 |
07-07-2014, 12:58 AM
|
#1
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
terrible mouth sore on Taxcotere, Herceptin and Perjeta
Hello,
In our cancer support group there is a woman on Taxotere, Herceptin and Perjeta who has terrible mouth sores and she's very thin. the bicarbonate mouth wash doesn't help her. Any ideas? She really can't lose more weight. She is taking liquid protein but still her mouth is extremely sore. This is a recurrence. 1st time around was 10 years ago.
thanks sarah
__________________
|
|
|
|
07-07-2014, 04:10 AM
|
#2
|
|
Senior Member
Join Date: Oct 2012
Posts: 645
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
Hi, I used biotene ( not sure if it's available in Europe ). Also had a prescription for "'magic mouthwash"). If you google it, you can see the formulation. As I recall, it was lidocaine, and 2 other ingredients.
http://www.mayoclinic.org/tests-proc...h/faq-20058071
I also had a prescription for lozenges that would treat any bacteria lurking I. The mouth. Never had to use them, the mouthwash was really effective
Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
|
|
|
|
|
07-07-2014, 09:09 AM
|
#3
|
|
Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
1 pkg of cherry flavored kool aid in 2000 ml of water do not add sugar. Keep kool aid in fridge
Mix 100 ml of kool aid with 100 ml of xylocaine viscous 2% (lidocaine) and 100 ml of nistat suspension (nystatin) 300 ml total
Shake well exp date 3 mos from prep time at room temp.
Standard directions - shake well, swish and spit, or swish and swallow - 1 tbsp 15 ml) 4 times daily.
Hope this helps.
The hospital is princess Margaret in Toronto (pharmacy) ph: 416-946-6593
__________________
PinkGirl
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
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
|
|
|
|
|
07-07-2014, 09:37 AM
|
#4
|
|
Senior Member
Join Date: Oct 2012
Posts: 645
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
Yep - that was it!
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
|
|
|
|
|
07-07-2014, 10:18 AM
|
#5
|
|
Member
Join Date: Feb 2014
Location: New York
Posts: 6
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
I hope her mouth sores resolve quickly - they're awful. I had them during my first round of TCH, but sucked on ice chips during the tax infusion for the following five rounds and never saw them again.
__________________
Diagnosed 1/24/14
Lumpectomy/SNB 2/10/14
T1cN0M0 Grade 2, 1.2cm
ER+(15%)/PR-/HER2+++
TCHx6 3/12/14 - 6/25/14
|
|
|
|
|
07-07-2014, 10:53 AM
|
#6
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
Hello,
many thanks for your replies, I'll pass this info along
thanks
sarah
__________________
|
|
|
|
|
07-07-2014, 04:44 PM
|
#7
|
|
Senior Member
Join Date: Aug 2013
Location: Texas
Posts: 61
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
I was not on that exact treatment regimen but my Onc told me to rinse with water, 1tsp of salt and 1 tsp of baking soda a few times a day. I never really did get mouth sores. Once I felt them coming on I would increase the amount of times I rinsed to every 2 hours and that did the trick. I pray something works for her. Mouth sores are horrible.
__________________
Lovemyboy3
6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.
11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.
11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/
16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
|
|
|
|
|
07-07-2014, 04:47 PM
|
#8
|
|
Senior Member
Join Date: Feb 2009
Location: Canada
Posts: 128
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
Really important to change toothbrushes every 2-3 weeks while on chemo.
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced
I have heard there are troubles of more than one kind
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
|
|
|
|
|
07-08-2014, 04:30 AM
|
#9
|
|
Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
Another possible cause could be food sensitivities. Or allergy to dental materials. I used to have problems with that years before my breastcancer. If the magic mouthwash doesn't help, she could look into that. Also, a stronger anti fungal might do the trick. Nystatin doesn't always cut it.
Jacqueline
__________________
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.
|
|
|
|
|
07-16-2014, 09:30 PM
|
#10
|
|
Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
|
Re: terrible mouth sore on Taxcotere, Herceptin and Perjeta
Caphosol - prescription mouth rinse works like magic for me. I have been plagued with mouth sores for 6 years and they can be debilitating. When I started this daily mouth rinse they disappeared within days.
Here is a link:
http://caphosol.jazzpharma.com
I know how terrible it is to live with them - I hope you find an antidote that works.
__________________
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!
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 08:25 AM.
|
Linear Mode
