autoimmune issues related to Keytruda

[4yearsnow]

Hello everyone I am new to this forum and wondering if there are others out there who are struggling with autoimmune issues after Keytruda. I have been struggling with autoimmune hepatitis related to Keytruda for 1 1/2 years and being treated with Prednisone and Cellcept. I have had numerous spikes and we have found it difficult to get medication regulated and optimally to put an end to this episode of my cancer journey. Anyone else???? I feel quite alone with this issue

[Jacky5]

Sorry I can't help you with your query....I'm not sure if Keytruda is used in the UK for ovarian cancer although I have seen there is at least one trial using it. I see you are in the US so wondered is Keytruda used routinely there for OC?

I just wanted to wish you all the best though and I'm sure there will be others who do have information that will help you.

Liz x

[4yearsnow in reply to Jacky5]

Hi Jacky5 Keytruda was approved by our FDA several years ago for a small group of Ovarian Cancer patients. MSI-H is a genetic mutation which was found when tumor analysis was done, like through Foundations here in the US. I have 2 out of the 3 qualities which made me eligible. I also have a high tumor burden which is another one. We are a small group. Otherwise, it seems like it is being tried in clinical trials and sometimes used with other drugs as well. Keytruda is one of the immunotherapies which are so different from chemo. Much easier to tolerate but the issue is that because the immune system gets so revved up to fight the cancer, it can also cause autoimmune issues. I am grateful for Keytruda as I feel it saved my life but my autoimmune issues get me down and I am frustrated. Thanks for your interest and good wishes. Hope you are doing well

[Jacky5 in reply to 4yearsnow]

Thats really interesting, thanks so much for the information.I'm so pleased that Keytruda is working for you.

It sounds as though the side effects can be pretty dramatic for some but then so can the benefits. There always seems to be a pay off with these drugs doesn't there?

I'm brca positive and I feel I'm doing well at the moment on Olaparib but of course I'm ever fearful of a recurrence.

I try to keep an eye on developments and trials and the Keytruda trial was one that I've made a note of.

Fingers crossed I won't need it of course.

Thanks again and all the very best to you.

Liz

[mizpurple]

Hi there! I too am one of the few who has been given Keytruda to treat my recurrent mucinous OC after exhausting all other possibilities AND because the markers in my tumor tissue suggested Keytruda might be effective. It did save my life and left the tumors completely calcified, but unfortunately it also took out the beta cells in my pancreas, causing me to develop adult-onset type 1 diabetes. I am living with it fairly well now, but it was certainly life-changing. That particular side effect is supposed to be very rare - guess I just drew the short straw. My oncologist has told me that if/when I have a recurrence, she will likely want me to consider another course of Keytruda as my best option. Sometimes there are no easy answers. I hope you get things settled down soon! All the best - Deb in Colorado

[4yearsnow in reply to mizpurple]

Hi DebWhat a strange drug this Keytruda of ours. It saves our life and then does wacky things to our bodies. My current mantra is that it sure beats being dead so that's one perspective I guess. Your beta cell thing is interesting because it doesn't seem to be caused by a reversible inflammation as are most other Keytruda reactions. I just keep on going trying to learn to live with this new autoimmune situation which my Onc says will go away at some point. 4 years is the longest he has seen and I'm at 1 1/2 years. That while I'm so very sorry that it hit your pancreas as it did, I am glad to meet a fellow traveler on this journey. You are this first person I have found that is in our situation of successful Keytruda treatment with strange and mysterious reactions. I'm glad you are learning to live with diabetes It must have been quite a life changer. All my best to you

Janet

[GwenHP]

Thank you to you both for sharing your experiences with Keytruda. I’ve been excited to see more options are becoming available for those diagnosed with mucinous OC but hadn’t been aware of all the side effects.

[ungloved]

I have metastatic breast cancer, and the keytruda caused scleritis of my eyes, which is usually caused by an autoimmune disease. It also caused A fib, and consequently I had t have a heart ablation, and I am currently on Metoprolol and Eliquis, probably for life. Consequently, my oncologist stopped the drug.