Keytruda side effects after completing 2 years lung cancer treatment

@lls8000 My husband completed Chemo and will be starting Keytruda next week. He managed to get thru the 4 courses of chemo, but 1-2 years getting Keytruda is frightening. I read the posts for which you provided the links, but they are from 2018. Are there more recent posts about Keytruda effects, or should I post again? thx

@par92 hello
I found your post from April.
My husband is starting Keytruda next week.
What “bearable” side effects did you experience while you were getting Keytruba? How long did you take it?
How long after completing did these new issues start? Are you doing any better?
Thanks

Keytruda was a life saver for my husband with pancreatic cancer which metastasized to the adrenal glands 8 months after chemo and excision. We were thrilled that he fit the guidelines for it. Clearly the side effects were minimal as he went through it. He felt he had his life back with the treatment within 2 months the metastasis had disappeared and stayed out of site at least. He would still use it again. He was on it for 2 years which we understand is usually as long as a person is on it for. He had some itchiness during that time that was controlled with medication. At the end of the 2 years ,He had not stopped it when he began having a very rare side effect for Keytruda, an autoimmune illness. They stopped the Keytruda. The side effect was mucositis in the mouth. This has been abated with steroids and is going into remission with another medication. Although this was difficult, once the biopsy was made and diagnosis & treatment was in place he has responded well. The blessing has been he is finishing his 5th year since his PC diagnosis.

Thanks so very much for your reply. I am encouraged with the 5 years!

My husband’s is lung cancer, had Lobectomy, started chemo, LC metastasis to adrenal gland was discovered, just finished chemo, and adrenal tumor is gone.

He will start Keytruda. I’m concerned about side effects. Now I know to take quick action if skin issue appears. I especially hope for no rare side effect of Keytruda causing autoimmune illness.

THANK YOU!

P.S. Did your husband suffer any appetite or food issues during Keytruda? How about any GI distress- constipation, diarrhea? THANKS

Good morning @abob, I'm glad that you and your husband have received the information that you needed to make a decision on treatment plans. It's never easy.
Reading through the past discussion information can be helpful as the treatment approach likely hasn't changed much in the past few years. Sometimes adding to an existing post will revive the discussion. Adding a new discussion is ok too. Some members may not want to repost the details of their experience, so adding to an older post may gain more interest than an entirely new post, but that's up to you. 🙂

Hi @abbylouise , Welcome to Mayo Connect. Congrats to you and your husband on five years! That's great. How is his quality of life now?

With the GI issues previously stated, one has to always be alert to deal with previously caused factors day to day. So distinguishing the last 3 items you mentioned @abob from anything new is always difficult. He never has had appetite problems and of the last 3, we were able to attribute any issues to previous items, I mentioned and deal with them. No GI issues were contributed by Keytruda. After a difficult time with an antibiotic, he did have tests to assure all that there were no Keytruda issues which demonstrated no relationship to Keytruda. The Creon dose needed raised which resolved the issues. A great health care team giving support is so important. Thank you for asking. I hear you, as we initially sat considering Keytruda use and stared at the chart showing the potential side effects we wondered how it would go. Clearly any one of the cited side effects on that chart could happen or not at all. Everyone is different. We looked at our alternatives and he continues to be glad he used Keytruda.

He is enjoying life! We aren't the rigorous couple we once were but 80 softens the drive. Yes, he is not the same as he was if he had had no cancer I am sure. Takes a daily rest periods but is highly involved in life from a greater distance due to the covid scene. Except he loves to shop and hike!! He has been off of therapy for over a year due to the side effect. But we are full of joy to share so much of life together 55 years coming up. We take one day at a time and rejoice in that day. I just found this site and have wished for something like this the last 4 years, but we had a "mentor" who had had PC before us. She survived over 8 years until this March and gave so many folks on the trail so much encouragement.

The bearable side effects during treatment were exhaustion, some nausea, bouts of itching, and feeling cold all the time. I stayed grateful each day, still do.
There are no signs of cancer. CatScans are done every three months and frequently will less as time goes on.
I was on Keytruda for two years, ended treatment in November. Unfortunately, a few months later, the Keytruda caused pancreatitis.
and this week I was told it is chronic pancreatitis. The issues continue and we are now experimenting with a variety of medications with the hope we can minimize these side effects. My doctor disclosed she is treating two other patients with the same issues, and they are responding well to their prescribed meds.
I wish you and your husband the very best on this journey. To be cancer free is a blessing. Live this journey one day at a time. Keytruda has been a life saving drug for me. And I am so grateful this treatment is available for others.