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Old 06-02-2012, 11:34 AM   #1
Nguyen
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What to do with mouthsore from everolimus

Hello,

Does anyone have any suggestion for what to do about mouth sores, particularly from everolimus (afinitor)?

Many thanks,

Nguyen

Linda's treatment history:
05/2012 - current: Herceptin, Exemestane, Everolimus, Zometa
08/2011 - 5/2012: Herceptin, Tykerb, Femara Zometa
08/2010 - 08/2011: Herceptin, Femara, Zometa
09-2009 - 08/2010: Herceptin and estradiol
09/2008 - 09/2009: Herceptin, Fulvestrant, Femara
03/2008 - 09/2008: Herceptin, Exemestane, Oophorectomy
01/2005 - 03/2008: Herceptin (readded) and Femara
07/2004: It returned again via several small nodules in the lung
10/2002: NED (via CT and CA27.29)!
10/2001 - 01/2005: Femara, (Fosamax)
12/2000 - 10/2001: Herceptin and Navelbine
12/2000: lung metastatic was diagnosed (a few small nodules)
02/1998 - 12/2000: Daily Tamoxifen
05/1997 - 04/1998: Modified Radical Mastectomy, many many cycles of chemo regiments (CAF,Taxol, Carpoplatin, Thiotepa, Navelbine, Taxotere), including HDC, and radiation
05/1997: First diagnosed with BC stage 3A, ER+, PR+, HER2 +, poorly differetiated, nuclear grade 3.
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Old 06-02-2012, 02:58 PM   #2
tricia keegan
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Re: What to do with mouthsore from everolimus

My Onc gave me Nystatin but some of my friends are in the trial for this med so will check with them!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 06-02-2012, 05:23 PM   #3
Nguyen
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Re: What to do with mouthsore from everolimus

Has anyone try gargle with a mixture of baking soda and water? Thanks again.

Nguyen
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Old 06-02-2012, 07:39 PM   #4
Mandamoo
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Re: What to do with mouthsore from everolimus

Nguyen - how many tabs are you taking? My ulcers ended me up in hospital - I was neutropenia also. When my neutropenia cleared the throat ulcers improved dramatically I also reduced to 1 tab a day which helped although I always had an ulcer somewhere. When they were really bad I gargles with Difflam throat gargle. I also washed my mouth frequently thoughout the day with warm salty water. At night I used Kenalog in orabase paste on the ulcers an still do when they appear. I also did accupuncture and took Chinese herbs for mouth ulcers.
These are Australian trawnts but there would be similar US treatments.
Good luck.
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January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
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Old 06-03-2012, 04:01 PM   #5
tricia keegan
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Re: What to do with mouthsore from everolimus

One of my friends tried Baking soda and found it good!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 06-04-2012, 02:26 PM   #6
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Re: What to do with mouthsore from everolimus

Ask your doctor if a prescription of the 'Magic Mouth Wash' is in order:

http://her2support.org/vbulletin/sho...gic+mouth+wash
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Old 06-08-2012, 06:28 AM   #7
Meems67
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Re: What to do with mouthsore from everolimus

My 11 year old son has been in an Everolimus drug study for almost two years as part of his regime to fight a dangerous, benign brain tumour. The Hospital for Sick Children in Toronto gave him a mouth rinse to use as his mouth sores got very bad. They call it HSC Mouthwash and it is a pharmacist prepared concoction of straight lidocaine and cherry Kool Aid (to make it taste better). My son could not tolerate it at first because after he used it as a mouth rinse, his entire mouth would be numb and he could not eat or enjoy the taste of his food that way either...so, we figured out the best way for us was to spot treat the sores. We dip a Q-tip into the solution and let it drip directly on the sore and then rub more around the sore. It freezes the area for about an hour of comfort and we reapply as needed. It is more than enough time to eat and at the end of the day lets him fall asleep without fighting mouth pain. It has worked for us. He also rinses twice a day with a baking soda and water solution. Brushing his teeth is a challenge with the sores so we opted for a higher fluoride toothpaste called Prevident, so when we can successfully brush he's getting better fluoride protection. Fluoride bothers some peoples sores so a higher content may not be for everyone. I hope this helps you. It is a terrible side effect so I really hope you get some relief. Good Luck!
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Old 06-09-2012, 12:28 AM   #8
harrie
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Re: What to do with mouthsore from everolimus

First of all, Nystatin is for a fungal infection, and not necessarily for the ulcerations. In order to prevent the occurance of more ulcers, you can use Biotene products, which will be much easier on the mouth. You can also use Rembrant FOR CANKER SORE SUFFERERS. (Rembt has quite a line of toothpastes, so be sure to look for the right one) Stay away from spicy or very acidic foods which may also influence getting ulcers.
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1993: right side DCIS, lumpectomy, rads
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2007:
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finished 1 yr herceptin 05/07
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