Immunotherapy side effects

Yes !! Weeks of it . Awful . They changed the steroid and bingo , immediately better . Maybe ask ? X

Thanks for that. Have a telephone consultation on Monday so will ask x

Hi Bella, I'm in the same boat. Had my last pembro in Jan and got diarrhea after that. Treated with solumedrol pack, now managed with Imodium (over the counter). Two loose stools per day and its been 3 months. My colon was beautiful last year per my colonoscopy, but now, it just can't seem to bulk up a stool without the Imodium. I eat homemade sauerkraut every day, and just started probiotics. I really hope the diarrhea resolves. Good luck to you! 

Hi Cindy, thanks for the reply. Sounds like we are very similar. I finished the course of steroids ( Prednisone ) a couple of weeks ago and am managing with loperide just so I can get to work in the morning. 

I'm being referred for a colonoscopy and endoscopy but feel like there is no end to the diarrhea at the moment. It sure does have an effect on quality of life doesn't it?  How are you coping with food? 'm missing variety so much! 

Hope you are feeling well otherwise and you can get back to normality soon.

Bella 

Hi Bella, 

Good luck with the endoscopies. I don't know what GI would recommend for immune mediated colitis except Infliximab for severe cases. 

Also, I started eating my regular plant based diet with lots of fiber after the first month, as even the BRAT diet did not make a difference in reducing the loose stools. 

Here's the good news from a research study: "Colitis reflects a prolonged immune checkpoint inhibitor effect and is associated with better cancer outcome and overall survival" https://jnccn.org/view/journals/jnccn/19/6/article-p700.xml

As a final thought, I have to remember that the cancer is gone, and I'm recovering from the immunotherapy. I have to give my colon time too, so I'm feeling hopeful. All the best to you too! 

Hi Cindy,

Was just wondering how you are getting on? 

Bella x

Hi Bella,

Thanks for asking about me. I still have loose stools, on average two per day, so its not excessive thankfully.  But 5 months seems long!  I also have intermittent nausea. Just yesterday I stopped coffee because articles said to remove caffeine for an anti-diarrhea diet. I also am limiting my roughage and eating a little more meat, not very fun since I prefer to be a vegan! I take the loperamide about 1-2x/wk, but it doesn't cure the problem. I'll see my oncologist on 7/5/22 for surveillance scans and labs, and ask for more advice. 

Other than my GI tract, I feel very good, my muscles and joints no longer hurt. How are you doing now?

Cindy

Hi Cindy,

Thanks for the reply!

Good to hear you're doing well and I sympathise with how long it's going on for.  

I'm at 3months now and like you on average 2 X daily luckily within the first couple of hours of waking. Every now and again it will wake me during the night but at least it's while I'm at home. Still not wanting to venture out to eat and be away from toilets just in case!! I take loperamide a couple of times a week as a just in case but don't know if I'm taking them enough. Unfortunately there's not enough guidance to read about our circumstance online is there? 

I took your advice about food and am eating more variety and feel much better with it, not so tired and have more energy and my joints feel better too.

Still awaiting for appointment with GI but like you said about it being a positive sign to the immunotherapy working keeps me going. My care nurse said the same thing. She also said she has had a patient who had diarrhea for 9 months and then it stopped. She was quite sure it will stop but I haven't spoke with my care team for a couple of months now.  

Keeping my fingers crossed for you all will be ok soon.

Take care, Bella x

Hi Bella- Update on my experiments...eliminating coffee did not make a difference, so I now enjoy my coffee again! Also I tried 1 tablespoon pectin dissolved in water for a few days, it did not help and was yucky! So, for now, its loperamide...I hope this does settle down for us!

Hi Bella, another update for you and anyone having immunotherapy-mediated diarrhea...I saw my Oncologist today and she said, unfortunately the diarrhea issue might not go away. Its not reported much in the literature, but she said that is what she is seeing on the clinical side with patients after having stopped Pembrolizumab. I prefer to believe your nurse who said it might take 9 months. I wish it would stop now. Best wishes to you as you recover from the treatment.