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Old 09-30-2007, 06:30 PM   #1
MCS
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Estrace, Vagivem, Etring, Premarin

Calling all users Caliing all users

Don't be shy or embarrased.

Been reading the other threads. Any changes?

I will be seen the gyn tomorrow to discuss. don't know what to do.

I really would like to use something "natural" to increase my libido and treat my dryness. any suggestions? other than gels, etc. have you tried the ky pills that you insert?

I'm just really scared of using any estradiol creams. I'm hesitant to provoke anything, even though I'm er/pr- ( I don't know the levels though).

But I also need some qol to marital activity

Thank you ladies

xoxo

MCS (maria)
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Old 09-30-2007, 06:37 PM   #2
Becky
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I use estring and I am moderately ER+ (50%) but PR neg. It helps alot but is not perfect (I had my ovaries removed and I am on Arimidex as well).

All my docs say it is very, very safe. My main reason for using this was bladder infections. I was moderately dry (vaginally) but I could cope with that.

Replens and Rephresh (like Replens but helps balance vaginal pH) is also helpful.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-30-2007, 06:42 PM   #3
MCS
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Vagifem not vagimen. sorry.

What is most systemic in its absorption? estrace or vagifem?

maria
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Old 09-30-2007, 08:14 PM   #4
hutchibk
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I use estrace, my doc claims that at 1%, it is not strong enough to have a systemic effect.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-01-2007, 05:12 AM   #5
Hopeful
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I use Estrace cream. My gyn told me not to use the regular dose, which I think is 4 to a tube, but to use a "daub". I use an amount the size of a pea and apply it with a q-tip every three days. I am ER+ 80%, PR+50%. We checked my estrogen levels for the first month after starting treatment. They went from too low to measure (<50) to 112, then to 106, then back <50, then up to 70 (anything under 130 is considered "post menopausal.). My onc and surgeon are both fine with this; my surgeon told me that her office reccomends this treatment because the UTI's and yeast infections that occur with vaginal atrophy can become chronic and lead to worse problems. My gyn was estatic over the progress I made with this level of application in just two months. I also use Replens; the gyn told me that that will reduce the amount of Estrace cream I need to use to get results. It has greatly increased lubrication and sensation for me (because there is now good blood flow to the tissue) and I have less tenderness and discomfort. FWIW, I am now 53 years old, and stopped having periods at age 45. I was about to begin this therapy for vaginal atrophy when I was diagnosed with bc in April 2006, and it was put on hold for a year. Yesterday, I completed one year on Arimidex therapy, and will continue for 4 more.

Hope this helps.

Hopeful
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Old 10-01-2007, 09:37 AM   #6
hutchibk
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Exactly Hopeful! Estrace has cleared up ALL of my recurrent UTIs... haven't had one in a year. Up to that point I had had about 8 in 6 months...
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-01-2007, 01:10 PM   #7
Linda
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This is a very real problem! Chemo totally dries you out and makes sex painful, plus the other problems referred to. I use vagifem, and it makes a huge difference. My onc says I can use it as long as I want. I am hormone neg by the way.
Linda
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Old 10-01-2007, 05:09 PM   #8
MCS
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I went to the ob/gyn today.

He recommended Vagifem first instead of estrace. However, he did say that low doses of estrace was ok, especially if you are er-. Just like you ladies said.

He did add that other patients had tried replens and did not alleviate as much. but he certainly said not to try it. I will.

Also other patients had used estring, also with no problems.

I feel like I rather see if the replens works first and then do the vagifem.

I guess the vagifem ( a vaginal tablet) is taken for ten days straight and then 2-3 times a week forever.

In the past, pre bc, I had use progestorne creams and l-agynine. both of which of course stopped in July 2005. Friends had real good results with the progesterone crema- I did not notice antyhing different. The l-argynine did help with mood but I have stopped that because again, I'm scared.

Let me know if you come up with anything else.

If and when I switch, I'll post for others to research in future if they need it. As you know, this is our most thorough board for us.

MCS ( maria)
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Old 10-01-2007, 10:22 PM   #9
dlaxague
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My experience after chemo and two years of arimidex:

Replens/lubrication worked "okay" during chemo when dryness became an issue. Then it wasn't enough - probably at about a year out from diagnosis.

Estring, and lubrication, helped for a year or two, during Arimidex.

By about three years out, neither of the above helped at all.

Six years out (I'm patient, or my husband is - and/or stubborn), I said "enough" and my gyn prescribed Estrace cream, which has made an incredible difference. Now, with a little lubricant help, it's practically normal.

I'm ER/PR negative.

Ideas for the libido - how about substituting intention, and patience - lots of it, for libido-as-you-may-have-known-it? Initiate or respond in the beginning simply because you do want things to happen. Take it slow and enjoy the process with an open mind to how it might be different but still good. Like many things after or with cancer - there's probably a new normal and wishing for "like it was" will not serve you well.

It irks me when providers or articles talk about adding lubrication (including Replens) as if that's always enough to solve our problems. It may be enough for some women without breast cancer treatment histories who are experiencing garden-variety menopausal symptoms, but it is not nearly enough for us. How many women give up altogether because they are told that lubrication should fix their problem?

Good discussion.

