Hello, I'm on my 11th day on Imbruvica and am starting to see what looks like blood blisters in my mouth. They started happening a few days ago and are getting progressively worse. Has anyone experienced this condition and if so, what did you do to eliminate this condition. I have been washing my mouth out with Listerine and now salt water. I have this question into my Oncologist now.
Thanks
Good to have the call into doc. That is on the list for use to call the doc.
Eww Listerine seems harsh. Hmm Baking soda in water. Tsp per glass or half a glass. I guess you were thinking Listerine would kill any pathogens which does make sense. Maybe alternate Listerine and baking soda water.
Sorry that you have this,
Linda
I had them in the beginning starting imbruvica and then once in awhile. Please don’t use listerine as it is way too harsh. A teaspoon of baking soda in water helps and gets rid of them fairly quickly.
Sounds like mouth sores. There are several remedies, your doctor can rx a special mouth wash, eat 2 brazil nuts daily or suck on a sugar free Ricola lemon mint cough drop. Also use one drop oil of oregano on tooth brush DON'T swallow but can swish around (found that kinda harsh).
I tried them most of them except mouth wash because it was never ready when I went to pick it up. I take the 2 brazil nuts, I was taking them before, eat only 2 they also can have side effects. Sometimes I still get one or two mouth sores.
I also cut back on citrus fruits? I like lemons.
Maybe the sores get better over time since I don't get them very often, I am in my 4th month.
Hi I had blood blisters and mouth ulcers at the start of ibrutinib. I used difflam products. You can get mouthwash, gel and lozenges. Mine passed after a short while, with the odd one appearing occasionally but less severe.
Good luck
Ann
benadryl +mylanta (or baking soda ) +nistatine suspension ,all mixed together equal parts
I used baking soda and water to rinse my mouth. They disappeared in a couple of months. I still get a few popping up every now and then, but nothing like the first time. At night I used mouthwash for dry mouth and found it soothing.
I had the "blood blisters" too. They would come/go, lasting about 3 days start to finish. My dentist insisted I was "biting my cheek" in my sleep and I needed to buy a mouth guard. I did not. Baking soda dissolved in water and gargled is the better treatment. They didn't hurt and since they went away on their own, no treatment was actually needed. They totally disappeared when I went off Ibrutinib after 3 years on it.
Hydrogen peroxide rinsing worked for me to manage the mouth sores that appeared in my first 6 months on imbrutinib.
Some of your responses refer to mouth sores, however, I think you are talking about blood blisters, there is no pain just you notice a bubble effect with your tongue and when you check it out there is a nice little blood blister..... yes, I have had them and found them to last only a couple of days. Usually I would have two or three at a time...I just assumed it was my body adjusting to the Imbruvica. I have now been on Imbruvica for six months and I haven’t had any in well over a month. I did use a mild baking soda rinse and just tried to ignore them. My dentist also told me I was biting myself at night....well, I knew better. Good that you have a call into your doctor but I have a feeling this is just a passing thing. I have also used a hydrogen peroxide rinse especially if one broke while I was brushing my teeth.
Let us all know what your doctor tells you....we learn by sharing.
🙏😍💕☘️
Hi. Haven’t had a mouth sore for a month and wow am I happy about that ! I am 6 months into Imbruvica and 4 mo on Venetoclax. Not sure why they have stopped. I started using a Clorhexidine mouthwash 2x a day. I also put a drop of Oil of Oregano on my toothbrush and brushed and flossed every time I ate. Sometimes the sores were so bad I had to use Lidocaine Viscous on them so I could eat. I also used Biotene oral rinse and that was soothing. Good luck to you on the mouth sores......they are painful
Oh. If u use Chlorhexidine ONLY use when sores are present. It felt so good I continued to use it and it really stained my teeth but a good dental cleaning erased that. Take care.
Hi oso7672,
I also had blood blisters when I started my trial at Mayo’s in April of Ibrutinib & Gazyva. I attributed it to my low platelet count. They gradually disappeared as my platelet count increased.
The mouth is a very vascular part of the body so it is easily traumatized.
Having practiced Dentistry for 45 years, here is what I would recommend.
* Floss at least once/day
* If you are using a manual toothbrush throw it away. I suggest getting a Sonicare toothbrush.
* Get a Water Pik & use it twice/day (morning & night). If you decide to get one, let me know as there are some do’s & don’t’s when using it.
* A good mouthwash is Smart Mouth. Not sure if it is sold outside the USA. I would use
this sparingly as it is Zinc ion activated and I am not sure if Zinc interferes with absorption of Ibrutinib. (Zinc will help with faster healing of mouth lesions). Best to check with your CLL physician first. It is an excellent mouthwash.
* Lastly, if you are not taking Zovirax as a prophylactic to help prevent Herpes Zoster (Shingles) & other viral infections, I would check with your physician to see if she/he wants you on it. May save dealing with a lot of mouth ulcers.
Remember a healthy mouth is a happy mouth.
Varney, DDS
It seems I get the blisters in my mouth about 2 hours after I take the Imbruvica and they come in a swarm. I rinse, sleep and they subside the next day but don't go away. How long does this happen.
I really think the blood blisters are associated with your platelet and erythrocyte counts. At least mine were. As my counts started to get better those blisters disappeared. I am not sure if this is the case with you since I don’t know your numbers. If your numbers are good, then I don’t have answer.
V
I get the red blood mouth sores on occasion also. They last 24-48 hours. I just let them alone and they go away by themselves however, some larger ones start bleeding out of my mouth. I just rinse with salt water.
Oregano oil on my tooth brush worked great. I put 1 or 2 drops then rinse a bit since it it strong. They went away after about 1 week.
Be well,
Hoffy
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