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Old 06-30-2010, 10:52 AM   #1
Pam P
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mouth sores

The xeloda is causing my mouth to be really sore. I can't see any white spots or any break down in tissue, but the insides of my cheeks, roof of mouth, sides of tongue, and gums are really irritated. I'm having trouble eating, brushing teeth, etc.

I read about ideas on previous posts. I've bought Tom's of Maine toothpaste - that is painful too. I've also got the biotene rinse and have a script for magic mouth wash. The magic wash(maalox, lydocaine, benedryl) helps a little but the maalox stuff is not pleasant. I'm also trying baking soda & warm water. Also taking ibuprofin. The onc. nurse said they could prescribe vicodin for pain, but that seems like over kill at this point. I've also read a post on mycelex trouche and may ask for a script for that.

Any other tricks and suggestions would be appreciated. Thanks. Pam
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
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2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
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Old 06-30-2010, 01:08 PM   #2
BonnieR
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Re: mouth sores

Don't have alot to offer regarding the pain. Sympathy, of course. I did use the magic mouthwash at one point during tx.
I was going to suggest that you try drinking some nourishment. Ensure and the like. Liquid yogurt. Non acidic juices. Using a straw.
I am so sorry you have to go through this. Keep the faith
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Bilateral mastectomy, (NED on left) May 2007
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Old 06-30-2010, 02:14 PM   #3
CourtneyL
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Re: mouth sores

Pam - one thing that worked for me for both mouth sores and GI issues when I was on Xeloda was buying L-Glutamine in a powder form. Mixing it with a little juice in the morning and gurgling it around in my mouth a few times before swallowing. Hope you find something to help. Avoiding spicy foods can also lessen the pain.
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April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
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Old 06-30-2010, 03:11 PM   #4
Mary Anne in TX
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Re: mouth sores

Pam, warm salt water did as well for me as all the other stuff. I had to gargle it about every hour, but I knew it wouldn't do me any harm. Good luck, ma
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Old 06-30-2010, 05:03 PM   #5
Midwest Alice
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Re: mouth sores

I don't have any other ideas for you Pam, but just wanted to say I love your new picture. Very cute
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Old 06-30-2010, 07:26 PM   #6
PinkGirl
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Re: mouth sores


Hi Pam

I used warm salt water ... tons of it ... like maybe 10 times per day.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
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Old 07-01-2010, 11:24 AM   #7
Jackie07
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Re: mouth sores

Pam,

I was prescribed the same stuff when I had mouth sores. The only suggestion I have is to eat very plain, soft food. Rice soup (lot of water cooked with half cup of rice) is easy to chew and digest. It supplies energy (starch) and fluid. You can also add some sweet patato in the soup to get more fiber and taste.
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Old 07-01-2010, 10:02 PM   #8
Catherine
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Re: mouth sores

Pam,

I think you already know most of the tricks. It sure seems like the simple remedies do help. Baking soda and warm water. How wonderful that others remember just how often they administrated the simple remedies. Wishing you well as you get through all of this treatment and discomfort. Keep the faith, we are with you.

Hugs, Catherne
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
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33 rads after the surgery
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Old 07-02-2010, 10:47 AM   #9
schoolteacher
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Re: mouth sores

Pam,

Hope your mouth is better today.

Amelia
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Old 07-03-2010, 02:27 PM   #10
anne2
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Re: mouth sores

Hi Pam,
Try finding a dentist with a laser. They can soothe your sores with the laser and they heal very quickly.
www.waterlase.com. Otherwise you can try diluted peroxyl mouthrinses you can get in the pharmacy. Hope you feel better.
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Old 07-03-2010, 03:29 PM   #11
flynny
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Re: mouth sores

I used the "magic mouthwash" and I would gargle with salt water several times a day. They suck, that's all I can say. I used to get 4-5 at a time. When I get them now, I get about 3. I don't know why that is but it is annoying! I also used the Biotene toothpaste. That worked ok.
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Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
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Old 07-03-2010, 03:41 PM   #12
Pam P
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Re: mouth sores

Thanks for all of your suggestions! My mouth feels a little better today. I am off xeloda now for a week and suspect it will get better with the chemo rest and then get worse again when I get mid way through the xeloda days again. I hadn't been using the remedies as often during the day as some of you said so I will step it up.

I am trying to eat the bland and liquid things that will go down easily and also be satisfying. Of course what I really want is something chewy, tasty, and a bit spicy! Oh well.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 07-07-2010, 08:11 PM   #13
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Re: mouth sores

Absolutely LOVE your cute photo and sweet face! I am always thinking about you and praying for you, Pam. I hope your mouth feels better!

Maureen
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IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
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Old 07-08-2010, 12:12 AM   #14
harrie
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Re: mouth sores

Besides Biotene, there is Rembrandt (the one which says it is for cold sore sufferers).
Stay away from any toothpaste product with sodium laurel sulfate as it will further aggrevate the situation. That ingredient is actually the foaming agent and is not necessary for the oral hygiene.
Stay away from mouthrinses with alcohol.
Good luck. Hope you feel better.
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1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 07-08-2010, 02:05 AM   #15
Ellie F
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Re: mouth sores

Hi Pam
Love the hair, you look great.
Have you tried rinsing your mouth with manuka honey in a little warm water?
Ellie
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Old 09-25-2020, 05:56 PM   #16
mamacze
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Re: mouth sores

Hi Pam,
I had many many mouth sores early in my treatment course and know first hand just how miserable they can be. My oncologist had me try a prescription mouth rinse called Caphasol. It worked immediately - sores healed within 3-4 days. My health insurance covered it. I highly recommend. You'll see it if you Google it - urge your oncologist to let you give it a try. Good luck, I hope you find some respite.
Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 09-25-2020, 10:27 PM   #17
donocco
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Re: mouth sores

Before you can see a doctor and get a prescription Mouthwash, you can buy Maalox and Diphenhydramine elixir over the counter. Get a prescription plastic bottle from the pharmacist and make a solution ( suspension) equal parts of the Maalox and Diphenhydramine liquid ( Benadryl). Shake well and use as a mouthwash. The acts in the body as an anti-histamine but acts locally as an anesthetic. This may give some relief. If you swallow this the Diphenhydramine can cause drowsiness
\ Paul
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