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After Keytruda, what's next?
@merpreb ...Hi, my name is Elizabeth. 31 yrs old.I was diagnosed with stage IV nsclc in April. I saw your story on here and it has given me hope. I'm currently on keytruda. Unfortunately my oncologist at this time says there is no cure and that keytruda can only be administered for 2 years. That she is only helping me live longer at this point because there is no cure. I did have taxol and carboplatin (4 rounds). My tumors have shrunk. But when I ask the dr "what next after 2 years of keytruda she says we'll wait and see. It's sort frustrating. I have to ask. What was your treatment?? Because the 5 year mark almost sounds impossible from what my dr states. Or if anyone else here knows of any new treatments.
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Keytruda is immunotherapy and not chemo. It is the top tier of immunotherapies for many cancers. Have you researched any of the terms and new vocabulary related to your cancers? It might help your anger and fear reduce and make you feel more in control. We lose so much when we have cancer. But knowledge is power because we at least know what things mean! It does make a difference. I have also found that knowledge reduces fear. Have you?
https://www.keytruda.com/how-does-keytruda-work/-
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1 ReactionAs far as I know, there is not.
Chemo is like radiation the gift that keeps on giving. They should really educate people of what to expect. From what I have watched this last year with my bf is devastating. Keytruda continues and read the side effects. He has them all and continues to worsen. Zero improvement. And of course told everyone us different. They know they see millions of patients they have all the stats. Being upfront and truthful to very ill people is better than telling them everyone is different. Then at least they can make solid decisions with what tome they have of don’t have.
My bf is also on Keytruda. It will be one year sept. He neck and throat cancer Squamish cell carcinoma hpv16. He out with surgery followed by 6 weeks of cisplatin chemo and radiation. Was given a 98% cure rate. 3 month later the pet scan. And it had moved to lymph node on windpipe. He start Keytruda last sept.
He’s not doing well, and has all the side effects. He’s had diarrhea for at least 4 months, fig brain, drops things, balance is so bad that he has to sit to talk to you because he has to focus just to stand, he’s lost over 40lbs, shortness of breath, headaches, feels sick, stomach hurts, voice changed, etc.
Most frustrating for him is he can no longer do the things he could before, he says this is not him.
He just had a pet scan and something lit up on his neck again, however they ruled it out as cancer(but will look at it again in 3 months). Of course this is exactly what happen in his lung too. Shoes up and then it will be dark cause they Keytruda is going it’s job, blocking the cancer.
So he thinks he’s in remission. To me I would like these doctor to tell him. That’s cancer trying to make a comeback, that the Keytruda is doing it’s job.
Truth helps people make good decisions for themselves with what is going on with their bodies. He is not getting better. The side effects are I think worse than the cancer. At this point he also has stated he wants to stop the Keytruda.
So he is taking some supplements. He got the info from Cliff High who has had cancer and is show he no longer has cancer. C60 is one of them. He told my bf to get off the cancer drugs and take these supplements. Of your getting off Keytruda, you should at least look up Cliff High, start that program. You got nothing to lode and everything to gain.
I wish you God’s Love and strength. He’s got you.
And honesty what I have watched with my bf, I will never take any type of chemo, Keytruda, etc. I’ll definitely take supplements etc.
Also look up TheRootBrand. Com. I watched a video on the doc scientist that developed it. All natural and gets metals out and good things in your body.
I’m actually going to order it today.
Oh boy! SO! relate-able and SO true! My husband recently made a remark to the ‘everyone’s different’ comment after being seen by a fellow, saying: ‘How many times do they teach you to say that?!’
Sorry your BF has so many Keytruda side effects-. Here, it’s not so much the Keytruda as it is the chemo & radiation-. Currently having 10 days of pain flares for spine radiation. No one said anything about pain flares...
To all who have commented - It’s a hell-like battle, but don’t give up hope. When hope is gone, everything is gone-.
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2 ReactionsHear, hear- Even when things seem so hard to bear, there is always hope. You just never know!
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1 ReactionLast March, My bf diagnosis with neck/throat cancer squamous cell carcinoma. had surgery followed by 6 weeks of cisplatin chemo and proton radiation. With a 98% cure rate. 3 months later petscan and metastasis to a lymph node at end of wind pipe( inoperable). So he was placed on Keytruda in sept last year. They will keep him on Keytruda for 2 yrs. unless the Keytruda stops working or it attacks his organs.
So, his side effects have continued to get worse.
He has pain in his feet, his back, no balance, brain fog, drops things, leg cramps, headaches, stomach aches, very tired, slow with talking, anxiety, confusion when upset, shortness of breath, diarrhea going on 4 months, he has all the symptoms. They tell him he has no cancer. Yet again this last pet scan shows a little flicker on his neck. They ruled it out as cancer and will check it at next petscan in 3 months along with a ct scan. His lung did the same thing. With this being said, the Keytruda is blocking it from full turn on cancer. To me that’s what he should be told. The Keytruda is blocking it. So basically to me he’s not cancer free or in remission. He was told if he goes off Keytruda the cancer will come right back, so it’s not gone. It’s blocked.
I would rather them just be factual to him and tell it the way it is. Then he can plan his life accordingly. See and do things you can now. His quality of life has dramatically changed.
Jim’s cancer is a virus. It laid dormant for 42yrs. It’s hpv16 virus. He got genital warts when he was 26 yrs old. The cure rate is slim once it move to the lung.
So they will not take him off Keytruda till sept 2022. Unless the cancer takes over or the Keytruda attacks his organs.
I guess for him, he doesn’t know anyone that’s in his Cindy or gone through all this. He wants to know their experience’s and outcome.
He wants to know his path. Mayo should share this. People can make better long term choices with knowledge. All he has is hope on a string.
From what I’ve read he has a 20-30% survival rate at end of 2 yrs on Keytruda. He has not been told this, I’ve read it all.
He also has intractable hiccups that started in 2009. Now they can last up to 13 hours a day. He takes a special medication to sleep at night to help his heart. Yep he’s a mess. But I sure love him and his mess.
I wish your hubby all the best, with a great recovery. Hopefully his side effects will diminish quickly.
Oh, look up theRootbrands .com. All natural to help your body get rid of metals and replenish with excellent minerals and vitamins. This doc is a scientist. I actually watch the video thru his glory ministry.
Excellent video.
20 different directions! That's what I've experienced! PLUS BAD INFO! BOTCHED BIOPSY, 100% CURABLE> NOT!
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1 ReactionHi Cobraguy, I, too, would be angry at getting bad info, being sent in 20 different directions, and having to endure the consequences of medical error. And now, on top of it all, you're experiencing side effects from Keytruda treatments.
There's much about your situation that members in this online forum can't change. But we are here and we are listening. Maybe we can help by offering suggestions to ease the side effects you are experiencing. What side effect are you finding the hardest to manage?
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