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Myra Lynn
01-19-2012, 09:17 PM
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?

Becky
01-20-2012, 06:07 AM
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.

Myra Lynn
01-20-2012, 06:26 AM
Many thanks, Becky, incredibly helpful. Gives me some hope.

Hopeful
01-20-2012, 07:28 AM
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

Jackie07
01-21-2012, 05:51 AM
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.

Hopeful
01-21-2012, 01:09 PM
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

karen z
01-21-2012, 02:22 PM
Becky,
Thanks for the info. Very helpful.

kathryno
01-13-2014, 09:29 AM
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

AlaskaAngel
01-13-2014, 12:17 PM
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?

Laurel
01-13-2014, 06:43 PM
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.

Deltadiva
01-13-2014, 07:11 PM
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.

Aussie Girl
01-13-2014, 10:11 PM
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 (http://her2support.org/vbulletin/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

kathryno
01-15-2014, 05:40 PM
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.

waterdreamer
02-04-2014, 11:31 PM
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 :)

Aussie Girl
02-04-2014, 11:37 PM
Thanks Waterdreamer,

Glad to hear someone with positive news on this front!

Aussie Girl