I have been on Venclexta for about 2 months and am about to do my 3rd round of Rituxan next week. Though I’ve had a few hiccups, they side effects seemed to be manageable. It’s the mouth sores and lower jaw pain that have been so difficult to manage. I’ve tried salt water w/ baking soda rinses, orajel, & prevention mouth rinse . It is not teeth pain. I’m told It may be (seasonal) allergy related, possibly from Venclexta or Lupus/another autoimmune issue, based on prior ANA & labs. I was asked to stop the Venclexta for a month, repeat the PET scan at month end and will review labs & scan next visit. The pharmacist called in to a compounding pharmacy to make “Magic Mouthwash.” I hope this works! Had anyone tried this or been down this path?
I’ve just used it, and my mouth is tingling & tongue is numb. I hope it works.
This situation raises another question - when I restart Venclexta, will I start at 400mg? It was a little tough getting to that point. I can’t image starting there. Any thoughts?
Hiccups give me anxiety. I welcome your thoughts and advice based on your experiences.
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I’m on Watch and Wait and taking no medication but I’ve had mouth sores and swollen jaw, and lips since Christmas. I have no dental problems. I phoned my link nurse for CLL who told me it was not related to CLL and to go to my GP. I was then referred for mouth cancer checks. Thankfully and mercifully none was detected but I still have the problem. It was suggested that I might have something called burning mouth syndrome but the diagnosis doesn’t fit exactly. I was offered no treatments. I have found some relief from a product called Bioextra mouthwash which I purchased on the net. It is a very gentle protective mouthwash. I’ve also used Gengigel first aid which has helped with the pain. I really sympathise with you as I know what discomfort you must be in. At one point I sat at the dinner table in tears because I really couldn’t eat. I’ve been having a lot of soft food and smoothies. The good news is that it is very gradually improving and I can at least eat more comfortably.
Thursday45, did your gp check to see if you have thrush? I've gotten it several times from strong antibiotics. My Dr gave me Nyastin to use. It's a liquid you swooz in your mouth and swallow.
I feel for you! I've had lots of mouth sores this year, in my case linked to neutropenia - I've come to see it as an early warning sign that my neutrophils are dropping.
I was prescribed Difflam (benzydamine hydrochloride) mouthwash. I liked this as it doesn't taste too bad and does have a genuinely soothing/analgesic effect.
Ah. That’s interesting. Both my WBC and neutrophils are always on the low side. I do labs today, do I will find out soon.
The “magic mouthwash” I’ve been given has nystatin, lidocaine, Benadryl and sucralfate. Im still hopeful it will work. I’m wondering if my jaw hurts from clenching my teeth from the sores?
Are you on acyclovir or equivalent? If not you should be. That was the solution to my mouth sores, which went undiagnosed for months. It was like an oral presentation of shingles.
Yes. I have been on Acyclovir since this past December. I am also on Bactrim, an antibiotic, 3x a week. I’m finding the new “Magic Mouthwash “ is proving to be a very temporary fix. I’m told Rituxan should be helping. I’ll let you know on Tuesday. Fingers crossed!
Thanks for your assistance. I can definitely feel how this might feel like an oral presentation of shingles.
I've had mouth sores and what worked for me was Nystatin in a liquid form. I'ts Nystatin 1000000U SUS MO QTY 180 (typed this as it was on the label of my Rx) You just swish it around in your mouth and either spit it out or swallow it. Works for me, doesn't taste bad.
I’m happy you found a product that works. The magic mouth wash they prescribed contains nystatin, though I’m not sure if the dosage. Bonus it disentangle taste bad.
Thank you for your contribution and I wish you well in your journey.
I had been off the Venclexta for about 1 1/2 years when I started dry mouth syndrome and my tongue is somewhat swollen - I take pilocarpine to increase the saliva in my mouth and I take valacyclovir (an antiviral) to help with my mouth sores
I’ve read a lot of responses and it seems a firm of acyclovir is the standard. My question is if one can stop with taking it. Is this a lifer drug?
