Libido and testosterone

A number of people have asked me about my perceptions of the recent clinical trial I partcipated in.

The testosterone clinical trial is not entirely over although it is closed to new participants, having filled its number of candidates long before expected. The coordinators were very helpful in doing whatever they could to help me participate by distance after the initial on-site physical exam and labs. The trial was 2 months in length, with each participant getting 1 jar of cream each month and not knowing which was the placebo and which had the testosterone in it, and then the next month reversing the creams. The cream was 2% testosterone and we were to use 1/8 teaspoon daily on the skin of the stomach or the thighs (fatty areas absorb in the best way). The only unpleasant aspect was that one had to put it on and then wait 5 minutes while it absorbed, which was a bit tiresome since all I wanted to do most of the time was hit the sack to sleep...

The first 2 days were a bit problematic in that the small spoon that I received was the wrong size but I wasn't sure until the third day. For whatever reason, I had 3 straight nights with a bad headache and wondered if that meant I was then getting the testosterone cream. It also seemed to me that the perineal area felt uncomfortably sensitive although I didn't feel any more libido. My husband and I started the clinical trial at the same time as a 2-week vacation so our mood was happy and we were at play.

Once a week a 1-page form with questions about various aspects had to be filled out. No, I didn't grow any more hair anywhere, or develop acne, or a deeper voice during the entire 8 weeks. At the end of each month a more detailed questionnaire had to be filled out. I also had to have lab tests periodically and send them in, so they would be able to terminate my participation if any lab came up out of range.

At the beginning of the first week of the second month I was surprised to suddenly find myself very depressed for the first 2 days. I wondered if that meant I had been on testosterone during the first month, and was coming off of it as I went into the second month and the second jar of cream. The depression ended without any problems and in fact I felt somewhat better in terms of mood for the rest of the second month than I had during the first one. At the end of the 8 weeks I filled out the last detailed form and sent it in, with my written guess that because of the sharp headache at the beginning when I accidentally started out with the wrong size spoon and dose, and because of the sudden depression at the start of the second month, I thought maybe I had been on testosterone the first month of the trial.

Not so. It turns out that the month that I was feeling the best was the month I was on the testosterone. At the end of the trial we were told that if we desired to continue to use the cream we would need to get a local provider to prescribe it, and that if we agreed then we would be contacted at the end of 6 months to provide any additional information. I don't know how many women decided to continue, but I did. It took some time to get the appointment with a local provider to get the prescription, but with the paperwork provided by the clinical trial, the cream was provided by our local small-town pharmacy without any problem. As a participant during the remaining months I am required to have blood draws every 3 months to be sure my hormonal levels remain postmenopausal. I am only a short way into the extended period now and actually I think it helps most in terms of general mood and greater energy, which then contributes to a more loving environment in general. I have no information about the results of the clinical trial pertaining to ALL of the women who participated, so this commentary on it is just my personal perspective. If you are interested, I will let you know at the end what I find out and what my experience with the entire process is.

[Lolly]

Alaska, thanks for the detailed report on this important study. I've considered whether to use a testosterone cream; my PC will write me a prescription and there's a local pharmacy which will mix it. I've been hesitant, not knowing what the side effects mignt be, but your experience in the trial has given me food for thought. Keep us posted!

<3,
Lolly

Hi Lolly. There are still a number of questions to be answered about this, so I will post some additional thoughts I have here for you and for anyone else who might be interested.

The short answer to the question "Did testosterone help with libido?" the answer is yes.

The long answer:

There may be conflicting interests in wider spheres than the realm of bc survivors when it comes to a clinical trial and any results.

1. Before participating in the clinical trial, I found that a number of women in online discussions who had experience using testosterone mentioned that it took quite a while before they experienced good effect. The 4 weeks of the clinical trial may not be long enough to demonstrate the effect accurately either way.

2. In the late 1990's there was program on Oprah on national TV where a general group of postmenopausal women who had used the testosterone cream were explaining how helpful they had found it to be. A major difference between their use and the use in the clinical trial was that those women were using it directly on the perineal area/clitoris, whereas the clinical trial required it to be applied to the stomach and upper thighs.

3. Another difference between the effects experienced by each of the 2 groups would be that a high percentage of the group of bc survivors would likely have had a more complete transition to menopausal hormonal levels due to having had chemotherapy.

4. Another difference between the effects experienced by each of the 2 groups would be that a percentage of the group of bc survivors would likely have at some time been on (and probably still are on) medication affecting hormonal levels throughout the clinical trial, such as letrozole, anastrozole, etc. in addition to having had chemotherapy.

5. Another difference in effect for some of the women in the trial may be due to which method they were using as a lubricant, and whether it included any estrogen.

So….

Prior to starting the trial I had spent 1 3/4 years on tamoxifen and then had not been on any hormonal suppressant medication for a long period of time. At the end of the clinical trial it was the general mood and energy that are a legitimate component of libido that had improved for me.

