Ibrance and mouth blisters

[JBirdnut]

Hello all. I have been on Ibrance and arimedex since Jan 1 2018. All was great till day 17, then mouth sores began. On day 19, my Oncologist saw me, prescribed Magic Mouth Wash, sent me to infusion for fluids(dehydrated) and steroids. Treatment helped, finished Ibrance to day 21.

Oncologist then lowered dose from 125 to 100mg. Worked great for 3 months, but on 4 month, day 19, a blister on my tongue....very painful and difficult to eat or drink. Have been doing baking soda/ salt mixture at the first sign of the blister. Using Magic Mouth Wash also. I have even tried putting Zilactin right on the blister but doesn't really help.

I read where two women used frankincense oil. Anyone else tried it?

Janine

[JBirdnut]

Hi Tri78. It is a mouthwash that you get with a prescription from your doctor. The label reads "The Most Magical Mouthwash". It is compounded at the pharmacy as directed by the doctor. I have mine filled at CVS, and with insurance I pay $42 for a pint sized bottle. It is not a cure, but relieves the pain.

[kkrouse in reply to JBirdnut]

Preventing them works best, hence washing with baking soda a lot.

[Buffwright]

I have a mouthwash that works well but isn’t yet out of clinical trials. When the FDA approves it, i’ll Post it here.

[psailsbery]

I have battled mouth sores and have found baby Orajel rubbed directly on the sore(s) to be helpful as it numbs the area. basically the same as Magic Mouth Rinse but easier to use when out and about. Also, be careful with what you eat and drink as anything with too much acid will irritate the sores.

[Hock15]

Hi got got mouth sores also. I started at 125 than my Dr. put on 100 and that helped but do to my blood counts he put me on 75 anyway I use Forever young oil called Theives and it is the best stuff. It shortened the time I had them and also always got them on my tongue.

youngliving.com/en_US

[Joan37]

Perhaps you can check further into getting a mouthwash such as that mentioned by Dr. Rugo in the SWISH trial. She is a breast cancer oncologist.

onclive.com/onclive-tv/dr-r...

[JBirdnut in reply to Joan37]

I will ask my oncologist. Seeing her this Tuesday. From the video, it appears that the Mouthwash is an excellent preventative. I did not stay vigilant on doing the baking soda/ salt mixture on a daily basis. I felt so good that I thought I didn't need to follow the regiment. Wrong!!

Thanks!

[Joan37]

We oftentimes don't stay vigilant when we feel good!

[suzesunshine]

I bought capsules, on Amazon, and put Ibrance in there. No more sores

[kkrouse]

I start the baking soda mouthwash a week before sores usually show up. It helps. Many blisters go away overnight, before they become open and painful. Use it 4-5 times a day, every time I drink water. Really helps.

[JBirdnut in reply to kkrouse]

Yes, I must use the baking soda/salt mixture as instructed. I went almost 4 months with no blisters, so I got complacent. Paying the price now. Ugh!

[Imtired]

What is the baking soda/salt mixture for cancer sores?

[JBirdnut in reply to Imtired]

1/2 tsp of salt, 1/2tsp baking soda in a cup of water. Stir till disolved. Swish in your mouth for about 15 seconds and spit out. Gargle with the solution if you can b4 spitting out. Repeat till you have emptied the cup.

The instructions I received said to do this at least 4 times a day. I got complacent with the regiment and now am dealing with the blisters. I am not sure if this is the reason for the blister outbreak or if the Ibrance is too strong (100mg). Will find out when I see the oncologist on Tuesday. I have just finished cycle 4 of the Ibrance.

[Woodthrush in reply to JBirdnut]

Salt and baking powder mouth rinse really helped with the mouth sores - they were gone in 2 days. Had tried Peroxol to no avail. I did a search on the site and was so grateful this string came up.

[Boysmom5]

I was on Ibrance/letrozole for 5 months and really only had trouble with sores for the first couple of months, but they were horrendous huge sores! I started rinsing with baking soda any time I started feeling tingling or scalded feeling in my mouth, and when a sore came up I put a dab of l-Lysine powder on the sore and took a dose internally as well. That routine seemed to get them in control for me and keep them away.

[JBirdnut in reply to Boysmom5]

So putting the Lysine powder on the blister healed it? The blisters(2) are on the side of my tongue and very painful. I have tried several remedies, but nothing is clearing them up, just numbs them for a little bit while.

[Boysmom5 in reply to JBirdnut]

I tried to keep the powder on the sore as long as possible, then swallowed it, too. Overnight they were much less painful, and they began healing more quickly than they had been up to that point. It does still take time, but the pain relief was enough to make it manageable.

[Boysmom5 in reply to Boysmom5]

Just to try to be clear, the powder *on* the sore helped with pain, it was taking it internally twice a day that also helped them heal.

[JBirdnut in reply to Boysmom5]

Okay, thanks. I went to the Vitamin Shoppe and purchased the powder and the liquid extract. Will try the powder first. Took one capsule on the way home!

[JBirdnut in reply to Boysmom5]

Hi. Have been putting the Lysine powder on the blisters since yesterday (5/20). I first seish for about a minute with the Magic Mouth Wash. Then I apply a dab of gentamicin sulfate ointment on the blister. This is good for lessons and also helps the Lysine powder stay on the blister longer....and hurt less when the powder is applied. I already feel some improvement. Thank you Boysmom5!

Saw my oncologist today. As I expected, she dropped me to 75 mg Ibrance.

Bottom line is I must be vigilant about doing the baking soda/ salt mixture tosboid these awful blisters!!

[Imtired]

Thank you! I hope I won't need it but will keep this handy.

[Cshipley123]

My doctor gave me a sample of “Gelclair”. It’s a gel that you mix with water to make it a rinse. It’s only at specialty pharmacies because it’s new and it’s really expensive. I paid nothing because I qualified for a zero copay. It really works! Within a day my sore felt better and I could eat again. The magic mouthwash only gave temporary relief. It’s definitely worth asking about.