CancerCompass message board discussion started by didi719 on 2/13/2008 http://www.cancercompass.com/message-board/message/all,20911,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had a bi-lateral mastectomy 7/07.  Since I did not have lymph node involvement I did not have to have radiation or chemo. I have been taking Arimidex since my cancers were ER+. I have absolutely NO libido whatsoever. Has anyone else experienced this and is there any treatment? didi719 Wed, 13 Feb 2008 00:00:00 GMT Hi there, I had bilateral mastectomies a couple of years ago.  I also did chemo but not radiation and was ER- so didn't take any other meds.  I found that my libido disappeared, too. It is really hard to move on with life "normally" (whatever normal is, wink) when still experiencing side effects of cancer treatments.  Talk to your OB-gyn to find out if there are options that could help you.  That's what I did.  I'm still trying to see what helps best, but there are some possible things you could do.  All the best to you and hang in there!  pinkribbonmar Thu, 14 Feb 2008 00:00:00 GMT Absolutely!!!! I also had a bilateral, and had my ovaries removed and am now on Arimidex. I have no libido at all, and on the few occasions that we did "try", I was so sore that it really wasn't possible. I know a couple of my doctors have mentioned vagifem or another "low" estrogen solution, but I do not want to go that route. After all, I had my ovaries removed and am now on the arimidex to get rid of estrogen so that this darn cancer doesn't return. Why would I want to tempt fate???? Let me know if you figure out a solution! cayenneblue Thu, 14 Feb 2008 00:00:00 GMT  On 2/14/2008 cayenneblue wrote:Absolutely!!!! I also had a bilateral, and had my ovaries removed and am now on Arimidex. I have no libido at all, and on the few occasions that we did "try", I was so sore that it really wasn't possible. I know a couple of my doctors have mentioned vagifem or another "low" estrogen solution, but I do not want to go that route. After all, I had my ovaries removed and am now on the arimidex to get rid of estrogen so that this darn cancer doesn't return. Why would I want to tempt fate???? Let me know if you figure out a solution!  I had a bi lateral 2 1/2 years ago with radiation -  at my age I did not notice any libido problem -as my husband passed away -  but major depression and loss of sleep among other side effects terrible bone pain in hips and legs -- I could not even sleep in my pillow top bed without pain -- I went off Arimidex but as my cancer was estorgen positive I started taking an estrogen blocker (over the counter) capsule called Brevia which can be purchased at certain food stores or over the internet ) I get mine at Mothers Whole Foods - if you have one there and so far it seems like I am doing fine -  my blood work comes out good and THERE ARE NO SIDE EFFECTS.   If any med has ten aside effects I will get at least eight of them -- I am allergic to so many meds -- I hav enot heard abou the libido problem but most complaints are terrific bone pain and it does affect your bone loss which is why I had to have a bone density test and would have had to continue having them if I had stayed on Arimidex.  Toni R Tonir24 Thu, 14 Feb 2008 00:00:00 GMT  On 2/13/2008 didi719 wrote:I had a bi-lateral mastectomy 7/07.  Since I did not have lymph node involvement I did not have to have radiation or chemo. I have been taking Arimidex since my cancers were ER+. I have absolutely NO libido whatsoever. Has anyone else experienced this and is there any treatment?  Kbcns7 Thu, 14 Feb 2008 00:00:00 GMT My message to you was cut off.  Your doctors won't tell you that you will become a man with Arimidex or any other estrogen-suppression cancer therapy because THEY aren't enduring trans-sexualizing cancer therapy.  Do you know that European female body builders use Arimidex to develop bigger muscles and to become less feminine?  No you don't.  When one gets Arimedex, one agrees to have their femaleness destroyed.  That's all I can say, as a former user of  it.   After three and a half years on Arimedex, I myself decided to stop the therapy, without my oncologists's input or consent.  And when I told him that I thought it was too damaging to me as a woman, he suggested yet another estrogen suppressing drug.  At that point, I said to myself, my life is my hands and I have to stop the pharmaceutical abuse. What would he know, anyway.  They go by what the pharmeceutical companies tell them, make no mistake. Estrogen suppression therapy is only appropriate for men with prostate disease.  Good luck to ladies who can't say, wait a minute, I want to get some  more information, I want a week or two to do research, I want two more opinions,  I only wish I knew in 1996 what I know  now..  .  Kbcns7 Thu, 14 Feb 2008 00:00:00 GMT Hard to believe female body builders use Arimidex when it is linked to bone loss........  