Exemestane anyone?

Hi Ruthie2,

I’ve been taking it for just over a year and I’ve been OK with it. I hadn’t been through the menopause before chemo, but chemo started that off and then I started having the zoladex injections and Exemestane tablets. I had my ovaries removed in November and I’m still taking exemestane.

After the initial shock of missing oestrogen, I haven’t had any problems. I always think that it is worth trying a drug because you may well be absolutely fine. I know that I’ve read on this forum that some people can’t tolerate different brands of AIs, so it’s worth trying to find what works best for you.

Best wishes,

Sarah x

Hi ruthie2 Have you tried different brands? I was put on Letrozole last December, and the hospital initially  gave me Cipla brand. Within days my hands were clicking when I moved them and I had to hold furniture to walk when I got up in the  morning.  I read on here that Accord brand were good so swapped brand less than a week after starting.  When we went to tenerife at February half term i ordered my prescription and I got some Sandoz brand,  made by thr same company as Femara (the best and original) which used to be available here but no more.  These made me fell a bit dizzy,  though the joint pain improved a lot,  so I went back to the Accord brand,  and promptly had a posterior retinal detachment and bleed which Moorfields think may have been due to the letrozole.

I stopped for 6 weeks for it to heal, started,  and within 4 weeks one eye was pink, the one which was the issue before had flashing lights,  and they both felt like they had needles in them. I spoke to my doctor and asked for Femara., not usually given as it costs £92 for a month.  He agreed,  and after 5 days have almost no joint pain, no dizziness and my eyes are feeling a lot better, my legs are normal,  the swelling in my knees has gone,  but my hands are slightly achy after too long on my phone lol.

My oncologist suggested swapping to the exemestane as its different from the other AI's (it's steroidal). I thought I'd work my way through the brands of letrozole  first,  and as  long as  the Femara is ok will stick with it as its third generation and 'supposed' to be the most effective one. 

I'm on a few groups on  F.......k, and it seems that people seem to find one of them better than the others,  and one brand better too. I take turmeric to help with the side effects.  I tried sour cherry (juice and capsules) but it gave me terrible stomach pain.  Claritin is helpful for some women too, but didn't help me.  

Good luck.  My gain is 4.5% over 10 years which changes death from 1/10 to 1/16 chance so worth trying.  Another 5 years (to 10) is only 0.7% gain,  so despite what my oncologist wants is highly unlikely!

Margaret xx

Thanks @Sarah1111 that’s good to know, I’m post menopausal at 56 ( 55 at diagnosis) so didn’t really think I’d have problems With hormones  but how wrong was I, the physical se’s I can cope with it’s the low mood and depression that really got me, there was no way I was able to take them long term, I’d have topped myself first.

sarah and Londonmumof2 I have tried different brands from accord femara sun and another one I hadn’t heard of, not much to choose between them tbh. I think the exemestane is only made by one manufacturer in the uk so that sorts that out.
For physical side effects, I had the joint pain trigger fingers, sore feet ( could barely walk in the morning) but took vit d 4000 and loratadine on consultants advice and they def helped. I’m on a couple of fb groups too and tart cherry seems to be the ‘one’, haven’t tried it yet tho but I will if I need to. 
That’s weird about the eye problems, I ended up at emergency opticians earlier this year as they thought I had a detached retina as I saw flashing lights and a kind of curtain, never even thought it could have been the anastrozole. 

id heard about exemestane being steroidal and tbh, I’m not keen on steroids after my experience with them on chemo but I’ll given them a go and see what happens. I’ll let my family be my mood barometer as they have to deal with me and my moods! 

if I have to try tamoxifen then fine, if exemestane works even better but I’m not going to beat myself up if I end up with none. 
take care and big hugs xx

Hi ruthie2 there are quite a few brands to play with:)

https://bnf.nice.org.uk/medicinal-forms/exemestane.html

Hi Ruthie 

just wondered how you felt while you stopped the AI? Did you feel much better mood wise? I’m taking Letrozole and still feeling pretty down but not really sure if it’s down to the tablets. 

Xx

Hi Ruthie2,

I know what you mean about the chemo steroids! I couldn’t focus and my heart hammered away. Exemestane does not do that at all I’m pleased to say.

The three AIs that you would be offered are all third generation and equally effective:

https://ww5.komen.org/BreastCancer/AromataseInhibitors.html

I had some stiffness when I first starting taking it, but it has improved and I feel fine now. I hope your doctor helps you to find one that doesn’t cause you so many unpleasant side effects.

Take care,

Sarah x

Hi Lucy51 Have you tried different brands? I'm sure that it's possible to  have a break if you're struggling.....lots do.  I had a 6 week break after eye problems with my oncologists consent recently, and did feel better.  You've been through a lot,  and taking time out of treatment for a week or two might help you,  but check with your oncologist.  Take care xxxx

Ooh! Lm2, thanks for that, he did say he was going to specify aromasin so I’m sure I’ll find out x

Lucy51 hi ya! I didn’t feel any different really until it dawned on me about 10 days later that things that would have sent me spiralling down, didn’t. I feel bit a more in control if that makes sense. It’s not so much that I felt happier, just not as down. 

Might be worth having a chat if you can, I got in touch with a chemo nurse I got on well with as I dont have a breast care nurse.  Let me know how you get on.xxx

Thanks for the info Sarah1111 it’ll probably be a few weeks before I get them, fingers crossed it works xxx