In addition, for some time prior to the clinical trial and during the clinical trial, I was using the E-string, which dispenses a minute amount of estrogen directly to the vaginal area. Prior to the clinical trial I found that it helped somewhat but that intercourse was still quite uncomfortable and very mechanical.

What I didn’t know at the time that the 8 weeks of the clinical trial ended but since have discovered is that intercourse is now a lot less painful--even after having a break from the testosterone while I was in the process of getting it prescribed in my home town. I am still using the E-string. I do not know if the testosterone "triggered" this, or what.

What hasn't changed in terms of libido, or at least not yet, is that there still is no sexual response to breast stimulation in either breast. (I am a left lumpectomee, hanging off the edge of Stage 1.)

I do feel that the increased interest I have in having intercourse is very worthwhile. No, it isn't exactly like being in the back seat of a Chevy as a teenager, but is quite different for me from how I felt prior to participating in the clinical trial, and perhaps it will get even better.

Yes, it is risky. Here is an excerpt from the website of Dr. Susan Love:

"Sexuality
What are the pros and cons of using daily oral DHEA? I have heard that it is better than testosterone for increasing sex drive?
DHEA stands for dehydroepiandrosterone. It is made by the adrenal glands and is a precursor for testosterone. Your body first begins making DHEA when you are around six or seven. The amount you have in your body peaks when you are in your 20's, and then slowly declines as you age. At all ages, men tend to have higher levels of DHEA than women do.
About four years ago DHEA began to be advertised widely as a "miracle" hormone that could do everything from prevent cancer to improve sex drive. However, we actually know very little about DHEA. And we know virtually nothing about how it might affect a woman's risk for developing breast cancer or experiencing a breast cancer recurrence.
There is some research that has found that testosterone may increase a woman's risk for breast cancer even more than estrogen does. This makes me concerned that DHEA could increase breast cancer risk as well. Until we know more, I would not recommend the use of DHEA."

My personal final comments:

The only way to find out what works best and what doesn't is to do the clinical trial, and just like with trying out various chemotherapies, there are hazards involved if we are going to find answers. I want to know if using more natural therapies is a healthy option for women with bc or not.

The info that is coming out from current research seems to point strongly toward a need to treat women in early stage bc with less toxic and more natural therapies. I think that in the best interests of society and the women involved, for example I would like to see more information available about a gold standard, head-to-head comparison between women who chose not to use chemotherapy and only use either tamoxifen followed by aromatase inhibitors or only use aromatase inhibitors and the women who chose to do chemotherapy followed by those therapies. I suspect that now that the aromatase inhibitors are available, the truth for early stage women is that neither they nor society is benefitting from the application of chemotherapy. Too many women simply assume that they need to hit cancer with the most toxic therapy possible and this may not be true at all for certain groups of bc survivors. Because the emphasis has been so heavy on chemotherapy for so long, it needs to be challenged. As I was told when I was about to start chemotherapy, chemotherapy does not cure cancer, it only delays and/or reduces recurrences.

Because we are going on what seems like forever trying very toxic therapies and yet we seem not to have done a thorough investigation of the natural hormones, somebody has to start shining more light in that direction.

A.A.

AA, thank you for all that information. Very interesting.

When do the final results of the trial come out?

Hi Cara. I don't have a definite answer to when the results will be available, but I am to receive them. Since participants were given the option of continuing to use testosterone for 6 more months and will be contacted at the end of 6 months after completing the initial 8-week trial, likely the results should be available shortly after that. I know the trial itself was closed to new participants in February -- but some participants may have delayed actually starting a bit, as of course we all didn't start at exactly the same time. Also, there is some studying of information going on for 2 years from the date of start of participation.

What I don't know is whether the trial was designed for short exposure as a cautious approach for bc survivors, or whether it was designed to be short so that results would indicate that use of testosterone was ineffective. I just am not sure how accurately the trial will reflect whether using testosterone is helpful or not for bc survivors.

>>I do feel that the increased interest I have in having intercourse is very >>worthwhile. No, it isn't exactly like being in the back seat of a Chevy as a >>teenager

Prior to BC diagnosis, ( 11/04, I am stage 1, ER/PR- HER2+++ lumpectomy and radiation only-) -I was on testosterone. Background: I had had a hysterectomy with removal of ovaries two years previously for endometrial cancer and was on estrogen replacement. I went off all hormones when diagnosed.
My endocrinologist put me on testosterone gel last summer that is applied to the arm. We kept lowering the dose as blood work showed I was overdosing. I felt like a 17 year old MALE high school student and the back seat of a Chevy would have been fine! However, lots of mustache hairs, just like a boy would be growing. As I cut back on the dose, so did my interest in sex. I think it took a fairly high dose to give my desired effect. Now my libido is about nil but I would not go on testosterone again until I find out more about its effects on BC. I see my gynecological oncologist Monday and will see about using topical estrogen. Angel, did you say a string? Any advice on it? Like hormone dosage? Name?
Janet/FL

Janet, there are several options for vaginal use. Some are tablets. I find the Estring (mine is listed as produced by Pharmacia and Upjohn) more convenient, as it is inserted once every 3 months and I don't even know it is there once I've put it in. Per package info it contains 2 mg estradiol and 7.5 micrograms per 24 hours is released over 90 days.

