Hi
I picked up my prescription from the doctors yesterday and I’ve been given generic Exemestane this time, I’ve always had branded Aromasin before.
Having had a difficult time on generic Tamoxifen, was much better on Nolvadex D the branded version until they stopped making it, I wondered if any of you are on generic form of Exemestane and if so what your experience is compared to Aromasin.
Many thanks
Jan
Hello Jan
I’ve been given a generic but haven’t started taking it yet. I’m feeling a bit nervous about it too as I’ve only ever had the branded one.
I’ll let you know when I start on the new pack of pills.
Good luck
Anthi x
Hi Anthi
My pack is unopened at the moment, just got a couple of Aromasin to take.
Maybe we could compare notes?
Jan xx
Hello Jan
Yes definitely. So when exactly are you starting on the generic? let me know and I’ll do the same.
What make is your generic? Mine is Teva.
Best wishes
Anthi x
Hi Anthi
I’ve got a few more Aromasin than I thought so I’ll be starting my generic on Thursday. Mine are Actavis. I keep telling myself they won’t be any different. I hope so.
How much longer have you got to do on medication? I should finish, unless my onc changed his mind, a year in December and, to be honest, I can’t wait. I’m finding this last year or so really difficult for some reason.
Love
Jan xx
Hello Jan and Anthi,
I started on the generic exemestane (mine is Teva) about two and a half weeks ago, almost exactly a year after switching to Aromasin from tamoxifen.
I’ve been back to the headaches, nausea and slight stomach upset that I had when I started the Aromasin, which seems really odd. It is starting to settle down now and I seem to remember that it took 2 - 3 weeks last time too. I’m having more hot flushes but I think that is because the heating at work is a bit erratic at the moment rather than anything else! So far I haven’t noticed any difference in my joints.
It will be interesting to see how we all fare on the generics and whether the different brands make a difference. I was better on Nolvadex D than generic tamoxifen but managed to settle into the APS brand, which my pharmacy used to keep for me.
Eliza xx
hi ladies,
so far i have not been changed to generic but i am guessing it is only a matter of time so i am very interested how you get on. i struggled at first on aromasin but now am used to all its little quirks, and the thought of starting all over again makes me quite nervous.
best wishes
Annie
Hi
I wondered if the generic form might bring the initial side effects back, Eliza. When I first started on Aromasin I was so stiff most mornings that I had a job getting downstairs, I also have nausea which has never gone away. The stiffness went away after about 3 months. I have migraine and so I take medication everyday to deal with that, although it did make my migraines worse initially. I was much better on Nolvadex D, in fact it’s the best thing I’ve taken. Generic tamoxifen was awful for me and I’m trying to keep an open mind with this generic Exemestane and not let my tamox experience influence my thinking.
Hi Annie. I find changing anything very difficult, I think we have enough to cope with to be honest without our medication constantly changing, especially when you’ve got used to the one you’re on. I’m very apprehensive about the generic Exemestane but I’ll be taking it towards the end of the week so I’ll soon know how it affects me. I’ll keep in touch and we can all compare notes, although there’s no guarantee of course that it will affect you in the same way.
Love Jan xxx
OK - Jan so Thursday’s the day. With other medications I take I seem to be given a different generic every time I have another prescription and we may well find we are given more than one different make of generic exemestane over the months.
Jan - do you mean you experience nausea constantly with Aromasin or just after taking it. I usually feel nauseous about an hour after taking my Aromasin tablet but the nausea goes away pretty quickly.
Eliza - I see that you’re on the Teva generic exemestane. You also mention that your nausea has come back. Is that constant -I mean all day ?
I’ve been on Aromasin since July 2007. I also had extremely painful, stiff joints at first which are now quite a lot better. However, I have borderline osteoporosis as a result of the Aromasin, and have been on alendronic acid for nearly a year to try to improve this situation. I have a bone density scan scheduled next week to see if there’s been any improvement.
Also my hair which came back thick and strong after chemo has started to get very thin over the past year and to recede at the temples - like men’s hair does ! Wonderful.
My five years finishes next July but my onc mentioned the possibility of continuing after the five years. However, that depends largely on the state of my bones.
Good luck everyone and keep in touch. Anthi xx
Hi Anthi
Yes Thursday’s the day. I hadn’t thought of the fact that we may get different generics but I suppose it depends on what is available at the time. We’ll have to let each other know if we are changed.
No the nausea isn’t constant but comes in waves throughout the day, some days I hardly get it and then others, like today, it’s quite bad.
Do you thing that it’s exemestane that’s affected your hair?
I didn’t have chemo. I’ve noticed over the last couple of weeks that there seems to be a lot of hair in my hair brush, I can’t say I’ve noticed it getting thinner but I’ll keep an eye on that. I’ve been on exemestane for just over a year now.
I do have a white fluff growing on my face and I found some quite long dark hairs too, scary!!! I use an epilator for my legs and there’s a facial cover to put on it so I’ve tried that and it seems to do the job. Not the most comfortable thing to do but better than facial hair.
I had a DEXA scan and my bones were OK but I take Adcal D to protect them.
