Stopping keytruda after 5 years??

Posted by hardtailsmsncom1 @hardtailsmsncom1, Oct 11, 2024

5 yr. Bladder cancer patient here. Been getting treated with keytruda every 3 weeks for 5 yrs then my pulse was low and they took me off.. just cut me off!! No consultation!!

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

Lucky for you -kidney doc said keytruda killed my dad. It shut his kidney down - had to have one removed along with bladder so was left with one.
At least the docs seem to be looking out for you. My dad is past
away.

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Hi @hardtailsmsncom1, is sounds like you were having significant side effects from treatment that warranted stopping or pausing treatment with Keytruda (pembrolizumab).

Have you been able to take with your oncologist in the meantime to discuss next steps? May I ask what stage of bladder you were diagnosed with? How are you doing now?

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I am in Fairbanks,Alaska.I was diagnosed 2/14/2019 with stage 4. Went to University of Washington to have bladder scraping. Then back to Fairbanks for the required chemo and radiation,4 odd months. Still had pain in side. Sent to Anchorage for pec scan(don't know if that's right ,?? Anyway see some cancer on spine so Keytruda was started( every 3 weeks.... everything going good until about 4 months ago my, Dr. Jacqueline Cox @ j.carrol cancer center started talking about taking me off and continuing with pills. That conversation was dropped and things continued.In August I show up for infusion and pulse is 38. Pulse has been low( bradycardia) and they started talking about Medicare only paying for 2 yrs, etc,etc and I've been on 5 yrs... I need some conversation and guidance. Now they say, going to monitor closely and have blood work and cat scan every 3 months....Will the cancer jump since I have no keytruda in me....STRESSED OUT IN FAIRBANKS

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I was diagnosed with stage 2b esophageal cancer. After treatments and surgery, the cancer had no more evidence. Nine months later it was discovered it had spread to my brain, had surgery and a few quick rounds of radiation. I was restaged with stage 4 now. I was placed on Keytruda for maintenance and this was in April of 2020. I am still going in for treatments. I was every 3 weeks but after 2 years was put on a 6 week rotation. No side effects and no evidence of cancer. I get MRI and CT every 6 months and my blood work is checked before treatment. However if I do develop any side effects I would stop.

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On BCAN/Inspire there are quite a few patients with many different malignancies who had varying lengths of ICI and continue to be in remission six to ten or more years later. So stopping ICI after many years does not mean it is a bad thing. There is also checkmate 274 which showed exceptional durable responses for many patients, especially those with an expression of PDL1 > 1%. Checkmate 274 was adjuvant to address/prevent recurrence/MRD but the same principle applies. The theory is that the ICI will eradicate any MRD and/or train the immune system to do so continuously.
https://ascopubs.org/doi/10.1200/JCO.24.00340

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