View Single Post
Old 07-01-2010, 01:21 PM   #22
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
History/General Effects

Also, in 2002 when I was diagnosed, AI's were still being tested for metastatic bc and were not given for adjuvant therapy, so they still have a relatively short history of use in terms of what the effects actually are for long-term use. Adjuvant use is the group with the longest likely duration of use.

We ARE the test group. If they don't hear much from us, they aren't going to see or focus much on any problems with these drugs -- any more than they have about the issues of chemo brain or sexuality. As long as we take the attitude that we "have to suffer" to stay alive, it isn't likely that anyone will do much about it.

For example, if the intention of using these drugs is the effect on aromatase, then what is bringing about the joint pain? Is there aromatase in our joints? And if there is joint pain where there is no aromatase to inhibit, what ELSE does the drug do that is not sensed through the nervous system but that may not be beneficial long-term? Is bone loss a side effect, or a primary effect? Are there other "side effects" that are unintended and that long-term are not beneficial that genuinely should be considered along with QOL in making a rational decision about whether to discontinue the drug or take it long-term?

A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED

Last edited by AlaskaAngel; 07-01-2010 at 02:19 PM..
AlaskaAngel is offline   Reply With Quote