My 5 years is up in December next year. You’re a bit in front of me.
Best wishes
Jan xx
hi Jan/Anthi
Just like to add that i have found my hair comes out alot easier since being on aromasin, and Jan , like you i still feel nausious when i get up in the morning ( rather like morning sicknes ) but fortunatly it goes off fairly quickly. i still have all the aches and pains but have learnt to put up with them . i have only got another 9 months to go so i am really hoping that i can stay with these. how do you feel about coming off them,? i feel really worried, its like the insurance policy expiring, i have even thought about asking to go back on tamox after. there seems so much conflict now on how long you should stay on them.
hugs
Annie
Hi
I’m on exemestane and the chemist has agreed to keep getting arimisin for me as I’m allergic to lots and we’re nervous about what will happen with the new generics. Not looking forwad to when it stops… have at least 4 more years to go!
I feel sick if I get hungry and find nibbling bits like carrots and nuts and raisins helps it keep off. A bit like morning sickness! I crave sweet things now and am having to fight it as I’m putting weight on!
My hair is also thining a little and I’m still a bent old lady shuffling along 8 months after starting. Also now have periphrial nueropathy (spelt right?)
Small price to pay to keep anything away as I have an 8 year old.
I’m hoping I will get used to it,
love to you all x x
Hello again
Jan - yes I’m sure that it’s the exemestane making my hair fall out. It’s listed as a possible ‘common’ side effect but my hair was OK for the first three years. It’s only started to happen in the last year.
Oh yes - I’ve got the facial hair too - and I forgot to mention the dreadful hot flushes and sweats.
Annie - despite all the side effects I don’t really want to come off them at the end of the five years. I feel much safer being on them. My onc has said that they’re currently thinking of offering aromatase inhibitors to women for longer than the five years as long as their side effects aren’t too bad. I don’t think doctors have any idea really how long we should stay on them - it’s just that the clinical trials were done for five years, and - logically - if you think about how the drug works - we should be able to stay on them for ever.
Take care everyone and keep in touch . Anthi xx
Hello Anthi
I’m on an AI,Letrozole, after 5 years of Tamoxifen but I was told in April that I was to be on it for 5 years, thats another 2 1/2 years to go.
I am suffering with my mouth at the moment which started 6 months after starting on Letrozole which has been diagnosed as Burning Mouth Syndrome and its thought that it is due to Letrozole so I am going to ask if I can change AIs.
I always said that I would take anything they wanted to throw at me but BMS has thrown me a bit as it is quite unpleasant and apparently is not curable, they can only treat the symptons.
Hazel
Hello Hazelmary
That sounds nasty. I hadn’t heard about that side effect of letrozole. I do hope they can find something to relieve the symptoms or that they change your AI.
Best wishes
Anthi x
Hi Anthi,
Like Jan the nausea comes and goes throughout the day for me. It is definitely getting better as are the headaches, so hopefully they will go completely soon. Once the initial side effects were past I only had nausea if I didn’t take it with/just after food (breakfast). I haven’t noticed any improvement over time with the joint pain/stiffness, but it isn’t too bad really.
Exemestane is definitely causing my hair to thin.
I too am taking alendronic acid (and the Adcal D3) as my dexa scan showed slight osteopenia. Fingers crossed your scan next week shows improvement.
Hope you get the switch you’d like, Hazel. The BMS sounds horrible.
Eliza xx
Many thanks Eliza. I should get the DEXA scan results about a week afterwards so I’ll let you all know what happens.
Anthi xx
Hi all
Hazelmary - Your Burning Mouth sounds very painful. Letrozole didn’t suit me either. I have to say that I’m better on Exemestane, well at the moment, we’ll see about the generic!!!
Anthi/Annie - At the moment I can’t wait to finish taking my medication. I have 13 months left to go so how I’ll feel as the day comes closer I don’t know. I hadn’t heard about staying on them longer than 5 years.
KatieF - I just nibble bits when I’m feeling sick. I don;t particularly crave sweet things though but I find that I really don’t want to eat a ‘proper’ meal with potatoes and veg. I eat mainly salads and I find I’m fine on that.
I feel like a little old lady but my aches and pains have all but disappeared to how they were when I first started Exemestane. I just hope the generic isn’t going to make them return!!!
Love to all
Jan xxx
Hello everyone
Well - today’s the day and I’ve taken the first generic exemestane tablet.
I had my bone density scan yesterday and the extremely nice radiographer gave me a printout of the results straightaway. I have an extremely small - marginal really - improvement which I’m very pleased about. It’s tiny, but means that the alendronic acid, which I’ve been on for a year, is doing some good.
Take care everyone
Anthi x
Morning Anthi
Good news about your bones.
I’ve taken my first generic this morning too. It’s a waiting game now. I noticed that my generic tablet doesn’t have a nice shiny coating like Aromasin. I was told with generic tamox and Nolvadex D that it was the coating and the fillers which made the difference, the drug itself was exactly the same and not the problem. Fingers crossed.
Good luck
Love to everyone
J xxx