I’m not experienced with meds. I know with antibiotics you can develop an immunity where they are no longer effective and the “super bugs” become immune to antibiotics. Do antivirals work the same way?
I’m really hoping to one day be off all meds. I hope we all get that opportunity.
Are your platelets low? Sometimes people get mouth sores when platelets dip. Rituxan affects platelets somewhat preferentially, so, wonder if this will go away when you no longer are taking it. Hopefully this is a temporary thing
Yes. My platelets are hovering on the bottom scale of a “normal “ range. My neutrophils and lymphocytes are just below “normal “ ranges. My WBC are below the “normal” ranges. Interesting, my other numbers look pretty good. Actually the best they’ve looked in a long time. This is the first time I’m not anemic and my iron levels are back in normal ranges. I guess the good news is the treatment is working! Bummer we have to deal with these nasty sores, but it could be worse. Much worse.
Thank you! I appreciate your contribution to this situation and wish you well on your journey.
When I first began treatment (with Ibbrutinib) 9 years ago I had horrible mouth sores until I stopped IB for a couple weeks and took valcyclovir daily and the sores cleared up and resumed IB treatment and continued taking valcyclover daily. A couple years ago, the mouthsores reappeared and I was prescribed Magic Mouthwash, but I had an allergic to it and was told to simply rinse my mouth several times per day with warm salt water while continuing to take valcyclovir. The mouth sores cleared up in about a week. Through this latest bout with mout sores I continued taking ibrutinib and valcyclovir daily.
I had mouth sores ( red blood -canker like) sores when I was on Imbruvica. They went away in 24-48 hours. When I switched to Venclexta, I no longer get them.
Sorry you are suffering with mouth sores and jaw pain. I had the prescription "Magic Mouthwash" but the lidocaine made my entire mouth numb and I would bite my cheeks and just didn't like that feeling when the discomfort was sore specific. My home remedy "Magic Mouthwash" from my onc/hem is 1/3 hydrogen peroxide, 1/3 baking soda, and 1/3 warm water - swish in your mouth/gargle 2-3 x daily. You mentioned baking soda mouthwashes but not one with hydrogen peroxide and that might be the ingredient that makes the difference. Hope you get some relief.
As I mentioned earlier, I use 2 parts baking soda and 1 part table salt, which clears my mouth sores in 1-3 days. But the key may be that I rinse twice, morning and night, every day for 5 years. I use rinse whether I have month sores or not. Blessings.
I’m so glad this works for you. It’s definitely a more cost effective approach, too.
I tried this for a few days, through out the day as my mouth was in bad shape. I didn’t have quite the same results, but will try again once I get these under control.
I appreciate your help! It’s really nice to have a tribe!
Blessings and best of luck to you on your journey.
my wife was diagnosed with Lung cancer. she used an over the counter mouth rinse Colgate peroxyl, during her four rounds of chemo+Keytruda. she didn't have any problems with mouth sores. she would rinse after every meal.
Hi, I am on wait and watch. Last month, I got one sore on the inside of my lower lip and it isn't healing fully. It's just one very tiny sore, which heals and then comes back at the same spot. I've been to a dentist, who says it's just a recurring canker sore and there's no particular treatment for it.
I even got it checked by my haematologist, he gave me some bcomplex capsules. As long as I'm taking them, it's under control. Once I stop, it flares up, and becomes uncomfortable for a day or two and heals . And comes back again in 2,3 days at the same spot.
I tried everything from home remedies to medicated mouth rinses. Nothing is helping. I will get it checked again this month.
Sorry to hear about the mouth sores. I’m on Venetoclax as well. Mouth sores can be a common side affect. I’ve had a few but I don’t think it has been associated with the medication. I’ve followed the same regiment to try and heal them quicker. I don’t have any excellent suggestions just hoping they discover something that gives you relief.
Taking a break from Venclexta & magic mouthwash & salt water rinses have helped to rid them. I suspect they’ll return when I return to Venclexta, but fir now I’ll take the win.
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