jack14 Posted August 30, 2020 Share Posted August 30, 2020 Hi everyone. I hope you are all feeling well and are in good spirits. For those who aren't, I wish you wellness and healing. I tried to find a thread in here about dealing with the more common and annoying side effects of Keytruda. I am dealing with joint and muscle aches and constipation almost daily. There are several remedies mentioned about dealing with those issues. But, I began having some increased soreness in my mouth (cheeks) over the past month I think it's Lichen Planus. Didn't find anything here about that though. Anyway, There is no bleeding, although I bet if I brushed it with my toothbrush it would. It's painfully annoying and I mentioned it to my Onc yesterday when I saw her and asked her about something called "Magic Mouthwash". She knows it well and said it is a special mixture that had Lidocaine, Mylanta, and Benadryl in it. It requires a prescription and she said she would be glad to write one for me. Well, she hasn't yet so I called and asked about getting something similar OTC. A pharm tech said that Mylanta and pediatric Benadryl syrup could be used. I got some and I also bought a bottle of Chloraseptic spray which has Phenol in it, which has a numbing effect similar to Lidocaine. I have perused the web to find out if I might could mix it with the Benadryl and Mylanta. Although I have found several variations of the Magic Mouthwash, none have any otc anesthetic for numbing though. I noticed in the "inactive ingredients" note on the label that there is some alcohol in the Chloraeptic. I wonder if that might be why noone has thought about using it? Perhaps it is a problem with the Benadryl? Do we have any Phamacists or techs in here that might know? For now I am using the Mylanta and Benadryl as a mix 1:1 gargle and the spray seperately as needed. Link to comment Share on other sites More sharing options...
Brenda F Posted August 30, 2020 Share Posted August 30, 2020 The magic mouthwash is really what you need. My husband has to use it for several months. He was unable to swallow due to radiation burn. The things you are putting together will not help with the pain due to alcohol. Link to comment Share on other sites More sharing options...
Brenda F Posted August 30, 2020 Share Posted August 30, 2020 Just now, Brenda F said: had Link to comment Share on other sites More sharing options...
jack14 Posted August 31, 2020 Author Share Posted August 31, 2020 Thanks Brenda, I am going to ask my PCP at the VA if she can get me some with the lidocaine. ps The three dots in the upper right corner of your post allows for editing. Take care. Link to comment Share on other sites More sharing options...
Robert A. Posted August 31, 2020 Share Posted August 31, 2020 When my wife was on Keytruda she had similar problems with constipation so she would take stool softeners and would start taking them a few days before her infusion. She also developed Thrush. Link to comment Share on other sites More sharing options...
jack14 Posted September 1, 2020 Author Share Posted September 1, 2020 Thanks Robert My Onc just advised me to take Miralax daily. Thrush sounds scary, what they do for that? Antibiotics? Link to comment Share on other sites More sharing options...
Sabacat Posted September 2, 2020 Share Posted September 2, 2020 Miralax is a great idea! I actually first learned about it when I had a elderly Siamese with megacolon. She was too old for surgery, so we had to be POSITIVE she would not get constipated, as she also had very bad reactions to previously necessary enemas. We started adding tiny scoops of Miralax to her food, along with additional water. It has no taste and she never knew it was there. It was, indeed, a miracle for her. We rescued her at age 11 and she lived to a month shy of 20 (and that had nothing to do with her megacolon, it was an inoperable tumor under her tongue). Since then, I have used it myself -- especially after surgery when it was critical to avoid post-op constipation. Everybody's different, but I generally used 1 teaspoon in my morning tea. You do need to be sure to consume enough fluid. All it does is pull fluid into your intestines so that things don't get dry and hard. If you don't have any fluid intake, it can't work. Otherwise, no side effects, no issues, no worries. Susan Link to comment Share on other sites More sharing options...
jack14 Posted September 2, 2020 Author Share Posted September 2, 2020 That's interesting Susan. I first became aware of it when our rescue kitty, Merlin, had problems with constipation and a vet advised the same thing that yours did. He ate it with his wet food no problem and it worked like a charm. Fortunately we didn't have to continue long because whatever it was, he got over it. Anyway, I knew I could take it but was concerned with the duration, as the label mentions a week.I asked the onc and she said take it everyday. So I am. Thanks, and I know you miss her. My mpm had a seal point that lived to 23. He was a good kitty too. Link to comment Share on other sites More sharing options...
Sabacat Posted September 3, 2020 Share Posted September 3, 2020 Glad to hear Merlin had a good experience with it. Hope he's doing well now! We do miss Saba a lot! She was a real problem child, both medically and purrsonality-wise, but very endearing. We had agreed long before that she would be the "last mohican." Andy just didn't want to go through the loss again. This is the first time we've been catless in 47 years (3 generations of Siamese). Our most recent male, Trajan (you know where that name came from 😉) was devastated when his lifelong companion died of mammary cancer, so we adopted Saba as she was near his age. They bonded eventually, but it was never like he and Maggie - she was his soulmate. We lost him in 2018 to kidney failure and Saba became an only child - which suited her just fine. I'm thankful now that we didn't adopt again since we're traveling back and forth so much to Duke for the foreseeable future - it wouldn't be a good situation. Link to comment Share on other sites More sharing options...
jack14 Posted September 5, 2020 Author Share Posted September 5, 2020 I totally understand that. We didn't want to go through the pain after loosing our beloved Killy dog of 16 years. Merlin just appeared one cold October afternoon, 15 years after Killy had gone over that rainbow bridge, when I had gone out back for the first time in a couple of months. He was a week old at best and his family had been destroyed. He looked up at me and begged for help. We planned on finding a home for him. Well the next day, that was it....he owned our hearts. PS I finally got the Magic Mouthwash and it is magic! I use it sparingly but it sure helps. Link to comment Share on other sites More sharing options...
