@Amazonian, sorry to steal your thread! I am definitely interested in the genetic testing for drug metabolism. I will have a look into it. I seem to be very sensitive to most medications, and don’t tolerate most antidepressants, opioids, or benzodiazepines. So I stay away from these.
@kmakm, Kate, lovely to hear from you and I am pleased you are finally making progress. I am certainly finding it all a bit challenging and also trying to find the best way ahead. Maybe acceptance is all we can do. I am doing everything else I can. Eating well, exercise, I have stopped drinking alcohol altogether as it sends my night sweats through the roof. @kezmusc - atomic is a very good description of how it feels. I have 4-10/night. Thanks for your thoughts x
@EAA, I saw the surgeon Friday, who basically to every side effect I had said, yes that’s common. I am actually post-menopausal, and was first put on Aromasin which within a week I could hardly walk with severe bone pain and had the same in my hands/wrists with associated weakness, where I couldn’t lift the jug to pour a cup of tea or lift a full drink bottle to my mouth. My then oncologist (I am now living in Canberra and have a new surgeon and oncologist), said that I would likely have similar side effects on the other AI’s so went straight to tamoxifen. My new surgeon thinks it likely I will be told to stop tamoxifen and try another AI again. @Wonk, yes, I remember we started this at the same time and have wondered how you are getting on. I feel none of this side of things is openly discussed prior to the start of any treatment. And I certainly feel it is pretty much brushed under the carpet once it occurs. I also have ongoing pain from my surgery, which they now say is from radiation scarring and likely it will continue for he next at least 2 years, possibly forever. That was never discussed with me either. I feel I am just told to take another pill to counteract the side effects of both the pain and effects of tamoxifen. I have also felt such despair that I don’t want to ‘be’. As you say-ironic considering what we have been through.
I see see my oncologist at the end of this month. Hopefully she will have some insight for me. I will definitely be stopping tamoxifen, so looks like I will go back to AI’s. let me know how you get on with Arimidex. All the best.
Don’t get me wrong, I am grateful to be here. I just think more honest information prior to treatment would be helpful. Because survivorship is not all it’s cracked up to be.
M x
