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16 days agoWell I’m back to give an update. Latest pet scan is not good but deep down I knew this as my speaking has been getting worse and it’s been well over a year since the radiation has stopped. My ENT Dr has been fantastic through all this but now told me what I have been expecting all along but it is just sooner than I ever expected. I have been on Keytruda now for several months but it seems although the oncologist who must be an optimist she has been wrong thinking it’s working it has not. Tung tumer s are back and now lymph node by my kidney is also lighting up. So they want to move onto Keytruda and 2 chemo drugs to try to extend what time I have left. I did ask about surgery knowing most of the answers but was told it would turn me into a human pezz dispenser removing my tung, voice box, lower jaw and rebuilding it with my leg bone and the lymph node is not operable all this is a hard no . Also on-top of the bad news the Keytruda is attacking my thyroid and it seems the drugs I have for that even tho have been upped 3 times still have not helped making me so weak. So to put this into prospective at the onset I was told this squeamish cell throat cancer is very treatable it turns out not so much.
Community Member
16 days agoKeytruda response times can vary greatly from person to person, and unfortunately there isn't a set timeline for how long it remains effective for tongue cancer patients. What's clear from this update is that facing treatment changes and difficult decisions requires tremendous courage. Many community members have walked similar paths with immunotherapy treatments and understand the challenges of managing side effects while dealing with progression. The strength it takes to share this honest update and continue exploring options with the medical team is remarkable, and this community is here to offer support through whatever comes next.
Community Member
7 days agoIs a second set of doctors an option?
Community Member
4 days agoSecond opinion is what found my tongue cancer! The Dentist I had been seeing was obviously to my concerns! So after about six weeks of playing around with him, I went for a second opinion and in six days I had a hard diagnosis! So glad I took control!
Community Member
2 days agoKeep up the fight! Praying for you.
Community Member
a day agoWell we had to drive 3.5 hrs each way to get a second opinion but it was worth it. Second look ENT/ Oncologist was a scope conformation of my ENT except the choice of chemo drugs and was also told she would not continue with Keytruda since I have had 6 rounds already and it has not done much if anything although my treating oncologist wants to continue Keytruda and adding 2 chemo drugs as she says the chemo combo seems to work well with the Keytruda. The fact I have an ongoing infection in my lower jaw is problem as I have been told as chemo can or will make the infection worse. So don’t do chemo and let the cancer grow and kill me or see if the infection kills me as the chemo does its thing. Not much of a choice and the surgery on my jaw I had scheduled is not for another 5 months. This is not going to help.
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