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Old 09-06-2011, 02:20 PM   #1
fullofbeans
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Join Date: Jan 2007
Location: UK
Posts: 617
Early menaupause and ER negative, what are my choices

Because sometimes when it rains it pours.. I am dealing with menaupause, hot flush but also mood issues (which is hard to distinguish with the challenge of treatments and effects), starting to have vaginal dryness..

I am assuming that low dose capcitabine or tykerb was not the source of it.

Anyhow I would welcome every of your tips to feel better as a woman, I expert HRT not a option however tempting..
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 09-07-2011, 05:43 PM   #2
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: Early menaupause and ER negative, what are my choices

Boy, FOB, that is the 50 million dollar question. Wish I had a good answer for you. The vaginal dryness is a very acute problem for many of us accompanied by atrophy and thinning of the vaginal tissues themselves. Combined it makes for an uncomfortable sex life. Some gals here like replens and it seems it is enough, not me. I have to use a tiny amount of Premarin (estrogen cream made from pregnant mare urine) to combat the atrophy. I am older than you, so I can go until I really need to employ it again, then I am forced to use it for relief. Because I am paranoid about the estrogen, I try to keep it to a minimum. Needless to say, I am blessed with a very patient and compassionate husband.

Many,many years ago when I was a teenager working in a nursing home there was one old lady who used to say, "my vagina hurts. Hey, my vagina hurts!" We used to think it odd and really quite amusing. I remember sniggering along with the rest of us young aides. Well, NOW I know what that poor old lady was complaining about!

Guess this is what I get for laughing at her....

Good luck, kiddo. Wish I had more helpful suggestions. I will be watching to see if anyone has any new ideas.
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Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 09-07-2011, 10:43 PM   #3
Trish
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Re: Early menaupause and ER negative, what are my choices

FOB I just use lubrication which works for me. How low a dose of Tykerb/Herceptin are you on? I am having big trouble with 3 capcitabine and 3 lapatanib. Do you have a lower dose than that?
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 09-08-2011, 06:28 AM   #4
Lauriesh
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Location: Lakeville, Minnesota
Posts: 199
Re: Early menaupause and ER negative, what are my choices

Hi, I use vaginal estrogen cream for the dryness. I used it before my reoocurrence, and because my liver mets were er/pr - , I continue to use it.




Laurie
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Old 09-08-2011, 06:51 AM   #5
snolan
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Location: El Paso ,Tx
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Re: Early menaupause and ER negative, what are my choices

I use replense, though I don't have to use it very often, seems to keep working for several days.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 09-22-2011, 11:12 AM   #6
yanyan
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Join Date: Apr 2011
Posts: 403
Re: Early menaupause and ER negative, what are my choices

I experienced the same thing after the 3rd chemo. Period stopped, hot flashes, sweating at night, dryness. Now that my period came back 2 months after the last chemo, everything seemed to have resolved. I read coconut oil helps with the dryness. I bought some from vitaminshoppe, they come in capsules. Hope this helps.
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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