After Keytruda, what's next?

@carebears91, I moved your questions to this existing discussion called:
- After Keytruda, what's next? https://connect.mayoclinic.org/discussion/keytruda-1/

I did this so you can connect with fellow members who have non small-cell lung cancer and had to consider treatment options other thay Keytruda like @lls8000 @richcolleen @jannad @liz8716 @bentrivercarla @schmeeckle64 and @2onlow8

I encourage you to ask your questions to your oncologist and share your thoughts about not changing medications, especially Keytruda. Your oncologist can consider you and your husband's preferences and also explain the mechanisms of action if this is not they way Keytruda works.

You may appreciate reading @merpreb's post about questions to ask the oncologist here: https://connect.mayoclinic.org/comment/273866/

There may be other options for your husband. I always say, keep asking questions until you understand the "why" and are comfortable moving forward.

Thank you. After reading another website on how some patients have been on Keytruda for more than 2 years it makes me wonder if they did not leave him on it long enough. He had Taxol with it to give it a boost, but they said neither was working. I feel that they should have left him on the Keytruda and added radioisotopes with that.

It sounds like you have prepared some grest questions for the next appointment with the doctors. I hope you appointment goes well and you get some clarity on the approach that they are taking.

It is my understanding from my oncologist that the two-year timeframe with Keytruda is based on the length of the original trial which was two years. Some insurance companies will not pay for treatment based on the length of the original trial while others continue to pay based on patient response.
Also, Keytruda itself will not "kill" cancer; it eliminates the inhibitors that are preventing the immune system from doing its job and removing the cancer cells. If they are saying Keytruda isn't working they are probably saying the immune system still isn't responding the way it is supposed to. Keytruda will only be effective on those cells that are checkpoint inhibitor positive which, it sounds like, may only be a portion of his whole situation.

Hi. I was on Keytruda for a year and a half. Then stopped treatment for over a year. Had a scan last week and my tonsils, right adrenal gland and lymph node in my groin lit up. Some really weird places. I'm starting on optiva and yoviro. Not sure I spelled that right. My oncologist said it was a better immunotherapy. I guess we will see. I'm a little scared.

Schmeeckle, I can imagine you're a little scared to start new treatment. Here is a discussion you may wish to join as you prepare to get Opdivo (nivolumab) and Yervoy (ipilimumab) immunotherapies.
- Has anyone had the Opdivo (nivolumab) / Yervoy (ipilimumab) protocol? https://connect.mayoclinic.org/discussion/opdivo-yervoy-combination/

Thank you. He is going to have pinpoint radiation and just had his gallbladder removed, but is still very sick. I worry that if he does not get these stomach issues worked out he will not be strong enough to tolerate anything. Going back for post surgical this week so I may have to push for something else to be done. I guess the reason we don't understand all of this is that he was told it is slow growing?? I would hate to see what aggressive looks like. I just never did understand why they took him off of it for 6 weeks until he started radioisotopes which they say is not working either. After those 6 weeks he had a new tumor, the others had gotten larger and now has spots on his liver.

@liz8716 Elizabeth - Keytruda would only be prescribed if your cancer is checkpoint inhibitor positive. The short answer is Keytruda eliminates those inhibitors that are prohibiting your immune system from doing its job and ridding your body of cancer cells. The two years is because that was the initial trial length for Keytruda and some insurance companies don't provide for treatment beyond two years because of that. However, there have been a number of patients treated successfully with Keytruda beyond two years. In my opinion I wouldn't want to deal with a doctor with an attitude like yours. I started treatment with Keytruda in late October 2020 and by the end of April 2021 there was no longer any evidence of disease so don't tell me there isn't any hope! We are all different and our results will vary but my oncologist at Mayo told me right from the start that he had every confidence in the world that immunotherapy would work for me and he was absolutely right. That's who I want on my team!

First of all, hang in there. Cancer treatment is a frustrating process. We want things to move at warp speed and who can blame us for that! Six months into my Keytruda treatment scans showed a second cancer site totally unrelated to the initial NSCLC site; adenocarcinoma versus sarcoma. As a friend told me I was "hoggin' all the cancers". It ended up being an uncommon form of cancer called gastrointestinal stromal tumor (GIST, for short) that was surgically removed successfully last August. The best news is that he is now in treatment and being (what seems like) constantly monitored and that is a very good thing. You're on top of things so stay on top of things. Amazing things are happening in the treatment of cancer. I know it's hard but there is always a need for optimism.

Hello fighters! As I'm reading this discussion about keytruda I felt compelled to share my keytruda story. In May of 2017 three months before my husband died of leukemia I was diagnosed with stage 4 lung cancer that had spread to my adrenal gland. I went to Houston Methodist in the medical center. They put me in a trial which involved inserting a fissure into the tumor on my lung. They gave me pinpoint radiation and loaded up the fissure. The fissure destroyed the tumor and then traveled to the tumor on my adrenal gland and embedded itself into that tumor and destroyed it as well. This process on me only took a few months, no side effects. Then they started my keytruda treatments. I got a keytruda rash twice and they had to stop treatment early due to colitis. This is 2024 and I'm alive! There is hope out there for you! I suggest you get ahold of Houston Methodist in the medical center and ask about their trials for lung cancer. I would give you the name of my oncologist but unfortunately he moved to Colorado. I do know you have to have certain markers etc to do this, I don't know all the details. I do know I qualified because I hadn't had any previous treatments. I don't think, just my opinion that just keytruda on its own is going to help you. I hope this information is helpful to just one person out there. If it is please let me know and I will share this information on other websites as well. Keep up the fight my fellow fighters!