can anyone help?
I recently had this sent to me
the request is for anyone who has been in this situation to give some feedback on what they decision they made and why.
"Have been on Arimidex now for nearly 5years.
Side effects haven't been that bad for me except for aches in my legs and sometimes my arms - but honestly they haven't been too bad.
If you stop taking it however for a couple of days then go back on it the pain is quite strong.
Towards the 5year mark your hair starts to fall out/thin out.
I am actually scared to wash it as it falls out in clumps (not as bad as during chemo)
My curls have completely gone.
The question I ask is do I stay on it for another 5 years as my oncologist says I can if I wish or do I stop in August? He says it's up to me.
My hair may stop falling out if I stop and will my curls comes back??
My bones will improve hopefully but in the back of my mind there is that fear of getting the cancer again and I don't want that.
Couldn't leave my little girls, my family and my good friends."
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Comments
DO OR DON'T
HI Marls -
It would be good if the doctor gave you some solid information on whether or not continuing for another 5 years is useful, valid, found to be extra insurance or the like. Just saying it is up to you is of no use unless they provide some good solid evidence and information as to why you would or should do so. Perhaps you can google the drug or the manufacturer and see if there is any reserach information available to give you some assistance.
Not good that the oncologist is just leaving the decision up to you - is there any support group or counselling service available to help you with this type of decision?
Jaci
Tricky ...
Hi Marls ... it's a tricky one ... although your very last sentence makes me suspect I know what you will do. I was recently going through the choice of going off Femara (which is an aromatase inhibitor like Arimidex - different pharmaceutical company) and back on to Tamoxifen because of the harsh sides effects I have been experiencing on Femara for the last nine months.
My Oncologist was quite ok if I changed back to Tamoxifen - BUT it would have increased my risk of recurrence - (only ever so slightly in my case) - I gave it a lot of thought, but just couldn't do it. So, I'm still on Femara - for now anyway. Maybe you can discuss with your Oncologist a year-by-year plan, rather than commiting now to another five years. Is that possible?
Good luck with your decision - you'll do what is right for YOU. Kym x
Hi Marl
I am also on Arimidex and due to go for my 4 year check up, 3 on arimidex, but last year i did ask my doc about the 5 year mark, she did say if this was your 5 year mark, then we would suggest stopping it, but as i had a few more years on it, that things may change, i'm not sure if Arimidex is still a new drug, and therefore even the doc doesn't know much about ongoing treatment with it, however i am due to go for my yearly check up next month, and am going to try and get a bit more information, i think your doc saying it is up to you, is a bit slack, as although the final decision is up to you, a bit more information on the continuing use of it, would be good to help make that decision. good luck and keep us posted on what you find out or decide. Take Care moira