Keytruda for more than 2 years?

[Ina3]

Hi everyone.

Trying to find out if there is anyone who stayed on Keytruda after 2 years of treatment. After my research, the recommended duration for being on Keytruda is 24 months. I wonder what patients do after 24 months? My dad has been taking it for 1 and half years already with great results and want to find out what he should do next after 2 years?

[ThePurplePlace]

There are actually quite a few who have been on Immunotherapy for over two years, especially those who started it while still in Clinical Trials.

The new "2 year" schedule only came out within the last year and my Oncologist said that are taking that on a case by case basis, at this time. Some folks (especially those who are now NED or Stable) look forward to stopping at two years to give themselves a break. Others who have been on it a long time, are somewhat fearful of stopping and how it will affect them. I have not heard of anyone who was "forced" to stop at two years, except for those who are have adverse effects.

I was on "Opdivo" one of the other Immunotherpay drugs and was only on it for 9 months, but it worked amazingly well for me and within the first few months shrank my tumor and I became stable. BUT, I also developed "low grade pneumonitis" three times (a known side effect which are higher grades can be very serious, ever stable), so after my third about, my Oncolgist felt it was best to stop me. That was back in August of 2016 and I have remained Stable ever since without any further treatment.

I was happy to go off, because it was NOT an easy treatment for me. I was also scared and did not know what the future would bring, but as you can see, I'm still very well. I'll be celebrating my 5th Cancerversary this month, living with Stage IV Lung Cancer and I'm happy to be out of treatment.

You Dad will need to talk to his doctor and make a decision, but again, unless something changes, so far they are NOT typically requiring people to stop, especially anyone who is not NED or stable. As of my now my Oncologist is allowing patients to stay on IF they really do not want to stop, but also said, it may be wise for some to take a break, if they are doing well. Because they drugs are still relatively new, no one one what long term use may cause down the road and we already know that some folks can develop side effects EVEN after stopping treatment and some can be serious. It's not an easy question or answer. My Onc also said that those who do respond well are living longer and longer and he feels based on the stats we do have that I still have many years ahead, which is wonderful news!!

It's a hard decision, but I do also know many who have stopped and many of us are all doing well. Most of us were happy to be out of treatment and we are carefully monitored with routine scans, check up and labs.

Good Luck and I hope your Dad will find an answer that he and his doctor feels is best for him.

Lisa

[Ina3 in reply to ThePurplePlace]

Lisa, thank you so much. You gave so much hope and congratulations. That is amazing.

My dad never had any reaction and he has been stable for now. I do hope that he will continue like this.

So, at this point you dont take anything else? Not even herbal remedies or supplements? How often do you check?

Thanks again. 🙏🏼

[ThePurplePlace in reply to Ina3]

Nothing except meds that I was taking (prior to cancer for other health issues) and of course a daily multi vitamin which I've also taken for several years. I never took any herbal supplements or remedies. I would not add anything new without consulting with his Oncologist.

I have my port flushed every six weeks, and have labs and see my Oncologist every three months. Scans are now every six, but were every 3 for the first year.

Best wishes again to your Dad -- May be all be safe and now get through the Covid 19 virus without any issues. I'm sticking very close to home and in my area, all schools and public buildings are now closed, as well as any large crowd activities. I was supposed to be in Las Vegas this weekend and then on to San Diego to visit my son. We had to postpone all our plans and I'm very happy we did, but it sure was a huge disappointment. I live on the opposite coast from my son and we only get to see each other a few times a year. We were all meeting in Vegas to celebrate my 5th Cancerversary, but now will plan to go in the Fall, when things are safer!

Lisa