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03-31-2005, 01:09 PM

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.

03-31-2005, 01:09 PM	#3
_AlaskaAngel_ Guest Posts: n/a	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.