jack14 Posted November 29, 2020 Author Share Posted November 29, 2020 22 hours ago, Deb W said: Hi Jack, I haven't experienced the mouth sores, but my tongue stings a lot - all day, every day. I've gotten used to it. it's annoying, but I don't have pain like you are experiencing. I'm glad you've found something that works. I am right with you on the constipation, but I think you will find that after the second treatment of Keytruda alone - meaning after about six weeks, it might go away. That has been my experience. I used to take 2 stool softeners daily for almost the entire time since starting the triplet. I will say that since I don't have to take steroids and anti nausea meds I went back to my pre-cancer regimen which is a probiotic daily. But, if you are still having Alimta infusions the constipation might continue. Oh, and I also have a red rash that appears on my face just below my eyes - it starts at about 5pm every day and it's gone the next day. My dermatologist prescribed a cream. Also, my eyes were watering constantly so i use a warm compress 2 times a day - and the optometrist prescribed a steroid for my eyes. We've gotta be tough, right? Hi Deb I sure do agree with that, we do need to be tough alright. So sorry that you are having those isues, hopefully they will resolve sooner than later. Unfortunately for me, I have had more trouble with mouth sores over the last few weeks. They moved out to a small spot on my lower lip, and after a couple of days extended all the way across my lower lip. The blister like lesions crust over and seep and bleed easily. They are very tender and make eating difficult. I lost a few pounds and the other day at my pre infusion weigh in, the doc said she was somewhat concerned and would be rechecking later to see if it continued. I didn't think about my not eating as much lately, due to the soreness and my hesitancy in getting the bleeding going again. I also didn't mention the lip thing to her either. I know I should have, but I didn't want to chance her cancelling my treatment. Anyway, she didn't look at my mouth this time and we're all wearing masks in there so.... I got my infusion and I left. I also continue to increasingly suffer those dang mouth sores inside my cheeks and they too bleed easily now, when scraped by something rough that I might eat and when I brush my teeth. I am only on Keytruda and haven't ever had chemo either, although I have come close to going on it a couple of times. Anyway, getting more concerned and desperate, I began thinking back to when they began, to try aand find a connection, and then I remembered switching from Zantac 150 for my stomach to 20 mg of Prilosec daily about that time. So, I looked up side effects for Prilosec and lo and behold, "crusty bleeding sores on lips and sores in mouth". I did a bit more research and learned that the proton pump inhibitors like Prilosec, are also known to contribute to chronic constipation. So I am stopping the Prilosec to see. I guess I should ask my PCP about tapering off as there are some mentions of that.... Anyway, I am praying that's it. PS, I also want to ask my Oncologist about maybe taking a probiotic like you take because I am wondering whether my gut bacteria is healthy or not. I have heard, like I believe you alluded to, that some of the probiotics may not be suitable for some folks who are on immunotherapy. Take care and stay safe, and thanks for your help. Link to comment Share on other sites More sharing options...
jack14 Posted November 29, 2020 Author Share Posted November 29, 2020 Well, I stoped the Omeprazole (Prilosec) today.Hopefully I will see an end to this oral curse and without a resurgence of gastric issues. Link to comment Share on other sites More sharing options...
Sabacat Posted November 29, 2020 Share Posted November 29, 2020 I hope so!!! That sounds truly awful. Oddly, I have been on 60mg Dexilant, a strong PPI, for about 8 years due to Barrett’s esophagus and have never experienced that side effect. Maybe a different drug would give you relief without the side effects. Please let us know if it clears up. Will be thinking of you! Link to comment Share on other sites More sharing options...
jack14 Posted November 29, 2020 Author Share Posted November 29, 2020 3 hours ago, Sabacat said: I hope so!!! That sounds truly awful. Oddly, I have been on 60mg Dexilant, a strong PPI, for about 8 years due to Barrett’s esophagus and have never experienced that side effect. Maybe a different drug would give you relief without the side effects. Please let us know if it clears up. Will be thinking of you! Thank you so much. I might ask about that Dexilant. Link to comment Share on other sites More sharing options...
Sabacat Posted November 30, 2020 Share Posted November 30, 2020 It IS expensive if not covered on your drug plan. I get it from Canada. Link to comment Share on other sites More sharing options...
Jennedy Posted November 30, 2020 Share Posted November 30, 2020 I was on Dexilant for years. I've been on Nexium for the last year or so -esomeprosole is the generic. Try that. I've been doing well on that. I admit I need liquid Mylanta occasionally because of the steroids. Link to comment Share on other sites More sharing options...
DMaddox Posted November 11, 2021 Share Posted November 11, 2021 On 11/28/2020 at 7:38 PM, Deb W said: Also, my eyes were watering constantly so i use a warm compress 2 times a day - and the optometrist prescribed a steroid for my eyes. We've gotta be tough, right? Deb W - I would be interested in hearing more about your eye issues and if they continued, got worse, or slowly went away. I have been on Keytruda since June and have 1.5 years more to go. Uveitis is a known side effect of Keytruda but I have not been diagnosed with that, as of yet. However, my eyes water constantly. I work in front of a computer for hours each day with tears streaming down my face. I have to literally peel my eyes open every morning. By week 3 after chemo/immuno, my eyes are nearly swollen halfway shut and then the day before I go for chemo again, miraculously, it is gone like it never happened. I literally took pictures in the last time to show the docs and they couldn't believe it. Told me to take Zyrtec 2-3 days before I expected the systems to start (based on previous pattern). Well, after this last infusion, the eye watering started immediately and so I've taken Zyrtec every single day. Hasn't seemed to stop any of this but does seem to help somewhat. I should do the compress thing but is warm the way to go? I'd be interested in hearing more about your eye side effects and how you've been doing over the past year with that. Thank you. Link to comment Share on other sites More sharing options...
Deb W Posted November 12, 2021 Share Posted November 12, 2021 Hi 😧 I am sorry you're having this experience. It was so annoying. I stopped wearing eye makeup altogether during that time. I ended up having to stop Keytruda after 7 months because it caused colitis. I noticed my eyes to clear up within 4 weeks of stopping the drug. The opthamologist gave me a steroid for my eyes, but you can't really stay on that for an extended period of time. I was told to use a cool compress. I never went back to Keytruda. I tried a targeted therapy in April and had an allergic reaction. I ended up having 3 weeks of radiation for 3 mediastinal lymph nodes. I will know on 11/18 whether it worked. All the best to you. By the way, the Keytruda worked on me, but I just can't take the side effects. Link to comment Share on other sites More sharing options...
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