Ive been taking Aromasin for just over 4 years along with medication to help me sleep and for depression and magnified anxiety. I have back ache, stiff joints, hot flushes and struggle to think straight and get my words out. I'm not sure what feeling normal is like anymore, is this the medication or how I am now? I am 64 years old this year, I exercise, maybe Im just old now.I haven't had online discussion before when I went through surgery, chemo or radiation, although I did look at discussions and that helped. Im finding now that Im needing to know how others have managed through the long years of hormone therapy. I have had breaks of one month every so often but I find its harder getting back on the Aromasin after a break as I don't get much relief. My oncologist has said as long as I do 9 months in a 12 month period that's okay but it gets harder to go back on it. I would like to know how others have managed to finish 5 years of hormone therapy or 10 years (amazing women, my hat goes off to you all) Sometimes it feels like I'm the only one doing this, I know I'm not.Also how does your body and emotions feel after finishing hormone treatment, like how different do you feel? How long did it take to realise you were better or doesn't that happen? Is there much or any difference?I guess I'm living in hope that I'll finish and not need other medications when I finish hormone therapy and that my body and emotions will feel better. Thanks for your input. X

It is important for medical professionals to acknowledge what patients are experiencing even if they are powerless to do much about it. I think many of them refuse to do so or brush it off because to admit it, is too difficult for them. A perfectly human reaction, I guess, but one which many need professional development with. In the end, it is my choice to continue with the AI. But it is my oncologist's job to recognise and acknowledge the side effects, record them, discuss them, and try to assist in finding ways to help me manage them. As I have said in the past, I have been very happy with my oncologist on this front - he recognises the issues but is also very open in admitting the limitations of current treatment in this regard. We're all hoping something better comes along but just because this is all we have, doesn't mean that it is okay for medicos to pretend all is rosy. To refuse to see the problems, is to deny acknowledgement of the person who has them.

My oncologist stopped my hormone therapy at my yearly checkup in February this year. I had completed 7 years and 3 months on a combination of Tamoxifen and Letrozole. In answer to your question about how does it feel after stopping and do you feel better etc, in my case, the answer is yes.The lack of estrogen was resulting in many soft tissue (tendon) injuries that just wouldn’t heal for me. I did wonder if it was just my age (I am 55 now) but it seems that as the time off the medication has gone on my body is repairing itself. Mentally I am happier and calmer. My pain is gone. Hope that helps to know that your body can function more normally again once the hormone therapy has done the important job of reducing the chance of recurrence. Take care and best wishes for your last few months of it. xxx

Dear @Silvergirl You’re not old, bits of you just feel that way as my GP once said (I’m 75). Your medication is hard work but you are almost there, if you are doing 5 years! Some people manage better or longer or both, because they don’t experience the same side effects - I am in year 8 of Femara, and while I have side effects (vaginal atrophy, a bit of bone thinning) I don’t have any pain or fatigue. I can do it because it’s easier! My admiration is for those who do any amount of time under debilitating circumstances. Give yourself a pat on the back, you deserve it. I can’t say how it feels when you finish but at least there is the satisfaction of knowing you’ve run the course and done all you can. Exercise may not feel like it’s helping but it does. I hope someone else can give you some joy about improvements when you finish. Best wishes.

Hi Silvergirl,I am only 6 months in to Letrazole and so far so good.I do know from what I have read that a significant proportion of women have adverse side effects.So congratulations for making it to 4 years!I liken it to a marathon , you have got this far, and the finish line is in sight.The pill does have a real impact on the likelihood of recurrence so seek the advice of your medical team to help you finish this marathon.

