goodbye arimidex.. but what next?

hi, I am due to see my oncologist on Thursday about my problems with arimidex and am now starting to feel nervous. I want to ask the right questions and get some answers but am also scared what I will be told. It is such as balancing act of wanting all the facts however hard they may be to face but also the fear of knowing and living with the answers. I am still interested in feedback from people who have had arimidex and could not get on with it and how they managed on aromasin or femera or were they advised to take something else. I can normally cope quite well with dx but as the appointment draws nearer it is like I am at the stage of dx again and waiting for treatment or results ! I am 18 months after dx

Rach xxx

Hi, I had a mild allergic reaction to Arimidex so can’t comment on its effects but I was started on Femara and apart from a major change in the texture of my hair and the occasional ‘heat wave’ I don’t seem to have any major effects from this. My hair, always fine and soft but with some volume suddenly went floppy and ‘I lost my waves’ so that my hairstyle has been changed to accommodate these changes. In the beginning I did have some insomnia but that appears to have settled now.
I would try to not get so anxious about meeting your Oncologist to discuss the hormone therapy options; you have had diagnosis and treatments to get rid of the cancer and RT, hormone treatment and even chemo, if you had that, are all to help prevention of recurrence.
Might it help yo to write your questions done before seeing th Oncologist - that way you should not forget any points where you have concerns.
Good luck for Thursday, but keep in touch before then if you feel talking about your concerns here may help.
Hattie xx

I changed to Aromasin last week so it’s a bit early to tell whether the side effects are any better or worse than Arimidex. I seem to remember that it took a while for the side effects of Arimidex to become a problem so I will have to wait and see how I progress with this.

Thank you Annie and Hattie for your replies. i am definately going to write some questions down before Thursday. I was having a bit of a wobble this morning I think. Also my anxiety was probably associated with my dad who supported me all through treatment and who can longer be with me when I go to the hospital.I felt so sad that he has gone.

R xx

Hi Rachy

I started on Tamoxifen last July and did not get on with that one so I was changed to Arimidex in Sept, I felt terrible on it all the usual aches, sweats, really bad pains could hardly walk.

I asked my GP to take me off it but she wouldn’t.

I could hardly walk by the time I hobbled in to the Onc in March, I burst into tears and said I couldn’t stand it, so without hesitation she put me on Aromasin, I feel much better now and went to see her again in June, to tell her I felt better. So I have been on it for 5 months now and out of the 3 it’s the one that suits me the best. So good luck tomorrow.

I always used to have a note book and ask loads of questions that way you remember everything, I was also lucky as my ONC would always spend time and listened. Hope it goes well.
Sarah X

Hi Rach
I am on Aromasin after asking to be taken off Arimidex. I feel so much better now. Before i had pains in my hands, arms, legs and feet to the point that i did not want to put my feet to the ground and hated the thought of walking. The hot sweats were really bad and my sleep pattern… was i only slept for the max of 2 hours at a time so was always tired. I kept telling the hospital how i was feeling and they did nothing so in the end after about 1 year probably longer i said that i had had enough and that my quality of life was aweful and wanted to be changed to Aromasin. They just changed my meds and that was it. I wish that i had done it sooner but like you was too scared to ask.

Now much better, no pain in feet, or arms. Legs are OK most of the time only really ache when i have done a lot of walking/exercise, just like most people. Hands do ache a little but that could be to do with the lack of estogen. I sleep a lot better but still do wake up but on a good night twice only. I have been a lot better on Aromasin but everyone is different and you can only try and see.

Good luck and remember just tell them that you want to change if your side effects are too bad to live with but be warned everyone is different and noone can say what or how you will react with another drug. My veiw was if i felt worse i would ask to be put on another.

Remember it your body not the doctors and get it sorted and let us know how you go.

After my meeting with the onc. on Thursday it was suggested that I do not go on any more hormone supressant treatments. She said that all of the ai’s would probably cause similar problems for me. There was a suggestion of tamoxifen but that too could cause problems. Unfortunately the depression and mood swings are back with a vengeance. I had 3 good weeks after arimidex stopped and now even without it I am as I was before. It doesn’t help that I have no ovaries anyway. I was in a terrible state yesterday. Crying,clumsey v tired. When i got home from work I was so out of it that I accidently dropped a glass in the sink and a big chunk of glass went into my finger and cut it really deeply. So off to casualty I went. My gp phoned me when I was there but could not discuss my issues as got called into be x rayed. My anti depressants are up to the max at the mo so am very stuck at the moment. I am having counselling as well.

R xx