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Debbie L. · 09-15-2010, 01:15 PM

Suzanne, you're not alone. The side effects seem to vary a lot from one woman to the next, both in what they are and how severe they are. I hope that the recent studies showing poor adherence to endocrine treatment will serve as a heads-up for researchers to find ways to help women tolerate the AI's, or maybe just find better drugs.

It's possible that you will eventually decide to stop all endocrine therapy in exchange for better quality of life. But you have many things to try first!

I know women whose AI-related pains have been helped by:

1. Vitamin D supplementation - get your levels above 30 or even 40.

2. Try another AI, either aromasin/exemestane or femara/letrazole. They do basically the same thing but one study showed that about 50% of women who try a different one get some relief from the side effects.

3. Go back to Tamoxifen. The AI's offer only an incremental benefit over Tamoxifen and if the other option is nothing, then Tamoxifen offers a big benefit. The studies that initially seemed to show that AI's might be better for certain subgroups like HER2+ don't seem to have played out -- it seems to be more that some ER+ cancer is resistant to all endocrine therapies, and HER2+ is more likely than most to be resistant (but no way to know for any one individual, if her ER+ cancer is resistant).

I think that there IS a big question needing an answer about duration of endocrine therapies. This is true for all ER+ cancers but especially for HER2+ ones where the synergy with Herceptin (and/or Lapatinib) seems to be a factor in sensitivity/resistance. It seems like the smaller a subgroup is, the less we know about it because few studies have been large enough to tease it out to such details, or the studies were done before we even knew the markers to see the subgroups.

We hear a lot nowadays about triple negative breast cancer being understudied and unaddressed but the same could be said for triple positive, in my opinion.

Keep us posted - what your onc says, what you try, and what works.

Debbie Laxague

09-15-2010, 01:15 PM	#7
Debbie L. Senior Member Join Date: Jul 2006 Posts: 463	Re: struggling with my AI's(i hate them) Suzanne, you're not alone. The side effects seem to vary a lot from one woman to the next, both in what they are and how severe they are. I hope that the recent studies showing poor adherence to endocrine treatment will serve as a heads-up for researchers to find ways to help women tolerate the AI's, or maybe just find better drugs. It's possible that you will eventually decide to stop all endocrine therapy in exchange for better quality of life. But you have many things to try first! I know women whose AI-related pains have been helped by: 1. Vitamin D supplementation - get your levels above 30 or even 40. 2. Try another AI, either aromasin/exemestane or femara/letrazole. They do basically the same thing but one study showed that about 50% of women who try a different one get some relief from the side effects. 3. Go back to Tamoxifen. The AI's offer only an incremental benefit over Tamoxifen and if the other option is nothing, then Tamoxifen offers a big benefit. The studies that initially seemed to show that AI's might be better for certain subgroups like HER2+ don't seem to have played out -- it seems to be more that some ER+ cancer is resistant to all endocrine therapies, and HER2+ is more likely than most to be resistant (but no way to know for any one individual, if her ER+ cancer is resistant). I think that there IS a big question needing an answer about duration of endocrine therapies. This is true for all ER+ cancers but especially for HER2+ ones where the synergy with Herceptin (and/or Lapatinib) seems to be a factor in sensitivity/resistance. It seems like the smaller a subgroup is, the less we know about it because few studies have been large enough to tease it out to such details, or the studies were done before we even knew the markers to see the subgroups. We hear a lot nowadays about triple negative breast cancer being understudied and unaddressed but the same could be said for triple positive, in my opinion. Keep us posted - what your onc says, what you try, and what works. Debbie Laxague