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05-10-2011, 02:27 PM
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#1
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Senior Member
Join Date: Aug 2007
Location: Newport Beach, CA
Posts: 161
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Frankly Speaking: Sex After Breast Cancer
From moisturizers and lubricants to decreased libido and UTI's, this talk was informative and may be helpful to many of you.
Frankly Speaking: Sex After Breast Cancer
2011-03-17
Speaker: Susan Kellogg-Spadt, CRNP, PhD
http://lbbc.org/Event-Archive/2011-0...-Breast-Cancer
Downloading the transcript and reading it that way was excellent and the speaker offers some outstanding information that is both healthy and tested.
Hope you enjoy!
__________________
Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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05-10-2011, 03:32 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Frankly Speaking: Sex After Breast Cancer
Thanks for posting Vic!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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02-29-2012, 04:53 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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Re: Frankly Speaking: Sex After Breast Cancer
Vic,
Thank you for posting this link to the podcast and script. this is the most "frank" and comprehensive coverage of the matter that I have ever heard
I wish I would have heard it a year ago
xoxo
Maria (mcs)
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02-29-2012, 05:48 PM
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#4
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Frankly Speaking: Sex After Breast Cancer
Thanks very much for posting.
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03-02-2012, 03:09 PM
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#5
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Frankly Speaking: Sex After Breast Cancer
There are so many things I knew nothing about until I read this. Sex education is a lifelong endeavor, isn't it?
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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03-03-2012, 02:25 PM
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#6
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Frankly Speaking: Sex After Breast Cancer
I enjoyed this article, and learned of some treatment options I was not previously aware of. However, there are some discondances between the ingredients that Dr. Kellog-Spadt recommends we avoid and the ingredients in the products she recommends. I have spent some time on-line at drugstore.com and in actual drug stores this morning reading the product labels, and this is what I found:
1. In her discussion of vibrators, she says to avoid products containing parabens. However, most of the lubricants and moisturizers she recommends contain parapbens: Slipperly Stuff, Wet, Astroglide (Natural) [although drugstore.com lists a different, paraben-free Astroglide], Replens and Me Again.
2. She specifically says to avoid moisturizers with Glycerin, however, one of her top choices, KY Liquibeads, contains glycerin.
While parabens are estrogenic, glycerin is not, so I am not sure why she says to avoid it unless it interferes with moisturizing.
What she liked about Me Again was the ingredient hyaluronic acid, which I found is available as a vitamin supplement, though I could not find it in a lotion.
I am going to try her remaining suggestions, and will post if I find anything that is really remarkable.
Read your labels!
Hopeful
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03-03-2012, 03:06 PM
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#7
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Frankly Speaking: Sex After Breast Cancer
Hopeful,
Thanks for doing the detective work!
I bought a lubricant that was recommended by the hospital, only to find it has parabens.
On that same subject, I went to a special class called "look good, feel better" at the hospital. They gave me a whole bunch of makeup, most of which has parabens in it.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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03-04-2012, 11:50 AM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Frankly Speaking: Sex After Breast Cancer
Amy,
I was surprised, because it certainly sounded like the doctor was familiar with the ingredients when she discussed them. That is why I wanted to post what I found.
For the record, I am not anti-estrogens altogether. With my medical team's consent, I have used Estrace cream for VA, which worked very well. However, I think that once the atrophy is dealt with initially, there should be some way to maintain the cellular integrity that does not involve hormonal preparations. At least with the Estrace (and similar products like vagifem and e-string), the production is regulated, and when I use it, I know what the dosage is. With estrogenic compounds like parabens, there is no way to know the relative strength of the compounds and how much estrogen-like substances you are using, because there is no regulation of it and no standardized dosing. I would rather use the real thing, when I know what I am getting, than guess about these other preparations.
Hopeful
Last edited by Hopeful; 03-04-2012 at 11:53 AM..
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