream in moderation because I haven't found suitable vegan substitutes; and I eat a moderate amount of cheese (just can't give it up!), but no other dairy products (no dairy milk or yogurt). I still eat primarily fruits, vegetables and grains, and really just add small servings of meat/cheese/eggs or fish/seafood; and I avoid sweets and foods without nutritional value. I believe that veganism is the most healthy diet of all, but it's a huge change in lifestyle and was too restrictive for me long-term. The 18 months that I remained vegan helped me learn to love fresh fruits and veges, however. That was an enormous benefit to me.

      Thanks for the link to the article. My experience with immunotherapy (Keytruda) so far has been very different from what I read in the article. The only side-effects I've had so far are noticeable fatigue, a stiff neck (?), tinnitus (a chronic background noise in my head - but I've gotten used to it) and some increased joint pain in my arthritic joints. None of these side-effects are unbearable. I feel very lucky. After getting my 2nd Covid shot I had a 2-day bout of diarrhea -- hard to say if the immunotherapy had anything to do with that.

    2. Thanks for sharing this! I really feel like though I LOVE vegan and plant-based diets it's just kind of hard to sustain. Happy to hear I'm not alone! I will have to look more into the Mediterranean diet. I love anything that allows me to have seafood haha.

      So happy to hear that the side effects have been minimal! It's always hard to guess what side effects may come about. Have you shared the Tinnitus with your doctor? I ask because recently another community member actually wrote how her tinnitus went unchecked and had bad results. Sorry not to be scary but I thought it was good info. I'll share the article (I've learned so much in the last few months).

      How have you been lately?

  3. - Chris - I am not in your situation but certainly am available to help out anyone who I can. I went to RC/IC directly from a T1HG diagnosis. I am in contact with someone who is taking Keytruda as a treatment and has for several months. So far things are going well and I certainly hope you also have a positive outcome. Please keep us updated on your status. My best to you. Linda ( moderator, author, team member)

    1. Thanks for the input Linda. Please see my response to Jada above. This is such a great forum. I'm so glad to be a part of it.

  4. Chris, Hope you are doing good. I was diagnosed with stage 4 of the same type of cancer in January 2021. Did 5 rounds of chemo. It was a rough ride and it was hard on the kidneys so I would say you made the right choice. I have had 3 treatments of Keytruda and so far it has been very well tolerated. Just some ringing in the ears and I still get tired easy. 100% better than chemo. I have another scan in about 6 weeks will let you know how it goes. If you haven't started immunotherapy yet I would say go for it. Anything is better than the alternative. If you have started then good for you. And good luck with treatment.

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