I WANT MY MOJO BACK!

barbe1958

I think a bunch of us were under the impression that positive ER meant that our cancer was stimulated by estrogen (or progesterone)! Wow, first time I've heard it the other way around! So all these women worrying about products and food with estrogen in them are worrying for nothing?

lakewoman

That is exactly what it means if ER positive that any remaining cancer cells will feed on estrogen in the body that is why those of us who take Arimidex are ER+ .Arimidex blocks the production of the body's own female hormones by stopping the production of oestrogen from the adrenal glands in post menopausal women.

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1246

I emailed Deb Jarvis, author of article on libido in CURE magazine,,This  site is how you can access it ., Deb Jarvis is a minister . But if her openness to her libido ,...or lack thereof at one time,, is offensive to anyone please just stop reading it.

barbe1958

Still confused...so if someone is ER-, then estrogen is not an issue, right?

Anonymous

Out of concern for the newly-diagnosed or anyone else coming here for info, let's set the record straight regarding estrogen's effect on hormone-negative breast cancers. It is widely accepted that taking estrogen will not encourage further growth of a cancer that did not grow in response to the presence of estrogen in the first place. This can be confusing to some, especially when they're told that they won't be getting hormone therapy because they have had ER-negative bc. And while it is true that ER-negative and triple-negative (negative for response to estrogen, progesterone and the presence of the Her2/neu protein) do tend to be more aggressive, this characteristic is independent of the presence of estrogen, etc. in the body. So it is therefore assumed that taking estrogen, in whatever form, is less risky for those who have had hormone-negative cancers. Marissa puts it this way: http://www.breastcancer.org/symptoms/diagnosis/horm_receptors.jsp

~Marin

barbe1958

Thanks Marin! Says what I've believed for a year.

iodine

As usual, well done, Marin!

lakewoman

 Good job Marin ..This describes ,why me an old fart , and yes , anyone postmenopausal..STILL HAS ESTROGEN!!!

 Aromatase inhibitors stop the production of estrogen ( also called oestrogen) in post-menopausal women. Aromatase inhibitors work by blocking the enzyme aromatase(produced by the adrenal glands, which turns another enzyme, androgen, into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

Aromatase inhibitors can't stop the ovaries from making estrogen, so aromatase inhibitors only work in post-menopausal women.

There are three aromatase inhibitors:

• Arimidex (chemical name: anastrozole)
• Aromasin (chemical name: exemestane)
• Femara (chemical name: letrozole

rgiuff

Unfortunately, Lakewoman, the aromatase inhibitors seem to cause major Mojo problems in many women because they are taking away that estrogen that our bodies so badly need.  I wonder if anybody on them is not having Mojo problems?

sam52

I've been taking aromasin for nearly 5 years and no mojo problems at all !! Quite the reverse actually........

Guess I'm just lucky, though I do wonder whether my body is sneakily making estrogen somehow or another.I always knew when I was ovulating when pre-menopausal and I believe I had high estrogen levels which might have been implicated in getting bc.Just my theory.

Not forgetting that a skilful lover is also responsible for great mojo, of course.

lakewoman

Rose ty for response .Yes you are right about the estrogen and libido. I was on .1mg patch, yes at my age because I chose to stay on it. That estrogen taken away via the patch removal ha! and the leftover estrogen gone ..ty to arimidex , has been my nemesis with libido > BUT I am having fun with my experimenting!!!  As an RN ,also, and a member of Harvard Medical Nurses Health Study for 30 + years~ just think what they are learning from me. But I have to admit if I had a choice  to do it over again I would do the same thing. TY for your response ,Sam ,good to know that some people are not affected adversely. YOU GO GIRL! 

rgiuff

Lakewoman, I just love the fact that you are experimenting in this area.  I've been doing the same for many months, trying to find a good solution without spending a fortune.  I've tried supplements, gels, creams, etc.  Maybe we can compare notes!  Luckily, I am not on AIs, have been on tamoxifen for about a year now.  Because of the vaginal discharge that it provides me, dryness is not an issue.  It's more a loss of sensation and some difficulty with the response, these areas are not happening the way they used to and I won't stop until I find a solution.  I've told my Onc that I really have no desire to switch over to AIs like he wants me to do once I'm a full year without a period.  I don't believe that stopping all estrogen production is a good solution for me, just not willing to go that route!

lakewoman

Rose I ,sure would love to compare notes. Let's not loose track of each other with holidays coming up!  First did you read the article by Deb Jarvis in the CURE magazine, I posted the website in this thread? I do not have vaginal dryness problems even on arimidex. I had another test today and think I am onto something !! I was so afraid of sex sites to purchase anything at all because of possibly receiving  porn stuff,,DID not happen! In fact, knowing me,ha! I will probably call this company and offer my kudos for this not happening!. I will write soon and give test results!!! For some reason the hotflashes have subsided considerably ,, ,,,,,I will only know if this relief will continue when we come into the next full moon cycle ,,that is when they are the worst...Well women's bodies have  high percentage of water and moon affects tides and a full moon can affect us just like the tides! ,,We both know , through training on OB, what the  full moon did to our delivery rooms!

Anonymous

As I mentioned in previous posts, I too have been on an aromatase inhibitor, Aromasin, for 4 years and my sex life has never been more amazing. Vaginal lubrication is great and orgasms are out of this world. There is hope and even if you have a different experience on these drugs or as a result of menopause, this thread is chock full of ideas and remedies, so get crackin' y'all!!

