Anyone know a super effective drug to prevent my mouth sore dilemma ? HELP !!!

[Catnap7]

Hi I am 8 mo into I and V trial for relapsed CLLers Good news so far...nodes down to normal and blood normal except Neutrophils slightly lower but only slightly

BMB scheduled for January Oncologist says it won’t be in there either I am very grateful for that. My problem is

I seem to have most side effects on the list from these drugs especially Ibrutrinib Mouth sores and mouth infection has been the VERY WORST

They are relentless !!!!

Every month there may be only 8 days that I have NO sores I am on 800 mg of Acyclovir daily and it doesn’t stop them Would it be

ok to do 1200 mg daily OR does anyone know of a more effective drug? Valycyclovir is just the same I know all the bandaids for mouth sores....have plenty experience there but how do I keep them from coming? There must be some drug that will stop them HELP !!!

Catnap7

[annmcgowan]

Don’t know if this helps you may have tried these? I use gengigel mouth was as a preventative and difflam during a flare up.

Good luck

Ann

[Catnap7 in reply to annmcgowan]

Thank you. I’ll check into these

[Jemorgen]

Baking soda rinse?

[Catnap7 in reply to Jemorgen]

Thanks Yes it’s soothing but really looking for something to stop it .

[Keepkicking]

Ask your doctor about having a compounding pharmacy make you some "magic mouthwash", or where I live it's called "Akabutu's mouthwash". You may or may not need a prescription, depending on where you live. It's great for calming inflammations of the mouth.

[Catnap7]

Yes. I have been using that for a while

The pharmacist told me how to make it

It is probably the best thing for taking care of the pain. I just need to find a

medication that keeps me from having the sores

Thank you for thinking of that

Catnap7

[Keepkicking in reply to Catnap7]

I was hoping the hydrocortisone and nystatin would have helped keep the sores to a minimum. That's too bad it didn't do the trick for you. Best of luck on finding a solution to this problem.🤞🤞

[Hidden]

I have just been diagnosed with CLL and have not had to undergo any treatments yet. However, from time to time, for other reasons, I have problems with mouth sores. I have found Salviathymol N Madaus, a homeopathic medicine (available over the counter and online in Germany) very helpful. It has also been very helpful as a gargle when I think I might be coming down with a cold, sore throat or sinus infection. Twenty drops in 100ml of water is the dose and can be used as a mouth wash or gargle. It could well be that the severity of your mouth sores are too extreme for this medication, but just thought I’d share. Good luck!

[blur81]

Hi. My husband is breaking out but not in his mouth yet. They look like sores or blisters that ooze We’ve had a few nurses ask us if it’s Pemphigus? It’s an autoimmune disorder. We are waiting for him to get blood work so they can determine what it is. Have your doctor or dermatologist check you for it. It’s a blood test and biopsy. They told us so far that his symptoms are either from a bug bite or a medication reaction after his call treatment but we’re not buying that. He’s super itchy and it makes him feel terrible. Good luck.

[bhayes84 in reply to blur81]

Is he on Ibrutinib?

[blur81 in reply to bhayes84]

Yes that was his first round of treatment along with the antibody his second round of treatment was rituximab After doing some research 5 to 15% of people that have leukemia or lymphoma can develop this He is 56 now and in remission as of January but has still continued to break out all over his body mostly his head but now it’s moving to his hand chest and legs

[bhayes84 in reply to blur81]

I had bad enough blistering on IB that I had to switch to Acalabrutinib which is much better. A dermatologist took a biopsy but could not determine what was causing the blisters.

[blur81 in reply to bhayes84]

The biopsies for my husband came back a bug bite or a medication reaction which we both know is not accurate that’s why you have to request bloodwork Because it’s rare a lot of people don’t know about it that’s why if you specifically ask your doctor to check for that it’s the only way you will find out

[Psalm22-3]

I know it sounds like using a rubber band to stop a tank, but hydrogen peroxide rinse has worked for me to put an end to some very painful oral outbreaks.

[wellingtonboot23]

This may not be of any use but felt it may be worth mentioning. I am in my twelfth month of Ibruitinib and like you have had mouth soreness. I haven't had mouth ulcers that much but very sore tongue, roof of the mouth,dry mouth and difficulty in keeping a fresh mouth! I have been on Oranurse unflavoured toothpaste for several months now,it was formulated for people on cancer therapy and is between £3 and£4 . My grandson who has a brace does suffer terribly with mouth ulcers and it helps him. I haven't been able to get it in Chemists but Amazon and e-bay have it . I have burnt mouth syndrome and have found anything with peppermint in it is definitely a no no. Hope you get some relief soon,take care .

[Hoffy]

I was on the same trial. For me no drugs for the mouth sores were needed. Oregano oil on my toothbrush for about a week solve the problem for me. Just one drop under toothpaste was all that I needed. Not too much because it is strong

Work for me in about a weeK.

Be well,

Hoffy

[papatom]

This might sound unbelievable but try Ricola thoat drops.. I have really bad mouth sores like every other month. By accident i discovered the Ricola Lemon Mint throat drops really work. Must be something in them that dulls the pain. Suck 1 - 2 every few hours. Gone in 4-5 days. Really gave me a lot of relief. My whole mouth gets covered with sores. I keep a bag handy at all times.

[mrsjsmith in reply to papatom]

Yes they are also good for a sore throat, but not that easy to find. X

[Catnap7]

Thanks I will try this and add to my arsenal