Log in
SHARE Metastatic Breast Cancer
2,590 members2,083 posts

Sometimes cold sores drive me up the wall

I have been on Afinitor and Exemestane for a couple months and herbal supplements for alternative treatment. I have developed cold sores in my mouth. I have used all the usual over the counter things to help with the discomfort. Doc gave me a liquid compound that has banophen, masanti and lidocaine in it. This helps too. Let me know if anyone has any other suggestions. Cold sores are one of the side effects of taking treatments, it sucks but hopefully the treatment will be effective.

14 Replies
oldestnewest

So I just started Afinitor this month. I have mouth sores, nausea, low potassium, very tired. Losing weight. Does it get better? If doctor tells me markers are going down I will have to put up with it.

Reply

It did get better for me so much I felt it was not working. I had Doxil for 6 months, went to 123 and felt tired all the time, then three months into it I felt more normal. I will tell you Pantoprazole 20mg has worked way more than the others. My ca 2729 went from 817 to 413 last visit. It has stayed there for almost a year now. Hang in there, it will get better. How many times do you get your markers done? And which ones do you get? I’m sorry you have hit this bump in the road, it sucks I know. Positive thoughts coming your way...

2 likes
Reply

I get marker done every month. CA27 and 35.

Reply

I’m starting on Wednesday. I only started the exastamene a couple of days ago. I got the mouthwash med, it says 4 times per day. I have seen several posts where they have the dosage reduced.

I think my onc is aware that this combo might be tough for some. She was very specific in telling me if the side effects were not tolerable to call her. Can’t say she had said that before...

Reply

What is the name of the mouth wash? I will see my doctor Thursday and ask for something.

Reply

Dexamerhasone .5 mg at 4 times daily

Reply

Hi Susie

I have always suffered from cold sores

Tried everything but bought a device called ‘viralite’..it’s an infra red pulsing machine..you aim it at the cold sore and the timer is for 3 minutes ...it will stop the cold sore from developing..even works after the sore has been there for a few days

You can get online or in major pharmacies

Hope this helps

Barb xx

2 likes
Reply

Thank you

Reply

I started suffering from severe cold sores around 4 years before my cancer was diagnosed, my doctor prescribes aciclovir - an antiviral. I find it very effective. I have a maintenance dose of 200mg tablet a day but when I have an outbreak (when I forget to take the tablet) this goes up to 5 x 400mg tablets a day for 5 days. Outbreak is usually gone after 3 days.

I get them in and around my mouth, on my chin, on my upper lip, in my nose and in my eyes.

Incidentally they went after treatment for breast cancer and only came back last autumn when the mbc would have been developing.

1 like
Reply

Hi, Susie!

My regimen has been:

Rinse 30 seconds with Plax.

Brush thoroughly with Arm & Hammer PeroxiCare toothpaste.

Rinse 30 seconds with Listerine Zero Alcohol.

Works like a charm, morning and evening!! GOOD LUCK 🍀 👍 Linda

PS All products available on Amazon.

1 like
Reply

If the sores are inside your mouth —as on your tongue, try Moisyn, a newly approved product that helped me. While its primary use is for dry mouth, a slight change in the formulation makes it work for mouth sores related to chemo. (The fda approval is on the way.) You can order online at Prisnya.com. (Try promotion “freemist”. ). Get on their mailing list so you’ll know when the next product is approved (I’ve used it on a trial). It works really well!

1 like
Reply

I don't know if Lysine supplements are an issue while taking these cancer drugs but I do know Lysine really helps people who have issues with the herpes virus (which is what the cold sore is) so if your doc allows it that may be something else to try. Lysine generally helps the immune system stay strong. I sometimes get cold sores if I'm really run down and about to get sick and have felt Lysine helps nip it in the bud.

Reply

Lysine is my cure too. I take tablets when I feel them coming, and medicated lysine lip balm when they are already out.

Reply

When I was on those drugs and one other, they gave me a prescription mouthwash which really didn't help. My sores were inside my mouth. Are yours more like a cold sore on your lips? I used an essential oil from DoTerra called OnGuard once when I felt a cold sore coming on my lip. It did seem to help.

Reply

You may also like...