Does anyone have experience with carafate?

[hillham]

I'm almost in the middle of radiation treatment (13 down 17 to go) and the esophagitis is beginning. Swallowing has become tricky, but the pain in my chest from reflux is worse. The doctor prescribed magic mouthwash and carafate. The carafate says to use 4x a day on an empty stomach. Can anyone who has experience with this medication offer advice?  Does it work? Thanks! K

[Judy M2]

I haven't heard of carafate and wish it had been prescribed for me when I had esophagitis. I actually had 4 pains at the time: constant esophageal pain, pain with swallowing, pain from reflux and occasional heart-attack level pain. When I was finally able to connect with palliative care, methadone worked very well, but I had to switch to a Fentanyl patch when I started Tagrisso. Esophagitis should heal at some point after radiation ends. Mine took months but I feel like I was extreme. Don't hesitate to get palliative care on board. 

[hillham]

Thanks Judy, I know you had a very hard time with esophagitis. Makes me hurt to think about your experience, but I'm so glad things cleared up. Your various posts have got me chanting PALLIATIVE CARE! So far, for me the worst is pain from reflux, at least I think that's what it is. A burning in my chest that comes and goes, especially after I've eaten. Ouch!!! I haven't tried the magic mouthwash yet, but the nurse told me to use it, even if swallowing isn't that bad because it has mylanta in it, which helps with the acid. 

[Sally Lash]

Yes I am on sucralfate, same as carafate. Started it when esophagitis reared it’s painful head. The GERD was worse for me also, the acid going all the way up my nose is like fire! They started with Sucralfate, which you put in water to dissolve and drink slowly before meals and before bed. Then added Pantoprazole and Famotidine, both twice a day. No magic mouthwash, wish they had. My radiation was also shorter. Do you dissolve Carafate? My esophagitis is almost healed and the GERD is getting better. I feel for you so much! It is sh#**y side effect for sure. Palliative care sounds like a promising option. Either road will be sending positive thoughts. 

[hillham]

Thanks so much Sally! I'm glad you are almost healed. What a thing to go through! I took the carafate yesterday for the first time. It seemed to work, which surprised me. It's a liquid, and I take two teaspoons full on an empty stomach. So far, I've only had one day with a lot of pain and it was after I ate lunch at a restaurant. That was when I kind of freaked out because I'd never felt anything like that before in my life. I called the doctor and he prescribed the carafate and the magic mouthwash (which I haven't tried yet) right away. I'm also taking a prescription antacid, which I think is helping.  I'm hoping I can control some of it with diet. Tomorrow I'll be half way through my radiation treatment, which feels good, but I realize that things could get worse.  

[Judy M2]

I also was prescribed pantoprazole and took it for several months. You do have to watch your diet. I eliminated dairy products and substituted mango sorbet and coconut ice cream, which were soothing. Obviously no crunchy, salty or spicy foods. Bland is best.  But even avocados killed me! The first time I had that heart-attack level pain I thought it was a heart attack, but it was just the acid reflux. I hope both of you get relief. It may not feel possible now, but I assure you it does get better. 

[hillham]

On 6/14/2021 at 7:44 PM, Judy M2 said:

I haven't heard of carafate and wish it had been prescribed for me when I had esophagitis. I actually had 4 pains at the time: constant esophageal pain, pain with swallowing, pain from reflux and occasional heart-attack level pain. When I was finally able to connect with palliative care, methadone worked very well, but I had to switch to a Fentanyl patch when I started Tagrisso. Esophagitis should heal at some point after radiation ends. Mine took months but I feel like I was extreme. Don't hesitate to get palliative care on board. 

Whoa! So I only have FOUR more radiation appointments out of 30, and I was getting cocky that I was going to sail through this part of treatment mostly pain free. However, beginning yesterday it really kicked in. I don't even know how to describe it. I can carefully sip water, and I can swallow my own saliva, but if I try to get anything else down, not only does it hurt my throat while I'm swallowing, but my middle back goes into absolute spasms of pain, and I'm left hunched over trying to trying to steel myself. The carafate doesn't help with this now. The doctor gave me oxycodone, 5mg. Fingers are crossed that it will help, but after 30 minutes I still can't swallow! 

I am really taken aback by this, even though I was warned about it over and over again. Respect for all of you who've been through this! 

K

 

 

[Judy M2]

Yes, I totally get it. Don't hesitate to contact palliative care. Your radiation oncologist can only prescribe oxy, which may not be enough. Get ahead of that pain or you can get dehydrated and/or deconditioned like I did. 

[TJM]

I'm still taking oxy for it and it works..mostly. A couple of months ago it suddenly got worse. I decided to double the oxy dosage (with more time in between) and it did the trick.

Looking like I will be getting another throat scope (not a technical term) soon. Docs want to get me off oxy..even tho it's at a very low dose (5mg is the lowest dose available. The pills go up to 100mg). I'm not worried about addiction at these levels. Funny thing is my NP is more worried about my low dose Xanex usage! I told her again yesterday that we will never agree on the xanax question (She has been on me about it for years). I actually told her I would switch providers if she insisted. She chuckled and said ok.I could care less if I'm addicted to xanax for the rest of my life. It also is low dosage.

