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Keytruda is being stopped after 28 mos for metas to lungs throat cance
Insurance is now denying my Keytruda Rx after 2-1/2 years for throat cancer which metastisized to lungs after chemo, radiation and lung lobectomy. No side effects to Keytruda. My oncologist would keep me on indefinitely since she feels there is insufficient evidence of survival rates with head and neck cancers after stopping Keytruda. The cost makes going on out-of-pocket impossible. Has anyone else been down this road and have anything to share with me?
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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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3 Reactions@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.
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1 Reaction@wrhdds I understand the defeat feeling as I experienced that at the end of original chemo/radiation. I didn't like the "wait for it to come back while not doing anything to prevent it" feeling. I went right into an immune augmentation program in Freeport, Bahamas the next month and have kept it up ever since. It helps to feel you are actively fighting. I think your positive attitude will support you through this. None of us chose this pathway, but the more optimistic we can be, the stronger we are. I had a 30% 5 year survival rate starting out and I did all that I could to be in that 30%. You too will use your education, support team, and inner strength to stay on top of cancer. Check out my favorite book, by a retired Mayo palliative care physician: How Not to be My Patient by Edward Creagan MD. I like to reread it periodically to keep my spirits up.
Hi @sepdvm,
What many supplements and treatments are you taking to keep your immune system supported?
Hi @wrhdds,
What many supplements and treatments are you taking to keep your immune system supported?
I take a multi-vitamin, a VitB+C, Vit. D3, Methylene Blue, an energy supplement, and several protein shakes a day.. Nothing exotic.
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1 Reaction@roblem I have been on a form of Beta Glucan for 13 years that was started at the immune therapy clinic I attend in the Bahamas. I have changed brands but now take Glucan Elite which I get on Amazon. I take a probiotic daily, Manuka Honey, and a medicinal mushroom mix powder from Real Mushrooms. Vegetables, nuts, and fruits are a bigger part of my diet now and sugar is kept to a minimum. The clinic I use in Bahamas has changed to Quantum Immunotherapy (Quantumimmunotherapy.net) and I started there right after my chemo/radiation in 2012. It was called the IAT Clinic (Immune Augmentation Therapy) then and has been active since the 70s. While the original doctors have passed away, the process still continues under Dr Brown and I give myself multiple injections daily. You can send me a private message or check their website for more information.
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2 Reactions@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.