I agree that it has a lot of crappy side effects.  I too lost libido (after being thrown into menopause and having chemo & radiation).  I went to a gynocologist who specializes in menopause and female cancer patients.  She put me on vagifem first for the awful dryness and now I use the Estring.  Yes, it secretes a tiny amount of estrogen (and I had E++ cancer) but she says it's confined to the vaginal area and I also decided that quality of life was important to me.  My life has already been altered by the cancer treatment and resulting lymphedema.  I wasn't about to give up my sex life too.  Does the Estring put me back to where I was prior to cancer?  No, but it has helped both with sex (now possible)and with the bladder problems so I'm satisfied. Sewwonderfulwoman Fri, 15 Feb 2008 00:00:00 GMT  On 2/13/2008 didi719 wrote:I had a bi-lateral mastectomy 7/07.  Since I did not have lymph node involvement I did not have to have radiation or chemo. I have been taking Arimidex since my cancers were ER+. I have absolutely NO libido whatsoever. Has anyone else experienced this and is there any treatment?I only had a left mastectomy, chemotherapy and radiation and have been on Arimidex for two years.  It took almost a year and a half before I decided that I was not only still a woman, (Oh, I forgot to mention, a hysterectomy in 1990 for cervical cancer), but that I was still capable of being attractive and sexual.Once I got feeling well enough and got my head back together, I made the conscious decision to look better, which in turn made me feel better!  I colored my hair, started using makeup again, dug out some clothes that I liked, being careful to make sure they would not show my prosthesis.  I still have problems wearing high heels because of the neuropathy from chemo treatments, but I'm doing better with lower heels.  Once I felt that I looked better and more attractive, it was easier to allow myself to relax and enjoy sex with my husband.  No, the libido is not the same as it was but it's a vast improvement over what it was two years ago.Yes, we do need Astroglide but that's a wonderful product and there are many others, easily available, that do not contain estrogen.  I don't know how much help this gives you but I don't think it's the Arimidex alone that causes so much problem with sexuality.  It's not a pleasant thing to be on but I look at the increased chance of survival and consider it worth the side effects.  Logicat Mon, 18 Feb 2008 00:00:00 GMT  On 2/14/2008 Kbcns7 wrote:My message to you was cut off.  Your doctors won't tell you that you will become a man with Arimidex or any other estrogen-suppression cancer therapy because THEY aren't enduring trans-sexualizing cancer therapy.  Do you know that European female body builders use Arimidex to develop bigger muscles and to become less feminine?  No you don't.  When one gets Arimedex, one agrees to have their femaleness destroyed.  That's all I can say, as a former user of  it.   After three and a half years on Arimedex, I myself decided to stop the therapy, without my oncologists's input or consent.  And when I told him that I thought it was too damaging to me as a woman, he suggested yet another estrogen suppressing drug.  At that point, I said to myself, my life is my hands and I have to stop the pharmaceutical abuse. What would he know, anyway.  They go by what the pharmeceutical companies tell them, make no mistake. Estrogen suppression therapy is only appropriate for men with prostate disease.  Good luck to ladies who can't say, wait a minute, I want to get some  more information, I want a week or two to do research, I want two more opinions,  I only wish I knew in 1996 what I know  now..  .  Kbcns,Anything that's used outside the parameters of what it was designed for can be dangerous.  That especially applies to things like Arimidex.  The illegal steroid market is a master at this.  BUT, just because it's used by some people in that capacity does not mean that it was designed for use as you described.  For that matter, all of the steroids used incorrectly, illegally and without PROPER medical oversight, fall into the same category.  Ordinary table salt is a good example of a product that's not only considered safe and required for health, can be deadly!  You will NOT become a man using Arimidex!  No one is agreeing to have their "femaleness destroyed"!  I DID get more research and information and that's how I found out what you're talking about.  The illegal steroid market is out to make money.  They don't care what they convince someone of and don't care what the effects of their actions are except when they kill their buyers, they must find new ones or drugs that don't kill them as quickly.Arimidex, on the illegal steroid market, is marketed for use by males to stop the normal amounts of estrogen from interfering with solid looking muscles or the buildup of breast tissue that often results from some of the other illegal drugs they take.Just because you are frightened of it because you heard or read such things, or decided that the side effects weren't to your liking, please don't cause others to panic when they're using Arimidex just as their oncologist directs.  