← Return to Keytruda is being stopped after 28 mos for metas to lungs throat cance

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Profile picture for Sue, Volunteer Mentor @sepdvm

Hello @whrdds, Im sorry to hear that insurance is stepping into the way of your treatment. That is intensely frustrating. Has your doctor done an appeal to consult with an actual medically educated individual with the insurance? I had SCC deep in my ear 13 years ago and it had invaded bone so a temporal bone resection was done with chemo/radiation. I later had lung mets which were resected. My most recent met was to my kidney and associated lymph nodes in 2020. My Mayo oncologist started Libtayo, which works along the same pathway as Keytruda. The kidney met and lymph nodes disappeared on this treatment and after 27 months on the infusions, she recommended "taking a holiday" from the drug. I was having poor appetite and tiredness as side effects. My last scan 2 weeks ago was still clear after being off the drug for over 2 years. If and when a new metastasis shows up, we will restart the infusions. Their cost is incredible so I understand out of pocket is impossible. I had no issues with Medicare or secondary insurance coverage while I was on Libtayo. I assume that it will be approved if I need to go back on it, as it worked so well. I do many supplements and treatments to keep my immune system supported since it is what is keeping me alive vs this cancer. I hope you have similar good results if you have to take a "holiday" from Keytruda. Keep after that insurance company though, as they should not be making treatment decisions for us.

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Replies to "Hello @whrdds, Im sorry to hear that insurance is stepping into the way of your treatment...."

@sepdvm thanks for your reply. I will be meeting with my oncologist in a few days to discuss my latest scan and also this insurance rejection. I also take supplements to help keep c at bay. I fear that I have been placing so much trust in the Keytruda that discontinuing it seems like a defeat, and defeat is not something I welcome. I know I have to redirect my optimism since reading shows that even 3 years after discontinuing Keytruda, 86% of patients are still doing fine. I always like to place myself in the "doing well" percentage, but it that were always the case, I wouldn't be dealing with the cancer. Time will-as always-tell.

Hi @sepdvm,
What many supplements and treatments are you taking to keep your immune system supported?

@sepdvm I'm excited to hear your success with Libtayo. I've been on it since 06/2024 at Mayo for squamous cell invasion of a lymph node. So far no recurrences but I also get Signatera bloodwork every 3 months which still shows some of the original tumor in my system that is
so small it won't show on a pet scan. So, I'll stay on the Libtayo as long as possible as I have no bad effects from the drug.