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Old 05-20-2014, 07:43 AM   #1
Hopeful
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Research on Vaginal Dryness drug

There is a post in the diet and nutrition forum from a researcher asking for assistance from bc patients with vaginal dryness in conjunction with developing a non-hormonal treatment. Here is the link: http://her2support.org/vbulletin/sho...eferrerid=1173

It would be helpful if we could get the thread moved here with a sticky.

Hopeful
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Old 05-20-2014, 02:39 PM   #2
suzan w
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Re: Research on Vaginal Dryness drug

I just responded...worth a 20 min. conversation!!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 05-30-2014, 12:37 PM   #3
suzan w
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Re: Research on Vaginal Dryness drug

Just bumped this up. I had a phone call today from Holly...associated with this study. They are grad students committed to finding a treatment that works for vaginal dryness..
Now, I know that this subject has been brought up on this board numerous times ( at least once by yours truly!!!)
I am encouraging you to give these folks the benefit of your experiences. It is a quick...20 min phone call. They are very earnest in their quest to help women. The phone conversation can be as detailed as you are comfortable with!!
I know that it would sure be great to see some positive work in this area of our lives. You can personal message me if you have any ?'s
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 05-30-2014, 12:45 PM   #4
Hopeful
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Re: Research on Vaginal Dryness drug

I spoke with them also. They are very earnest, respectful, and committed. I felt very comfortable with them. They are in the very early stages of their R&D and want to make sure they are focused on what women want out of VA treatment. Worth your time - the call is on their dime.

Hopeful
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Old 06-03-2014, 10:36 AM   #5
msmanuf
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Re: Research on Vaginal Dryness drug

Hi,

I just responded to the survey. I can't wait to get the call. Yippee, what a wonderful project.
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Old 06-04-2014, 07:50 AM   #6
snolan
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Re: Research on Vaginal Dryness drug

I think I responded a while back to this link. They were very respectful and professional.
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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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