~Marin

Finewine44

Thank you for the link to the article by Debra Jarvis. I laughed so hard. It felt wonderful to read about someone who has the same problem that I have. Then I went on the website for Toys in Babeland to order some goodies.

lakewoman

Fineline 44~~~Glad you enjoyed article by Debra Jarvis I am now reading her book ,,Its not about the hair !Just started it and it is so good..Got it on Amazon not that expensive..think the article was an excerpt from this book..WOuld love to hear which goodies you selected I am still testing  the ONE I bought,,Results New Years Day ,,just decided on that deadline hahahhah!

lakewoman

HAPPY NEW YEAR TO YOU ALL...TEST RESULTS IN !!!!! ,REGARDING LIBIDO!!!! I TOLD YOU I READ ARTICLE IN CURE BY DEBRA JARVIS..FROM THAT TO A WEBSITE AND A BRAVE MOVE ~FOR ME~ TO BUY A PRODUCT...IT IS CALLED ORGASMIX AND IT HAS WORKED EVERYTIME I USED IT!!!! I AM SO GRATEFUL!  AM I YELLING??? NO MY CAPS WERE ON BY ACCIDENT, SORRY. BUT IS SURE IS SOMETHING TO SHOUT ABOUT!!! 

lakewoman

Oops forgot to mention it is just a lubricant and unlke some lubricants very little needed . Good thing quite expensive!

Anonymous

Happy New Year to everyone.  Well, my OBGYN, gave me a script for "Vagifem"  A twice weekly estrogen suppository.  She assured me it would be perfectly safe and would take care of the atrophy in the vag, but will not affect me systemically. She does not want me to use any progesterone cream though.  She also instructed me to use replense to lubricate in between vagifem doses and the 2 will help plump up the vaginal walls again.  Well it soooo does work.  I've been doing this for the last week or so and WOO HOO,  I had a great time with DH last night.  Got my O's back too!!! 

rgiuff

Good for you Lakewoman and Shanagirl.  Lakewoman, does that Orgasmix have any menthol in it?  I tried to look it up, but couldn't find any info that listed the ingredients.  I've tried a few lubricants and clitoral gels that are supposed to provide a tingling sensation, but have found that when menthol is the main ingredient, it burns more than provides pleasure for me.

lakewoman

Shanagirl so happy for you ..like me it has taken awhile to come to this point and no that was not an intended pun!!!!

Rose G you have to know how much I like you I just spent hours hahah with a magnifying glass reading Orgasmix tube..Typed it in here and then when I previewed it.. it was...voila gone ...here I go again in order of appearance...!!

PROPYLENE GLYCOL

HYDROYECHICELLOSE NF

L ARGINNE

MENTHOL

YOHIMBE GINSENG

METHYLPARABENPURIFIED WATER

(CPLa9)

now i easily could have missed a letter or three but I did my best...since menthol lower on list maybe then it be okay for you  plus the fact so little is needed...

kelly2010

Hi everyone...

I'm hoping to conduct some interviews about how the experience of cancer affects people personal lives/ relationships and the extent to which doctors / nurses picked up on this and were willing to discuss it.

I know this is a very sensitive topic, and it has deeply touched my life which is why I want to go into researching it and hopefully improving the situation for patients for my career.

If you would be interested in having a chat about your experiences either on the phone or face to face then please send me a message, that would be really great and very appreciated. If not, then thankyou for reading anyway.

All the best

Kelly

lillian194020

Dear Mena,

 I'm really heartbroken at the loss of my sex life.  It began 7 years ago when I was "chemically altered" by chemo and now with Femara, it down right hurts to make love with my partner.  You're so right, if bc was a man's disease, they would have, at the very least, found a treatment that didn't neuter us.  I haven't felt sexy in years and I used to love all the romance that surrounded sex as well as the act itself.  Between the dry skin, scarring, almost constant UTI's and hot flashes, I feel like the most unattractive woman in the world and naturally I communicate this to my partner. He's reassuring, but it still doesn't increase libido.   In short, I feel (and look) like I'm 90 years old.  Can I possibly convey how much I hate this &^%$! cancer!?

Enjoyful

There's hope in the pipeline for our dearly departed MOJO -

http://www.quatrx.com/clinical/ospem.htm

I'll post this in the research thread as well.

Jaybird627

Cool! I know I have some vaginal atrophy (my gyne confirmed it) but still have decent lubrication. Not as much as before but enough to get things going (lube generally needed now though). We SO need things like this! Thanks for the post/info.

Enjoyful

I really cannot wait for this drug to be approved by the FDA. My onc and ob/gyn had better be on board with it.  Grrrrrrrrrrrrrrr

Bren-2007

Enjoyful .. thanks for the link!  Yeah!

Enjoyful

As a follow-up to my earlier post: 

I saw my oncologist today and discussed the use of Ophena (a SERM) along with Femara.  He said that he could not recommend it in the absence of any studies, HOWEVER he did say he would give it to me if I really really wanted it.  And if I experienced any bad side effects I could just stop. 

Looking forward to some MO MOJO!

E

Edited to correct spelling.

Firni

Thanks for the hope enjoyful.  I use Estrace now and it works, but I'm still concerned about the estrogen in it.

Enjoyful

I'm afraid of estrogen.  I worry about it leaking out of my daughter's pores onto my skin.  LOL.

Firni

LOL  You are afraid, aren't you??