Imbruvica-Mouth Sores

[Wahoowa]

I started Imbruvica 420 mg a month ago. I am having a real problem with mouth sores. Anybody else?

[Jooby59]

Try Oil of Oregano. Couple of drops on your toothbrush or in water as a mouthwash. It works for me. Good luck.

[Wahoowa in reply to Jooby59]

thx

[Hoffy in reply to Jooby59]

It worked great for me,

Mark

[cajunjeff]

I hope they are tolerable for you. I had a few mouth sores early on with ibrutinib, not too bad. I think mouth sores are one of the side effects of ibrutinib that can fade over time.

I used biotin mouthwash, a moisturizing wash that doesn’t contain alcohol. It helped some. As with many ibrutinib side effects I think the strategy is to first do our best to treat the symptoms and see if the side effects are tolerable for us and if they improve with time.

If at some point the side effects are not tolerable then the options become pausing Ibrutinib and restarting, trying a lower dose or switching to an alternative like acalabrutinib. I hope you can work through them. I would definitely let my doctor know about the sores.

[Wahoowa in reply to cajunjeff]

thx

[country76]

I eat 2 brazil nuts daily. Crushed so I don't break any teeth.

[Wahoowa in reply to country76]

thx

[starsafta]

Be aware that Brazil nuts are very high in selenium. Too much selenium can have negative consequences. You might want to be aware of suggested maximum levels of daily intake of selenium, and the consequences of ingesting excess amounts, which are spelled out here: ods.od.nih.gov/factsheets/S...

I found that taking two a day brought on some of the side effects. Particularly if you intend to take it long term, you might educate yourself and decide whether you want to continue eating two of them on a daily basis.

The reason I use Organic Oil of Oregano on the toothpaste squeezed onto my toothbrush for mouth sores is that there are no side effects, except for mild tingling on the tongue for a few seconds.

[Wahoowa in reply to starsafta]

thx

[country76 in reply to starsafta]

Thanks, I heard about selenium from the Dr. Oz show stating only taking 2 a day because more could be toxic. I read from a post on this website regarding the link to prevent mouth sores. I primarily eat a non dairy and vegitarian diet however others may not.

I having been eating 2 Brazil nuts daily since I found out I had CLL, although sometimes I forget. My hair and nail problem has been recent, probably from Ibrutinib compounded by hypothyroidism.

I had my thyroid removed in 2005 as part of the treatment for thyroid cancer. Last year I was told that the cancer was cured and drawing a blood test for TSH & T4 was only neccessary once a year instead of twice. However this would be the year it was off and if it was done last summer it may have been caught. Sometime this last year my TSH and T4 elevated, which started contributing to my hair problems. My thyroid meds have recently been raised to take care of that. I am hoping that will help my hair.

[Toothdoctor]

There is a prescription medication called kenalog orobase that might help. It is a little bit of a steroid

I would ask your oncologist

Best regards

DLC DDS

[Wahoowa in reply to Toothdoctor]

thx

[starsafta in reply to Toothdoctor]

Why do a steroid that has potential side effects when there is a natural remedy? Doctors only consider pharmaceuticals and no little about alternatives.

[Handley]

Hi Wahoowa - I took Ibrutinib for a couple of months (long story) and was told to use Corsodyl as a prophylactic against mouth sores (corsodyl.co.uk/products/mou... ). I don't know which country you are in, but the oncology/haematology units here at my nhs hospital recommend it for their cancer patients on therapy, and who are vulnerable to mouth sores. It certainly worked for me and I had no bother whatever. Maybe Chlorhexidine Gluconate 0.2% is sold as something else in USA. Anyway, use it twice per day AFTER thoroughly cleaning teeth. Nobody will tell you that and if you don't, your teeth will stain!

I believe this will help and do let me know. I'm really surprised that you haven't had advice about this. I get really frustrated over UNNECESSARY suffering!

Anyway, if your mouth is very sore, I'd have thought the last thing you want would be to be munching on Brasil nuts! Good luck!

Handley

[Wahoowa in reply to Handley]

thx

[UKfulloflife]

Hi - I had dreadful mouth sores to the point that I couldn't eat, lost a ton of weight and ended having to stop taking the pills. I was prescribed a special mouthwash and all sorts of other things, including oral morphine, but nothing really helped and they were concerned that the problem may replicate itself inside the body. Hence having to stop the medication. I've now had 18 months with no treatment. The Imbruvica had done such a good job that my bloods were great for months. Now looking at some sort of treatment in the next couple of months, but what I'm saying is - it's not the end of the world if you end up having to stop the pills. Hope all goes well for you.

[Wahoowa in reply to UKfulloflife]

thx

[jdolinger]

There is a lot written about this in other posts. Look for related topics for mouth sores. I had a similar situation and my Hematologist prescribed "Magic Mouthwash". healthline.com/health/magic... Alos just google magic mouthwash and you will see many articles for to. It help a lot.

[Wahoowa in reply to jdolinger]

thx

[lankisterguy Volunteer]

Hi Wahoowa,

-

The replies above are excellent, if you want much more info from past similar discussions please look for a box on this page labeled: Related Posts

*Awful mouth sores, lip blister from Imbruvica

*Mouth sores on Imbruvica

*Mouth sores and sick!

*Imbruvica and sores

*Mouth ulcers (canker sores)

-

On computer screens it is in the upper right column, on mobile devices scroll way below.

-

Len

[Wahoowa in reply to lankisterguy]

thx

[larrymarion]

i had terrible mouth sore problem after starting imbruvica--i lost 20 pounds in 4 weeks since i couldn't eat. i first triedmagic mouthwash and other suggested solutions for weeks, but they didn't help a lot. my hemoc did throat culture and found cocksackie virus. treated with 8 gamma globulin infusions, which worked quickly and completely. If your mouth sores persist, get worse or otherwise impair your life, discuss getting GG infusions with your doc. Note that some insurance plans won't cover gg infusions unless you fight for them.

[Wahoowa in reply to larrymarion]

thx

[Doggoneit101]

I had mouth soars also when I took Imbruvica. I got a script for magic mouthwash from my oncologist. That side effect did get better with time. Keeping you in my thoughts 🙏

[Wahoowa in reply to Doggoneit101]

thx

[Wcsailor]

I had the mouth sores also and used 50/50 water and peroxide as a mouth rinse. I swished

it around for 1 min then spit it out. Worked great ! I did it on my own so I don’t know what the doctor would say . I saw results pretty fast