stopping hormone therapy

hi all
haven’t posted in awhile just had my 1 year check up , recently,
consultant asked how I was doing on exemestane , since changing from arimidex, but to be honest not much diference still the same sweats joint pain etc
have been so miserable on all these drugs haven’t been able to tolerate them,
this has been my 4th lot, so after discussing this with her, she says she is quite happy for me to come off them as it only gives a 1% protection ,haven’t quite decided what to do yet, says to think about it and let her know what I decide ,
I also had my yearly mamo but it is going to be 6 weeks before I get results due to staff shortages,so am thinking maybe I should wait for the results of that before I decide, has anyone else done this, and what do you think, would appreciate any advice. Thanks Liz x

Hi Liz

I was on Arimidex from Decemnber 2003 and took it for about a year, I could not stand the excrutiationg pains in my knees, leg bones and hips, especially at night when I couldn’t even sleep. So I was going to come off but decided otherwise and went to chat with my oncologist, who put me on Aromasin. I have never looked back. I get hardly any side effects from it, just stiff ankles first thing but by the time I have walked around the house and manipulated them I am fine. I have taken it for 18 months now and have another 18 months to go.

I did go down with brain cancer last year (absolutely nothing to do with the breast cancer though, just a one off strange thing, I got Non Hodgkins Lymphoema on the back of the brain) but I have just had my yearly mammogram this week and apart from a cyst that they aspirated and I am waiting to get the results back Monday, but in my heart of hearts I know I am ok.

Go and discuss Aromasin with your oncologist, I am so glad I did. I hope I have been of some help to you. Love Roz x

Hi Liz

I have been on Arimidex for 8 months and the pains in my joints were unbearable as were the flushes. My GP prescribed Megestrol Acetate and since taking them, I have not had any flushes. For my painful joints, I take Cod Liver oil capsules and the joints are a little stiff in the mornings but the pain has gone. It took about 2 months before I felt any effect from the Cod Liver oil capsules.

Hope this helps

Margaret

Hello

I took Tamoxifen for 10 months and felt ill most of the time, people even said I didn’t look well, the last straw was when my hair started to fall out. I changed to Arimidex but seemed to have much the same problems plus bad joint pains, after 18 months I decided to discuss it with my consultant who like you said I was only getting a very small benefit, so it was decided that I would stop taking it.

I haven’t looked back and don’t to date regret my decision, only time will tell if it was the right one. It is an individual decision and one that only you can make.

I’m sure you will do the right thing.

Best wishes

Jan

Thanks all for your advice still awaiting results of mammo will wait till then ,
then will make up my mind.liz x

Hi Jan, i have only been on tamoxfen for 20 days, but already i have noticed my hair is thinning, i feel dreadful on it, and can’t wait for my appointment with the gyni to get the ovaries out and start on aromatiase inhibitors, wouldn’t you think we’d been through enough already?

lots of love

Alison

I am due to be put on arimidex next wk. I have heard so much about own awful the pain and hot flushes can be I was dreading this. However, when I was talking about this to the lady who makes the tea in the rads dept! She stopped another lady who was passing and asked her to talk to me about it! It was quite bazzare, but it turned out that not only was she head of cancer services, and tall like me, she had also had BC recently.

Anyway, she mentioned that as a tall person, she had suffered from a bad back for yrs (as I have) and wasn’t happy to be put on arimidex. Her onc also prescribed her another drug to conteract the pain. She said it was marvellous. She also showed me were her office was, and told me to go see her if I had any probs getting this other drug prescribed (should I need it).

Now I’m affraid I still had chemo brain at the time and didn’t write it down, but hoping I can tell onc what she said, I know her name, it’s on her door!, And request the drug. I will come back on here next wk when I know what it’s called.

Irene