Debbie L.
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Old 10-01-2007, 10:31 PM   #10
hutchibk
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I can't attest to it, but a "sexual wellness" counselor who spoke to my local young survivor's support group recommended a product called Ixora...
http://www.female-libido-enhancers.info/onlineoffer.htm

I believe it is supposed to be natural in substance, but as I mentioned, I don't have any experience with it. The link makes it seem more like 'Viagra' for women, but she claims that it is better for moisurizing, etc than Replens types of products, which have petroleum products in them.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 02-07-2008, 03:01 PM   #11
kat in the delta
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Posts: 224
Question kat in the delta

Will anything enhance or put you in the MOOD... like Viagra for men ?? Has anyone used or heard of others using Testosterone cream to help ??? ....or is premarine..better ??? kat needs.. help..
kat in the delta...
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Old 02-07-2008, 03:57 PM   #12
AlaskaAngel
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Unhappy Past threads on this topic

In answer to Dlaxague, by informal poll here, which shows that a LOT of bc patients are suffering by this, have not found ways around it, and have discontinued sex because of it:

http://her2support.org/vbulletin/sho...t=testosterone

A clinical trial regarding the use of testosterone for bc survivors was conducted:

http://her2support.org/vbulletin/sho...t=testosterone

A drug that seems to be forever in testing:

http://www.aphroditewomenshealth.com...lth_news.shtml

The study of this drug appears to be still recruiting:

http://clinicaltrials.gov/ct2/show/N...U%3AFI&rank=37

Several possible helpful posts here, including referral to info in a discussion at another website for bc:

http://her2support.org/vbulletin/showthread.php?t=24583&highlight=testosterone

-AlaskaAngel<O</O<O</O
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Old 03-10-2008, 10:31 AM   #13
TSund
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Location: DFW area (TX)
Posts: 431
Has anyone investigated estriol as opposed to the estradiol products?
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 03-10-2008, 10:47 AM   #14
hutchibk
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Kat - I was initially told to run far and fast from testosterone cream early on... but then I heard about this study in Dec at SABCS... regarding atrophic vaginitis (which is basically the name of what most suffer from, I think)

http://www.medpagetoday.com/MeetingC...eeting/tb/7729
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-10-2008, 12:43 PM   #15
AlaskaAngel
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testosterone

Thanks for the testosterone post, Hutchibk. I can't help but think it might also help with depression, given the article I posted in the articles forum about it helping men with depression who had very low testosterone levels.

The discussions on the presentation some years ago on Oprah (nothing to do with bc, just women who were menopausal using it because it helped them with libido) and other discussions around that time talked about using testosterone proprionate.

AlaskaAngel
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Old 03-10-2008, 05:04 PM   #16
dberg
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creams

I am ER+/PR+ and posted a similar question several months ago. I was on tamoxifen and the gyn onc I visited was gung ho for me to give premarin cream a try. I was very, very happy because it helped tremendously, but I didn't want to stay on it once I switched to Arimidex. This gyn onc about hit the roof when he heard I had switched to an AI. He doesn't recommend it for women on AIs because there is nothing to block the estrogen that might be systemic, which actually makes sense. But there seem to be other docs out there that don't believe much is absorbed systemically.

I am absolutely desperate. I'm going to seek a second opinion on this because I'm 49 and my QOL is severely compromised by this cycle of pain with sex and then the UTIs that follow.

My blessed and patient husband is uncomfortable with me using any form of estrogen, but for some reason I'm not. I'm so sick of all of this and want my normal, American, roll-over-and-make-love life back. Do I need to be talked down off this cliff and have some sense knocked in me or is any other ER+/PR+ woman as desperate as me?
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Old 03-10-2008, 05:49 PM   #17
Hopeful
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dberg,

I would be happy to have a "normal, American, roll-over-and-make-love life," to begin with! I am ER+ (80%) and PR+ (50%) and I am comfortable using topical estrogen cream (very, very, sparingly, mind you!) for this problem. Here is a link to an abstract that was presented at the SABCS in Dec. '07 that states that this therapy may be fine for some patients taking AI's:

http://www.abstracts2view.com/sabcs/...S07L_684<br />

You can always ask your doctor to give you prescriptions for blood draws to monitor you ER levels - that's what mine did.

Best of luck,

Hopeful
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Old 03-11-2008, 06:21 AM   #18
TSund
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Throwing this out ther again...Does anyone have experience with either estriol or the natural progesterone to address this problem?
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 03-11-2008, 08:39 AM   #19
SoCalGal
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Posts: 1,607
Me Too

Wow - I have been ultra remedial in connecting the dots. BIG changes this past few months. 2 UTI's and funny - the last one felt like it wasn't going away despite 2 rounds of antibiotics. I thought to use some replens on my own - felt irritated and it helped greatly.

DUH - now I realize that I have an ongoing "issue". I also need to find a new gyn as mine retired and moved (he has nerve!). I just didn't connect the dots but after reading all of these posts I get it. I even called my cousin (a leading urologist in NYC) to discuss the lingering feeling of a UTI and the side effects of chemo was not on his radar screen. But it's 100% true - I see it clearly now.

Thanks goils - you again helped me greatly. Now I will find the right cream/lotion/potion/lube
xo Flori
PS - Hutchi - I love your new picture of the heart cloud. Did you shoot that?
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 03-11-2008, 08:29 PM   #20
Catherine
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Join Date: Dec 2006
Location: Oregon
Posts: 715
Thanks for bringing up the painful sex problem again. I keep putting off making my gyn appointment. Replens seems to help a little, but I need more help. I miss the roll over and make love weekends that were part of our life. (loved that reference someone posted).

I think I will check on the estrace cream first, I am ER/PR negative.

Stay tuned, Catherine
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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