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Old 01-19-2012, 09:17 PM   #1
Myra Lynn
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any help for vaginal dryness?

I have been having painful dryness that is interfering with everyday functioning. It started after a year of taking aromatase inhibitors. Does anyone have experience or recommendations for what can help this?
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Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-t
oo much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.

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Old 01-20-2012, 06:07 AM   #2
Becky
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Re: any help for vaginal dryness?

There is a non hormonal over the counter product called Replens. It is usually in the pharmacy section with other lubricants such as KY jelly. It works well. It comes in applicator tubes and one tube lasts 3 days. The first day is alittle messy and you have to use a pad or panty liner.

This company makes another product call RepHresh. This product does the same thing as Replens but it is buffered and stabilizes the vaginal pH which usually contributes to "our" problem.

If you find you cannot tolerate a product like this or your problem is more severe and these products don't help, you should talk to your oncologist as some women use topical estrogen cream (Premarin for example) or a ring called estring. These are prescription and they do topically administer a small dose of estrogen. Some believe this is counter intuitive and in the beginning of use, there could be some systemic uptake of estrogen. However, it is also believed that once the vagina is healthy again, the healthy vagina walls prevent this.

Most women try lubricants first before resorting to estrogens. I could not use Replens/Rephresh due to irritation issues (this is uncommon but could happen) and then move on. I used estring for about 6 months which healed me. Then I moved onto Premarin cream which I used at 1/4 of the recommended dose every 3 days (usual dose is 1/2 to a full applicator every day) and that maintained me. Then I stopped. Things are not perfect now with using nothing (for the last 2-3 years) but nowhere near as bad as the beginning. I think the body gets used to the low estrogen level in the body.

Anyway, I hope this information helps you.
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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
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Old 01-20-2012, 06:26 AM   #3
Myra Lynn
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Re: any help for vaginal dryness?

Many thanks, Becky, incredibly helpful. Gives me some hope.
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-t
oo much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.

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Old 01-20-2012, 07:28 AM   #4
Hopeful
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Re: any help for vaginal dryness?

My surgeon is willing to write scrips for me for both Estrace cream and Vagifem tablets, which are inserted into the vagina and then release low levels of estrogen. Many of us are embarassed or uncomfortable talking to our cancer docs about this problem, but I encourage you to speak up, as the doctors are unlikely to ever ask you about this symptom and won't know unless you tell them. As Becky said, there are over the counter products that can be tried as well as prescription drugs. My vaginal atrophy at one point was so severe, my gynecologist was not sure she could collect enough cervical cells for a pap smear. She has told me that waiting will only make it worse - it is a condition you need to get ahead of. The topical estrogens made a big difference for me. I hope you are able to find a solution that will bring you relief.

Hopeful
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Old 01-21-2012, 05:51 AM   #5
Jackie07
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Re: any help for vaginal dryness?

I was going to recommend eating soy beans - as my Mother had done to relieve her menopausal symptoms, but then I noticed that you are highly estrogen positive. I think you need to be sure to use a non-estrogen cream (such as Replanse)

Exercise helps. Hope you will feel better soon.
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Old 01-21-2012, 01:09 PM   #6
Hopeful
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Re: any help for vaginal dryness?

FWIW, I was highly hormonally positive (ER+ 80%, PR+ 50%), and none of my docs (onc, rads onc, surgeon, gyne) had a problem with me using these ER products - they are the ones who recommended them.

Hopeful
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Old 01-21-2012, 02:22 PM   #7
karen z
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Re: any help for vaginal dryness?

Becky,
Thanks for the info. Very helpful.
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Old 01-13-2014, 09:29 AM   #8
kathryno
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Re: any help for vaginal dryness?

Hi Ladies,

I'm a researcher at Stanford University looking to develop a new treatment for vaginal dryness. My team is conducting a survey to determine what type of treatment is desired, and I would appreciate 5-10 minutes of your time. The link to the survey is here: https://www.surveymonkey.com/s/L528XPQ

Thank you very much for your help!

Kathryn
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Old 01-13-2014, 12:17 PM   #9
AlaskaAngel
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Question Re: any help for vaginal dryness?

Kathryn,

Would you happen to know what the present story is on the use of ospemifene for breast cancer patients who are experiencing the problem? As I understand it, in order to get it approved so it would sell to other women, it was not tested on bc patients. Since it already is available to non-bc patients and seems to be working well, and it IS, after all, a SERM (which is what tamoxifen is), would it be possible for Stanford U to find ways to determine whether ospemifene actually is or is not a problem for bc patients rather than perhaps re-inventing the wheel?
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
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Old 01-13-2014, 06:43 PM   #10
Laurel
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Re: any help for vaginal dryness?

