HER2 Support Group Forums - View Single Post - Oncs trivialize side effects: the 2 big ones

AlaskaAngel · 01-13-2007, 01:06 PM

Yes, I participated in the NCI trial for use of low dose testosterone by bc patients. I have asked for the results but haven't received them yet (trial was done in 2004). I cannot say definitively that it made a difference, but that may be because the trial was limited to one month's use only and the testosterone was specifically not to be used in the genital area. In all the other discussions among both cancer patients and noncancer patients that I've seen, including the TV presentation on Oprah about this, the testosterone was genitally applied and I think that probably does make a major difference in outcome. I do not know if that means there was a bias that affected the outcome.

IMHO, there is a distinction between libido and sensuality/sexuality. Libido is the broader sense of joy of living; sexuality is just one type of libido. Treatment affects libido.

There is a phase III clinical trial that is being done for a drug that may improve libido and by coincidence is also a SERM, which is interesting. Was it discussed at SABCS? It was mentioned at one point by one of the reputable cancer centers.

I do want to add more commentary that I received from the lady who sent me the comments yesterday:

"I finally got a small sample of marijauna from someone who knew I had breast cancer. My DH and I were excited to try it as we have not had relations since diagnois and that was over two years ago. I could just not get in the mood. Well, we did try once, but it was so painful I didn't want to do so again.
To complicate the problem, my husband has some sexual issues that even viagra doesn't solve totally. I need to be in the mood for it to work for him!
Well, smoking, a little bit of brandy and some cocoanut oil put us in the mood. Lots of fun. Some pain, but, I think mainly I lost my inhibitions and fear of pain and just was enjoying it as was he.
Definitely worth a try, if possible. Sex is one of God's gift to us. And with all we go through, we sure can use all the gifts we have. Can't believe it can't be given to us, even by prescription."

01-13-2007, 01:06 PM	#11
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Sensuality and sexuality Yes, I participated in the NCI trial for use of low dose testosterone by bc patients. I have asked for the results but haven't received them yet (trial was done in 2004). I cannot say definitively that it made a difference, but that may be because the trial was limited to one month's use only and the testosterone was specifically not to be used in the genital area. In all the other discussions among both cancer patients and noncancer patients that I've seen, including the TV presentation on Oprah about this, the testosterone was genitally applied and I think that probably does make a major difference in outcome. I do not know if that means there was a bias that affected the outcome. IMHO, there is a distinction between libido and sensuality/sexuality. Libido is the broader sense of joy of living; sexuality is just one type of libido. Treatment affects libido. There is a phase III clinical trial that is being done for a drug that may improve libido and by coincidence is also a SERM, which is interesting. Was it discussed at SABCS? It was mentioned at one point by one of the reputable cancer centers. I do want to add more commentary that I received from the lady who sent me the comments yesterday: "I finally got a small sample of marijauna from someone who knew I had breast cancer. My DH and I were excited to try it as we have not had relations since diagnois and that was over two years ago. I could just not get in the mood. Well, we did try once, but it was so painful I didn't want to do so again. To complicate the problem, my husband has some sexual issues that even viagra doesn't solve totally. I need to be in the mood for it to work for him! Well, smoking, a little bit of brandy and some cocoanut oil put us in the mood. Lots of fun. Some pain, but, I think mainly I lost my inhibitions and fear of pain and just was enjoying it as was he. Definitely worth a try, if possible. Sex is one of God's gift to us. And with all we go through, we sure can use all the gifts we have. Can't believe it can't be given to us, even by prescription."