There is a world of difference and someone else that could have a long survival on the drug and goes off it out of fear may not be as fortunate as you.  Logicat Mon, 18 Feb 2008 00:00:00 GMT  On 2/18/2008 Logicat wrote: On 2/13/2008 didi719 wrote:I had a bi-lateral mastectomy 7/07.  Since I did not have lymph node involvement I did not have to have radiation or chemo. I have been taking Arimidex since my cancers were ER+. I have absolutely NO libido whatsoever. Has anyone else experienced this and is there any treatment?I only had a left mastectomy, chemotherapy and radiation and have been on Arimidex for two years.  It took almost a year and a half before I decided that I was not only still a woman, (Oh, I forgot to mention, a hysterectomy in 1990 for cervical cancer), but that I was still capable of being attractive and sexual.Once I got feeling well enough and got my head back together, I made the conscious decision to look better, which in turn made me feel better!  I colored my hair, started using makeup again, dug out some clothes that I liked, being careful to make sure they would not show my prosthesis.  I still have problems wearing high heels because of the neuropathy from chemo treatments, but I'm doing better with lower heels.  Once I felt that I looked better and more attractive, it was easier to allow myself to relax and enjoy sex with my husband.  No, the libido is not the same as it was but it's a vast improvement over what it was two years ago.Yes, we do need Astroglide but that's a wonderful product and there are many others, easily available, that do not contain estrogen.  I don't know how much help this gives you but I don't think it's the Arimidex alone that causes so much problem with sexuality.  It's not a pleasant thing to be on but I look at the increased chance of survival and consider it worth the side effects.Thanks for the Info.  I agree the mental part is huge.  It isn't that I feel unatractive really.  For me my breasts were just the source of most sexual sensation and now with both breasts gone and then add to that the Arimidex with its side effects, I just feel totally unsexed.  didi719 Wed, 20 Feb 2008 00:00:00 GMT  Thanks for the Info.  I agree the mental part is huge.  It isn't that I feel unatractive really.  For me my breasts were just the source of most sexual sensation and now with both breasts gone and then add to that the Arimidex with its side effects, I just feel totally unsexed. didi,My heart goes out to you.  This whole darned cancer thing is a slam in the ego, the sexuality, the self-confidence, and just plain what life was supposed to be about.  But, there are others going through much worse.  I don't kow if that thought will help, but it does get me through some of my bigger hurdles when I'm feeling as though I'm picked on.A visit to a "sex shop" believe it or not, is probably in store for you.  An understanding person at our local "shop" helped me look forward to enjoying sex with my husband again.  It can be intimidating the first time but so well worth it.Let me know how you're doing.    Logicat Wed, 20 Feb 2008 00:00:00 GMT  On 2/14/2008 Kbcns7 wrote:My message to you was cut off.  Your doctors won't tell you that you will become a man with Arimidex or any other estrogen-suppression cancer therapy because THEY aren't enduring trans-sexualizing cancer therapy.  Do you know that European female body builders use Arimidex to develop bigger muscles and to become less feminine?  No you don't.  When one gets Arimedex, one agrees to have their femaleness destroyed.  That's all I can say, as a former user of  it.   After three and a half years on Arimedex, I myself decided to stop the therapy, without my oncologists's input or consent.  And when I told him that I thought it was too damaging to me as a woman, he suggested yet another estrogen suppressing drug.  At that point, I said to myself, my life is my hands and I have to stop the pharmaceutical abuse. What would he know, anyway.  They go by what the pharmeceutical companies tell them, make no mistake. Estrogen suppression therapy is only appropriate for men with prostate disease.  Good luck to ladies who can't say, wait a minute, I want to get some  more information, I want a week or two to do research, I want two more opinions,  I only wish I knew in 1996 what I know  now..  .  According to my son-in-law who used to be a body builder, athletes who take steriods to 'bulk-up" sometimes take Amimidex to block any female hormones the body naturally produces and to enhance the effects of the testosterone. didi719 Mon, 10 Nov 2008 00:00:00 GMT