This throat issue is why I reccomend NOT doing adjunctive radiation treatment. Sad thing is both my onc and rad onc were 50 50 on doing it. But the Engineer in me said do all possible treatments. I'd like to have a do over!

Also..it didnt show up until 75% thru the treatment schedule so I to thought I had made it thru.

Good luck

Peace

Tom

[hillham]

Thanks for your responses. I meet with the doctor today to discuss. It's ironic because I happen to currently be reading Empire of Pain, a tell all about the Sackler family and Oxycontin! It's a real page turner. 

Such a bummer because I was feeling so good, and was looking forward to going out for runs and enjoying two healthy weeks before my last chemo on July 16th. Now I'm in misery. I'm using the caliphate, which I drink straight before eating. I'm also taking pantoprozole for the acid in the mornings. And 5mg of oxycodone is clearly not working for me! A new pain even popped up in my ear. Not sure if that's related to the esophagitis or to the chemo. The one thing I'm focused on is staying hydrated per Judy's advice. Water isn't the most painful thing. 

 

[Tom Galli]

hillman,

Try melted ice cream or a bottled protein drink to ensure you are getting nutrients. I also experienced the crush of esophageal discomfort but earlier than you did. I relished the soothing feeling of melted ice cream.

I do hope things resolve quickly.

Stay the course.

Tom

 

[hillham]

Melted ice cream sounds excellent! 

Here's the update after meeting with the doctor today. The first thing is that I have thrush in my mouth (ick) which he said is probably also in the esophagus and could be causing extra pain. He checked my tongue for it almost as an afterthought, and I'm so glad he did. I had noticed that my mouth felt yucky, but my response was to just constantly brush my teeth. I never really looked closely at my mouth. Now I can easily see that I have it. I'm taking a pill for it for the next ten days. The second thing is that I finally got the magic mouthwash. I had low hopes for it, but it was indeed magic. I was able to down an ensure and eat a bowl of mashed potatoes like they were nothing. Yay. I'm feeling more hopeful that I can weather this now. THREE more radiation appointments.  

[LouT]

Good that your doctor caught that for you.  I hope the pills begin their job well before the ten days.  Stay strong as you are doing well.

Lou

[hillham]

I was hoping that this long weekend and break from radiation would give me some reprieve, but OUCH. This is what I've been taking:

• 1-2 oxycodone every 5-6 hours for pain.
• magic mouthwash just before I hurry and swallow food (most of the time I do this, but sometimes there isn't as much pain as at other times for reasons I don't understand)
• pantoprazole every morning for acid
• folic acid
• stool softeners (because of the oxy)
• carafate 3-4x a day to coat the throat. 
• fluconozole for thrush - 1 per day for ten days

 

Here is what I've been eating & drinking

• ensure
• spoonfulls of olive oil
• watermelon, watermelon and more watermelon! (this goes down the easiest of all!)
• pureed lentil soup with soft bread
• bland egg salad
• smoothies with flaxseed oil, mango & bananas, cut with either milk or oat milk
• 10 glasses of water every day (at least that's the goal)

Not sure if I wrote that out just for myself or if anyone would be interested in seeing it. I still have to go for three more radiation treatments, but then maybe the end will be in sight!

Good luck to all of us!

 

KH

[Judy M2]

Hillham, you are doing pretty well in my opinion. You're consuming way more than I could. I never had thrush but it's a fairly common side effect. Best of luck with your remaining treatments. You will start to feel better once it's all over. 

[hillham]

It does sound like I'm eating a lot of food when I look at my list! Thanks Judy, that's encouraging! 

[hillham]

I thought I'd give a little update about my esophagitis. It turns out that the pain I experienced above lasted about 7 days. Miraculously, only three to four days after completing my radiation I could swallow again, and didn't need any of the above medications except for the antacid! I was so surprised and happy about that. Since then, I've had my fourth and last chemo, which was on Friday 7/16, and today am feeling OK-- just a little queasy. Now I'll have a scan on 8/4, and the next decision is whether to begin taking entrectinib for my Ros-1 mutation immediately after. I am quite sure that I'll do this, but some oncologists (and Ros-1 specialists) seem to prefer to not use the targeted therapy in Stage 3 patients after initial treatment, as there isn't much data that it helps. I'm finding that there aren't many people like me. I'm pretty terrified of the side effects from the TKI, but more terrified of the cancer!  

[Judy M2]

@hillham, glad you're feeling better! The side effects of entrectinib do look daunting, but I assume you'll get an EKG and echocardiogram before starting on it. I hope you find the TKI tolerable and it does the job for you. You may want to post your experiences under the NSCLC Group/Lung Cancer Mutations/ROS1 heading here so it's easy for others to find. Fingers crossed for you. 

[Sally Lash]

Glad you’re feeling better! Try to enjoy the break from treatment. 

[hillham]

Thanks Sally, Funny, it's now four days past my last chemo and I'm feeling pretty good physically. I've been looking so forward to feeling good, but now it's the mental part messing with me - feeling so stressed about my first scans in two weeks, and then depressed about the uncertainty of everything, including the side effects of the TKI. But doing my best, like all of you!