Sabacat Posted September 5, 2020 Share Posted September 5, 2020 Amazing how quickly these furry little souls can get into our hearts, isn’t it? Merlin is a lucky boy! Great news on the magic mouthwash! I am just starting down the side effect road and waiting to see what’s in store for the rest of the week. Link to comment Share on other sites More sharing options...
jack14 Posted September 8, 2020 Author Share Posted September 8, 2020 Yes that is so true. I can't imagine life without him now. In fact, at the moment, I am fearing that something may have happened to one of the ferals. Galahad hasn't been here since Saturday night. I hate this worry....he has done this before and so have the other two. I just hate it. And I also hope that you don't have any more side effects. So far I have had the mouth stuff, aches and pains in my arms, hands, and shoulders. And chronic constipation...sigh But I have been managing to get by with occasional use of Tylenol, Miralax, Senna,Magnesium Citrate, and Magic Mouthwash. Link to comment Share on other sites More sharing options...
jack14 Posted September 8, 2020 Author Share Posted September 8, 2020 Never mind, he just showed up....whew Link to comment Share on other sites More sharing options...
Robert A. Posted September 8, 2020 Share Posted September 8, 2020 On 8/31/2020 at 10:25 PM, jack14 said: Thanks Robert My Onc just advised me to take Miralax daily. Thrush sounds scary, what they do for that? Antibiotics? Sorry Jack just saw your question, It went away on it's own. Link to comment Share on other sites More sharing options...
jack14 Posted September 9, 2020 Author Share Posted September 9, 2020 No prob. Glad to hear it cleared up on it's own. Link to comment Share on other sites More sharing options...
Sabacat Posted September 9, 2020 Share Posted September 9, 2020 I was told saltwater rinses. Just turned up with it today ☹️ Link to comment Share on other sites More sharing options...
Sabacat Posted September 9, 2020 Share Posted September 9, 2020 23 hours ago, jack14 said: Never mind, he just showed up....whew Great news!!! BTW, I thought I was told not to take Tylenol - I’m going to have to recheck that if you are able! It would be a big help sometimes. Link to comment Share on other sites More sharing options...
jack14 Posted September 9, 2020 Author Share Posted September 9, 2020 I don't have any liver issues. Perhaps, if your blood labs indicate a problem or if you have a met in the liver then Tylenol might be contraindicated. I use the salt water rinse too. https://www.mayoclinic.org/tests-procedures/liver-function-tests/about/pac-20394595 Regardless, definitely run it by your doc first. Link to comment Share on other sites More sharing options...
jack14 Posted September 9, 2020 Author Share Posted September 9, 2020 PS Be sure and avoid eating spicy or acidic stuff that might aggravate the lining too. Hate hearing that you are experiencing it now as well Susan. We'll get through this..... Link to comment Share on other sites More sharing options...
Sabacat Posted September 11, 2020 Share Posted September 11, 2020 We will, Jack!!!! As my husband used to say when he drug me around to watch rugby games in the freezing cold when I was MUCH MUCH younger .... "You gotta be tough!" 😁 Link to comment Share on other sites More sharing options...
Sabacat Posted September 11, 2020 Share Posted September 11, 2020 BTW, dentist ordered some kind of anti-fungal rinse for the thrush. Haven't picked it up yet, but will LYK when I get it how tasty it is. 😁🙄 Link to comment Share on other sites More sharing options...
Judy M2 Posted September 11, 2020 Share Posted September 11, 2020 Jack, when I had mouth sores from chemo, my chemo nurse gave me MuGard to use several times a day, and it worked great. I just swished it around my mouth--you can swallow it too, although it did not help my radiation-induced esophagitis. If you have thrush, your oncologist can prescribe an anti-fungal. Constipation is also a side effect of chemo. I found that Dulcolax or Miralax worked best. Hope you feel better soon. Link to comment Share on other sites More sharing options...
Sabacat Posted September 11, 2020 Share Posted September 11, 2020 Yes, Judy, I think you just missed our conversation about Miralax and cats 😁 It’s good stuff. My dentist just ordered the stuff for thrush - will pick it up today and hope it tastes better than her last suggestion! Link to comment Share on other sites More sharing options...
jack14 Posted September 12, 2020 Author Share Posted September 12, 2020 Well, I got the Magic Mouthwash from the VA today. Its called Dukes formula. This hasn't got any lidocaine in it, but has hydrocortisone, benadryl, and nystatin in it. Oh and I picked up a copy of my Oncologists notes today from the hospital. They are very impressive, in that they are so thorough and correct. I expected some errors to be honest. I guess the use of a transcriber has a lot to do with that. Link to comment Share on other sites More sharing options...
Deb W Posted November 29, 2020 Share Posted November 29, 2020 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? Link to comment Share on other sites More sharing options...
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