Kathryn,

You may wish to post your survey in a separate thread. Thank you at Stanford for thinking of us. I presently use Vagifem, but worry about increased estrogen levels raising my risk of recurrence.
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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
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Old 01-13-2014, 07:11 PM   #11
Deltadiva
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Re: any help for vaginal dryness?

I'd like to echo what some others noted. My onc told me several months ago that there are studies that show that premarin cream does NOT make a difference for bc patients taking Arimidex. My gyn did not know this! I had the same problem for years starting a decade ago and then the work had not been done because Arimidex was too new.
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First occurrence: found lump in my left breast in 2002. 1.4 cm Stage I Grade I Node neg ER+ PR+ HER2 neg (didn't even know what HER2 meant). Lumpectomy, radiation, 5 years Arimedex.
Second occurrence: Oct. 2013 I found a lump in my right breast 3 months after a clear mammo.
1.5 IDC Stage I, node neg, Grade III.
Lumpectomy in November.
First path report ER+ 10% PR- HER2 neg. two margins not clear. Sample sent for Oncotype Dx test. After much delay and confusion, it turned out there are two cell lines. The ER+ tissue has an RS score of 37. The second cell type is ER-PR- HER2 +++. This double tissue type has only been found by the Oncotype lab 3 times for the entire US since they started doing the test. I'd like to be unique some other way!
October 2013 double mastectomy without reconstruction.
Treatment plan: 6 infusions of TCH then the rest of the year Herceptin, and Arimidex forever. After all this, my chance of dying from cancer in the next 10 years is probably less than dying from something else!
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Old 01-13-2014, 10:11 PM   #12
Aussie Girl
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Re: any help for vaginal dryness?

Hi,

These articles may be of interest to you. There is some information related to breast cancer patients within these general articles.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474153/

med.monash.edu.au/.../managing-your-menopause-after-breast-cancer.pdf


Each of you should discuss this with your own doctor, but many oncologists and even gynecologists are not that well informed about breast cancer and low dose vaginal estrogen, which I think is the most effective treatment for vaginal atrophy.

I have seen one article on the net that showed that after a few weeks, vaginal estrogen does not increase serum estrogen level beyond normal levels found in post-menopausal women. http://www.ncbi.nlm.nih.gov/pubmed/8041532
This agrees with what my oncologist told me. Once the vaginal lining is thickened up by the estrogen, not enough escapes to the blood stream to cause a problem.

She had no problem with me using it, although my cancer was ER negative. It has helped me with vaginal atrophy using Ovestin (estriol 1mg/g) cream, 0.5g dose every second day, but I still have hot flashes all the time. The oncologist wasn't keen on it for ER pos patients.

This article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3396801/ suggests it may be a problem for ladies on aromatase inhibitors (Arimidex and Femara) but it was a small study and the dose for the vaginal estrogen tablets was 25 micrograms (discontinued product) where as lower dose 10 micrograms tablets are now used.

Note: Tablets and rings deliver a more accurate dose than a cream.

There is not a lot of evidence around for breast cancer patients, but my thoughts are this:

If you had an ER neg tumor, use vaginal estrogen, as necessary. Ignore the warnings on the medication box insert.
If you had ER pos early breast cancer, the general articles given above suggest vaginal estrogen is OK if you are not on an aromatase inhibitor.
If you are on an AI, try the other methods such as Replens, then discuss carefully with your oncologist - if your symptoms are bad or your quality of life and relationships are disrupted, it may be worth the unquantified "risk" of using a low dose.
If you have ER pos mets, likely no doctor will prescribe estrogen in any form anyway.

These are my thoughts, anyway. I'd like to hear of any tips from those into alternative medicines also.

Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 01-15-2014, 05:40 PM   #13
kathryno
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Re: any help for vaginal dryness?

Thank you all for your thoughtful responses and ideas, as well as for taking the survey!

AlaskaAngel - I'm not a MD, so I'm not super familiar with the current guidelines. However, I'll ask one of the gynecologists that I know, and I will post their answer here. Also, thanks for the thought on testing ospemifene. I will have to check if anyone has been testing it on breast cancer survivors.
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Old 02-04-2014, 11:31 PM   #14
waterdreamer
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Re: any help for vaginal dryness?

Take evening primrose oil. I use coconut oil as a lubricant. Since stopping Kadcyla, vaginal dryness is no longer a problem. I have an extremely active sex life
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Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 02-04-2014, 11:37 PM   #15
Aussie Girl
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Re: any help for vaginal dryness?

Thanks Waterdreamer,

Glad to hear someone with positive news on this front!

Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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