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Old 12-04-2009, 04:15 PM   #1
vlcarr
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Toothpaste Advice

Can anyone recommend a good toothpaste that won't burn my mouth? I'm using Sensodyne but it still burns my tongue when the mouth issues start after chemo.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 12-04-2009, 04:42 PM   #2
cafe1084
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Re: Toothpaste Advice

When your tongue and mouth begin to burn and develop sores, have your MD call you in a mycelex troche to combat oral thrush. The only toothpaste I found that did not burn my mouth was peridex paste and rinse. There may be something new out since I had chemo, but without the troche and the rinse, I don't know what I would have done. You will be in my thoughts and Good Luck!
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Old 12-04-2009, 05:51 PM   #3
chrisy
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Re: Toothpaste Advice

I used Tom's of Maine - it was very gentle and I actually still use it now! I also use Biotene mouthwash, it has no alcohol and is very soothing. (Biotene also makes toothpaste but I was unimpressed with it).
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 12-05-2009, 03:37 PM   #4
naturaleigh
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Re: Toothpaste Advice

Baking Soda!! My dentist just recommend Baking Soda as the safest and best toothpaste to use. The Dental Hygentist just did a two year study on toothpaste and she was shocked at how much toxins were in a tube of paste.

Also, try L-Lysing for your mouth soars.
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Anita

er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 12-05-2009, 03:40 PM   #5
Lien
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Re: Toothpaste Advice

I haven't had chemo, but I've had oral sore problems because of allergies. Baking soda worked miracles for me.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 12-05-2009, 10:28 PM   #6
micheleu
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Re: Toothpaste Advice

Vicky,
Im not positive but I think Biotene might have a toothpaste now. I still use Biotene mouthwash 6 years out! My mouth still gets very dry and i can't use many other toothpastes either without them burning.
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Michele Ulmer

Dx.2003 Stage 3b 35 pos nodes

Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED

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Old 12-06-2009, 12:41 AM   #7
sarah
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Re: Toothpaste Advice

Hello,
You should use a mouth wash up to 6 times a day - biocarbonate - ask the chemo nurse, pharmacy or doctor about it. I used during chemo and it prevented mouth sores.
good luck
hugs and love sarah
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Old 12-06-2009, 04:28 AM   #8
Ellie F
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Re: Toothpaste Advice

Hi
During my second encounter with chemo I used a toothpaste made from bee propolis. it was just brilliant and meant I never got a sore mouth or an infection.
Ellie
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Old 12-06-2009, 05:57 AM   #9
yankeebikachic
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Re: Toothpaste Advice

I used Crest Pro Health and had no problems. The mouthwash works good too, no burning!
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4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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Old 12-06-2009, 01:05 PM   #10
vlcarr
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Re: Toothpaste Advice

Thank you all for your advice. I have a mouth rinse called Prevention and I have the magic mouthwash script from the onc. My mouth is much better today. What I found with this 3rd round was when I brushed my teeth my tongue felt like it was on fire. Not my mouth, just my tongue.

I also use baking soda & salt with warm water and that seems to really help. I had not experienced the tongue issues until this 3rd round.

Thanks again. I've had a rough week and a half but feeling better today!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 12-06-2009, 01:29 PM   #11
DianaT
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Re: Toothpaste Advice

I used (still do) the Toms of Maine to brush twice a day and baking soda with hydrogen peroxide at night.
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Old 12-06-2009, 04:43 PM   #12
vlcarr
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Re: Toothpaste Advice

I meant to ask about where to get Toms of Maine and bee propolis? I've never heard of that.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 12-06-2009, 04:46 PM   #13
DianaT
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Re: Toothpaste Advice

Toms of Maine I get at HEB but I think that is only in TX. I am in OH on business and say it at Meijers. In the health food aisles, near the organic lotions/soaps.
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Old 12-06-2009, 09:13 PM   #14
naturaleigh
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Re: Toothpaste Advice

Vicky,

I have used baking soda with salt for years, until my dentist told me to quit using the salt. The salt takes the enamel off your teeth.

Try just using the baking soda. The hardest thing to do it to put the baking soda on your teeth, but once you start brushing, it is not too bad.

Also, if you have a health food store, they usually sell Toms and I have also seen it at Walmart
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Anita

er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 12-07-2009, 12:50 AM   #15
harrie
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Re: Toothpaste Advice

Vicky, what causes most of the burning sensation in toothpastes is this ingredient called sodium laurel sulfate. It is the foaming agent and also found in shampoos and prob other products. It is not a necessary ingredient for good oral hyg.
Anyways, the toothpastes i would recommend would be the toothpaste made by Biotene. Also, Rembrandt has a line called "for canker sore sufferers". Both of these should be tolerable for your mouth and it will also lessen the chances of getting a canker sore.
Stay away from the toothpastes that are for whitening, or tartar control.
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*** MARYANNE *** aka HARRIECANARIE

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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