Any other females here with bladder cancer in their 50s?

Thanks Jo and I will let you know.

I hope everything goes well for you. Please let me know how you do! I'll keep you in my prayers for the 21st!!

I was in the hospital for 5 days after the surgery, so 6 days in all. They were great helping with any pain I had.

Hi Tanya.

That's very helpful information. I too will also have my uterus removed along with some other organs. I don't have the option for a Neo bladder (something about colitis in my colon) and the aggressive type of bladder cancer I have.

Can I ask how long was your stay in hospital and did you have good pain meds?

You sound like you are doing very well in your recovery.
Best,

Lesley

We both started nivolumab on the same day and have identical pathology (PT3AN1M0). Some differences: my PT3A tumor was 5mm but I had three deposits in my node with the largest being 2.7mm. Plus I have/had regular carcinoma (papillary & CIS). And I had adjuvant DDMVAC (4X).

Are you doing ctdna testing (signatera, northstar response)? And genomic profiling with natera altera or northstar select?

You can also boost nivolumab with:
- CBM588 bacteria: https://www.cityofhope.org/news/microbiome-and-kidney-cancer
- Akkermansia bacteria: https://pmc.ncbi.nlm.nih.gov/articles/PMC9330544
- Camu camu supplements: https://ascopubs.org/doi/10.1200/JCO.2024.42.4_suppl.TPS491
- H1 antihistamines (Zyrtec/Claritin): https://www.mdanderson.org/newsroom/antihistamines-may-improve-immunotherapy-responses-study-finds.h00-159465579.html
- Melatonin: https://immunocine.com/the-integration-of-melatonin-in-cancer-immunotherapy-advancing-cancer-treatment-strategies/#:~:text=Beyond%20its%20direct%20anti%2Dcancer,immunity%20%5B16%2C%2017%5D.

Worthy of consideration:
- Intermittent fasting: https://www.jci.org/articles/view/161483#:~:text=The%20mechanisms%20underlying%20the%20beneficial,of%20IGF1%20reduction%20(5).
- Losartan: https://www.uchealth.org/today/blood-pressure-drug-to-fight-pancreatic-cancer-trial-underway/#:~:text=Losartan%2520as%2520a%2520multipronged%2520attack&text=All%2520patients%2520receive%2520a%2520four,It's%2520the%2520spread%2520of%2520it.%E2%80%9D

I fast daily from 6PM to 11AM.

Interesting: eosinophils can indicate response to immunotherapy:
- https://www.sciencedirect.com/science/article/pii/S1558767324000703
- https://www.tandfonline.com/doi/pdf/10.2147/CMAR.S333823
- https://pubmed.ncbi.nlm.nih.gov/33312694/

DDMVAC and months of antibiotics wrecked my intestinal health most likely. Hence an effort to recover it ASAP. I added Physician’s Choice as another supplement and I am trying to eat healthier.

I was 51 when diagnosed with bladder cancer last November. I had 4 tumors where 3 were removed on December 20th during TURBT surgery but I still had one that had already grown into my bladder wall, which eventually ended growing outside my bladder wall. Anyways, I did not have any chemo or radiation prior to the RC because the type of bladder cancer I had didn't respond to either of those. So February 19th I had surgery and now have a neobladder. Luckily I didn't have to wait any longer as the tumor was growing very fast and ended up being 12cm. They also removed my uterus and 24 lymph nodes which only 1 was positive. I had a catheter in for 4 weeks, it was removed on March 20th. You have a voiding schedule to keep up with afterwards as you have to train your new bladder and alot of work to tighten your pelvic floor muscles, but in the end I am glad I went this route rather than with a Stoma. I started immunotherapy on April 3rd for 1 year as the cancer was high-grade/ aggressive, so hopefully no new cancer cells decide to form.

Hi Jo. Thank you so much for your response and sharing your experience . I have seen many consultants and many have recommended to have chemo (cisplatin and gemcitabine) before surgery. The cancer was found on September 2024. I have decided to to go ahead with the RC wile I’m feeling strong and after the pathology report I may consider the adjuvant chemotherapy.

I can only hope I am making the right choice . Surgery will be 21st of May .

Best ,

Lesley

Of course! My oncologist and surgeon agreed that I should have chemo prior to the surgery. I think that was to see if the chemo could shrink the tumor and hopefully also damage any other cancer cells in lymph nodes or anywhere else they couldn't see. I had chemo for three months (July-Sept), took a month off for my body to recover some from it (Oct) and get another CT scan and then had the RC with a neobladder "installed" on 11/7. They could tell from the tissue that was removed that the chemo had worked. There was damage to that tissue.

I'm personally glad that I did it before the surgery. The surgery recovery is pretty long so I was glad I already had the chemo behind me and could just concentrate on healing instead of also having to look towards chemo. The chemo I had was cisplatin and gemcitabine. It wasn't easy, but I just tried to concentrate on getting through the chemo first and then deal with the surgery later. One day at a time.

Is your oncologist suggesting chemo first?

Hello Jo.

I've been advised that I will need a radical cystectomy. I'm confused about deciding if I should have the surgery now, before chemotherapy or have chemotherapy after the radical cystectomy. Could you possibly share what you decided to do?

Thanks.

Lesley

Hi . Quick update ..after completing the 6 week course of the BCG instillation I found out that it was not effective and now looking at a radical cystectomy. I’ve been advised that I am not a good candidate for a neo bladder . I’d love to hear from anyone who has gone ahead with the RC.

Thanks !