In 3 months I will be making a switch from the E-string to using estriol. I am not unhappy at all with the E-string, but prefer to research the use of estriol on myself as one alternative to see how it works. Its use is more widely done in Europe but since it is not patentable it makes less money for the pharmaceutical companies.

The clinical trial for testosterone used a very low dose as the whole thing was naturally controversial in terms of bc survivors. As it is, if my labs start rising, the dosage I am using reverts to every other day.

As you say and as I honestly posted, the use of testosterone is still very much in question for bc survivors. But it will continue to be just that unless some of us participate in the research.

As you say, the testosterone did increase your libido at a larger dose. I do feel the testosterone has helped somewhat, and I am hoping there is a dosage that may be established that may eventually help the huge number of women who are affected adversely by treatment for bc.

AlaskaAngel

[StephN]

Interesting subject for most of us. As you stated, A.A., the use of chemotherapy puts us firmly into menopause. I was there already, but libido was still fine, fortunately. Aftermore chemo and drugs, the desire is less.
I have noticed a number of offerings in the way of testosterone/progesterone/ and other hormonal creams in the health food stores and at my local Seattle Super Supplements. Also many on line. With such a bewildering array of compounds, and having already been metastatic, I have shied away from them and not even asked my med onc about them. I have a great physician's assistant and maybe will approach her on this subject.
This is probably an important thing to consider, but I am just so busy with all kinds of things, that it get pushed into the far corners of my mind!

[Lolly]

I agree that the research is so important, as this is a subject near and dear to us!!! Like Steph, I was already menopausal when diagnosed, but libido definitely took a hit from chemo...When my PCP suggested the testosterone cream, I was initially kind of excited, then did some internet research; less excited, then as usual talked it over with my oncologist who said it might also help bone strength...but in the end I decided to hold off for now...I'm a big chicken :) Thanks again A.A. for doing this.

<3,
Lolly

[janet/FL]

Hi Angel
I just ran across this tread and wonder if you have any update on the used of testastrone?
I sure could use a hit of it!

[AlaskaAngel]

Hi Janet/Fl,

Trials sometimes take a while to report. I participated in the trial in 2004 and the results came out in late 2006.

Here's my earlier thread on the results:

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

I'm not currently using testosterone, and have very low libido. I don't know if the 1-month duration or the dose was so minimal that the risk was minimized by that, but at any rate, I'm still NED (T1c at dx) and coming up on 5 years out from completion of CAF x6, rads, and 1 3/4 yrs of tamoxifen this November. I was hoping the trial would be more definitive than it turned out to be in terms of helping or not with libido. I don't advocate use of testosterone in particular, but still am not sure what else to do about it.

At least 2 different SERMS (similar to tamoxifen) have been investigated for improvement of libido in the general female population as a possibility, and I think at least one of them made it to the III level but I'm not sure where it is at present.

AlaskaAngel

[MCS]

Very timely. I posted a question regarding this a week ago including vaginal estrogen creams, etc

The ob/gyn said I could try the replens, rephresh, ky tablets etc and if did not work he gave me a prescription for vagifem, which the onc approved of.

however, the question still in my mind about libido. I have said it before, George Clooney could not light my fire I was menopausal before bc and chemo, so the libido went away even further. I think the stress of bc does a number in your head too.

the ob/gyn was hesistant to give me anything with testoterone at this time. maybe because he wants to see how my hormones react to the vagifem.

I have looked into heatlh stores and considered some form of progesterone but like Lolly I'm big chicken too. I do know of not to use DHEA- a friend of friend tried it and had all sort of moods ups and downs .

I have heard of l-arginine is useful for this libido. anyone tried this?

mcs maria

[MatyJann]

Hello, I'm visual impaired. I would know if the forum have an accessible version. Thanks.--------------------------------------------------------Windows XP Home, Pentium III, 2.3Ghz, 2Gb Ram, Accessibility Suite V2.0

[tricia keegan]

MatyJann, I'm not sure about this but if you send the webmaster (Joe) an e mail he can advise you

[Chelee]

I have been PMing Joe about quite a few spammers over the last few months. I can't help but think since this person leaves a "link" advertising a computer program of so sort, that this is just a way to get around looking like a spammer. It's to get you to click on the link which is trying to sell you something. Which I would never do because it's also a good way to get your computer infected.

There have been several other different user names under other forums doing this same type of thing--all leading you to websites for prescribtion medications, ebay ads, and now this. If I'm wrong I apologize to this person. This person can email Joe as Tricia said. Joe will know if it's legit or not?

Chelee