After Keytruda, what's next?

I too have stage 4 lung cancer. Did the chemo treatments for 8 treatments and after 9th said that’s it. (Was sick for 10 days recouped next 10 and went back for more) no more. Was put on Keytruda and my 2 years are up end of next month. Was just at Mayo for check up every 3 months and asked about what next. Was told that starting in November no more infusion and see what happens. I still have tumor in left lung. Nodules and cells in kidneys, stomach and left lung which have not increased in last two scans. Guess I outlived their expectations and had the best summer since diagnosed. No fractured vertebrae’s this year. Should not say that out load. Last year and half had 5 due to osteoporosis and chemo makes bones brittle. Turning wrong or lifting 5 lbs does it to me. Good luck to you.🙏🏻

Elizabeth, Sounds like you are in the same boat as me, but I'm 65. Diagnosed with st. 4 NSCLC and MAC in October 2020. I was on Keytruda, Alimta and Carboplatin from December until May with the same no hope story as you. My tumors(or MAC) growing so I was switched to Ramucirumab and Docetaxel, which I was taken off last week, due to tumors still growing, and I am now on the Big 3 for MAC infection. Apparently they cannot tell the difference. We all have to keep hoping we survive long enough for a new cure before we pass. Early tests with ivermectin(horse wormer) look very promising. I also read something about a new thing called a med bed, but little info out there on this. You have youth on your side so don't give up!

Carlie, you may also be interested in the tips members share in this related discussion in the Cancer: Managing Symptoms group:
- Cancer Related Brain Fog: How do you cope with it? https://connect.mayoclinic.org/discussion/cancer-related-brain-fog/

I just got first KEYTRUDA yesterday, no side affects noticed yet! I'm actually still irritated from 10 shots of Radiation on my spine! Inflamed intestines etc

Hi 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?

20 different directions! That's what I've experienced! PLUS BAD INFO! BOTCHED BIOPSY, 100% CURABLE> NOT!

Last 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.

Hear, hear- Even when things seem so hard to bear, there is always hope. You just never know!

To all who have commented - It’s a hell-like battle, but don’t give up hope. When hope is gone, everything is gone-.

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...