painful tongue

[Orangesand]

My partner is on Ibrutinib and Venetoclax and has developed painful red sores and cuts on his tongue. It makes eating difficult and he has lost some appetite. Has anyone had a similar experience and what, if anything, have you done about it?

[lankisterguy Administrator Volunteer]

Hi Orangesand,

We have has 146 past postings that mention mouth sores here: healthunlocked.com/cllsuppo...

I expect you will find many suggestions including a remedy called "Magic Mouthwash"

Len

[Orangesand in reply to lankisterguy]

Thank you! Is the magic mouthwash homemade? Is it salt and water?

[lankisterguy Administrator Volunteer in reply to Orangesand]

Magic mouthwash is the term given to a prescription solution used to treat mouth sores caused by some forms of chemotherapy and radiation therapy.

What are the 5 ingredients in magic mouthwash?

Magic Mouthwash Recipe 1

50 mL viscous lidocaine 2%

50 mL Mylanta.

50 mL diphenhydramine (Benadryl) at 12.5 mg per 5 ml elixir.

50 mL nystatin (100,000U per 5 mL) suspension.

50 mL prednisolone at 15mg per 5ml solution.

50 mL distilled water.

Magic mouthwash" is a generic term for a prescription mouth rinse that is compounded by pharmacies to address specific oral health needs, particularly for patients undergoing cancer treatments.

Common Uses:

Oral mucositis: A common side effect of chemotherapy and radiation therapy, causing severe inflammation and sores in the mouth.

Oral thrush: A fungal infection in the mouth.

Oral pain: Relieving pain caused by infections or other conditions.

Ingredients:

The specific ingredients can vary, but common components include:

Antihistamines: (e.g., diphenhydramine) to reduce inflammation and itching.

Antacids: (e.g., Maalox) to coat the mouth and soothe pain.

Anesthetics: (e.g., lidocaine) to numb the mouth and reduce pain.

Antifungals: (e.g., nystatin) to treat or prevent fungal infections.

Antibiotics: (in some cases) to address bacterial infections.

Corticosteroids: (in some cases) to reduce inflammation.

How it works:

The combination of ingredients in magic mouthwash helps to:

Reduce inflammation and pain.

Kill bacteria and fungi.

Coat the mouth and soothe sores.

Important Considerations:

Not a one-size-fits-all solution: The composition of magic mouthwash can vary depending on the individual's needs and the underlying condition.

Consult a healthcare professional: Always discuss the use of magic mouthwash with your doctor or dentist before starting treatment.

Potential side effects: Like any medication, magic mouthwash can have side effects, so it's important to be aware of them and discuss any concerns with your doctor.

Not a substitute for other treatments: Magic mouthwash is often used to manage symptoms while other treatments are being used to address the underlying cause of the oral problems.

I've heard that "magic mouthwash" might help with mouth sores from chemotherapy. What is it? Magic mouthwash: Mayo Clinic

mayoclinic.org/tests-proced...

Answer From Karthik Giridhar, M.D.

Magic mouthwash is the term given to a solution used to treat mouth sores caused by some forms of chemotherapy and radiation therapy.

Mouth sores (oral mucositis) can be extremely painful and can result in an inability to eat, speak or swallow.

Magic mouthwash doesn't have a standard formula, but it usually contains at least three of these basic ingredients:

An antihistamine or anticholinergic agent, which may help relieve pain

A local anesthetic to reduce pain and discomfort

An antacid that helps ensure the other ingredients adequately coat the inside of your mouth

An antifungal to reduce fungal growth

A corticosteroid to treat inflammation

An antibiotic to kill bacteria around the sore

Most formulations of magic mouthwash are intended to be used every four to six hours, and to be held in your mouth for one to two minutes before being either spit out or swallowed. It's recommended that you don't eat or drink for 30 minutes after using magic mouthwash so that the medicine has time to produce an effect.

Side effects of magic mouthwash may include problems with taste, a burning or tingling sensation in the mouth, drowsiness, constipation, diarrhea, and nausea.

Magic mouthwash may provide some relief, but it's unclear how effective it is. Studies of magic mouthwash have had conflicting results. Some have found no benefit. One recent study found that it was better at relieving pain than was a flavored water mouthwash for mouth sores in people receiving radiation to the head and neck.

Since there isn't a standard formula for the solution, it's hard to draw conclusions across the studies. Some medical organizations don't recommend magic mouthwash because there isn't enough evidence that it works.

There are several versions of magic mouthwash. Some are available in pre-measured kits that can be mixed together by pharmacists, while others are prepared to order by a pharmacist. If it's determined that magic mouthwash might be helpful, your doctor will write a prescription.

Talk with your doctor about your specific cancer treatments and which solutions for coping with mouth sores might be best for you.

Len

[Orangesand in reply to Orangesand]

Oh wow! Thank you for all your help! Very grateful.

[007laura]

This is exactly what happened to me. I also had a sore red tongue.It was like blister I also lost some of my taste For a while

[Orangesand in reply to 007laura]

Thank you Laura.

[opal11uk]

Sounds very unpleasant and I would suggest you ask your medical team for advice or the Pharmacist

[Orangesand in reply to opal11uk]

Thank you Opal.

[ncosto]

I experienced mouth sores while on ibrutinib (as well as serious dermatologic issues). An oncologic dermatologist prescribed a paste to apply to the sores in the mouth. It took about 10 days before they cleared up.

[Orangesand in reply to ncosto]

Thanks ncosto! Useful.

[Skimom]

Look up lysine. I have had very few cancer sores since I started taking it. Ask for viscous lidocaine to treat your current sores. A dab with a qtip works well to numb it up. triple mix also works well gargled. Really the Lysine has been a game changer for me. I take it daily for prevention.. ordered it on Amazon.

Diana

[Orangesand in reply to Skimom]

Thanks so much — very helpful!

[BigDee]

Hello Orangesand

I have been using 2 parts baking Soda to 1 part Table Salt, one teaspoon in cup of water. I do this morning and night the suggestion of my chemo infusion team. I typically get over my mouth sores and cuts in 2-3 days, then if done regularly will produce faster healing. Blessings.

[Orangesand in reply to BigDee]

Thanks so much — very helpful!

[michaeledward]

I experienced mouth sores when I first began treatment with ibrutinib. I was was prescribed valcyclovir and that resolved the problem. However, I had to continue the valcyclovir daily ever since inasmuch as I am still taking ibrutinib.

[Orangesand in reply to michaeledward]

Thanks so much for your reply.