Definitely not old!! Welcome to the forum @Silvergirl - well done on doing 4 years on Aromasin! I am at 3 years now - Letrozole, then Exemestane and currently Arimidex (last 2.5 years.). I was mid 60s when diagnosed & went from being a relatively fit, 'ok' sized lady - to now feeling like I am 80 & weighing an extra 10kg! :( My aches & pains 'come & go' ... I haven't had a break on Arimidex yet .... tho did on the other 2. We live in hope that when we stop taking the tablets, that our bodies will return to some sort of normality ...... I hope so!Take dare & all the best xx

Hormone therapy struggling in 4th year

24 Replies

arpie
Member
4 years ago
@FionaM. Welcome to the group - the club that no-one really wants to join! Tell us a bit more about yourself - what you had done & what treatment you've received so far ..... BC type? chemo? Rads? General area where you live (you can add it to your profile) so we may be able to point you to health professionals in the area xx

Are you able to discuss your concerns with your Onc - see if you can have a break or try a different AI?

No-one likes taking unnecessary meds .... but when they contribute to longevity .... we sort of put up with it! I have been known to take the 'magic oil' to help me sleep & take the edge off the meds induced pain .... and it really does help - so see if you can chat to a Dr about this.

All the best for your Mammogram - it can be a bit daunting - as it sort of 'relives' the initial MG ....

take care xx
FionaM
Member
4 years ago
Oh, rats......
I'm 5 months in, on anastrazole and zoladex, of what I'm told will be 10 years. Not loving the sound of any of your experiences- its already doing my head in (going hot and cold, skin prickling, nausea, insomnia, mood swings, anxiety, brain fog, carpal tunnel). I'm 51, and was working for myself in a high demands job in terms of cognition. I'm not in a position to retire, so somehow have to find a way through the side effects. Not much is helping, but I've been resisting asking for medications as I tend to react to many things, and am just worried about yet another layer of side effects.
First mammogram coming up next week, and first appointment with oncologist since Feb the week after. Hoping they'll try something... not sure I have 10 years of this in me.

Thanks to everyone who posts information to the online network. I've not posted before, but have learned from others experiences.
Keeping_positiv
Member
5 years ago
@Temple my above comment is in response to your comment. :)
Keeping_positiv
Member
5 years ago
I was also told similar by my GP when I wanted to see an Orthopedic Surgeon and a Endocrinolgist at their private rooms. I had been on the public waiting list for over 10 months, and was coming to the end of my tether, so I asked my GP to refer me privately and her reply was similar to your reply that It would take at least 6 months for an appointment privately. Guess what? I went off and asked some people I know for some recommendations, and rang and made both appointments and they were within two weeks. I then went back to my GP and surprised her with my own research and I then requested she gave me the required referrals She said she was surprised I got in so quickly, I wasn't.

Some GP's really are not on top of how long the waits can be, unfortunately you need to be proactive and do your own research.

I go through the public system for my oncology appointments, and some oncologists I warm to more than others, but their advise seems to be the same, so I make an allowance for bedside manner, it just doesn't really phase me these days, and probably has made me more resilient and tolerant. I am near the end of my yearly check ups so I wouldn't bother changing to go privately, but it can be difficult to build rapport if seeing a different oncologist each visit.

Hoping you find one that suits you and that is nice to you whether your husband is there or not. Best wishes.
Silvergirl
Member
5 years ago
@Artferret I've decided to have a break, maybe 8 weeks, maybe longer? The longest break I've had is 6 weeks but that was after 13 months, like you I didn't know I could have a break back then! Like you've said, there's no point on dwelling on it when I get back on it, Ill deal with it, I'm nearly at the end! Thank you, all the best. x
ChezaH
Member
5 years ago
Yes I agree look for another oncologist you don't have to put up with that while your going through this. Hugs Cheryl xx
Artferret
Member
5 years ago
@Silvergirl
I initially lasted 19 months when i first was on the drug until i found out that i could take break. I remember when i got to the end of my first 8 weeks off i had a meltdown about going back on it because i didn't want to feel the same way again. It's never easy going back on it. Now i just do it, doesn't pay to dwell on it.
I don't take the full 3 months, the last year and this it's been 10 weeks as I've found that works for me. Being able to say 'next year is my last year' is an amazing feeling, the light at the end of the tunnel. I know my body is not going to be the same as before but I'd like it to be better than what it is now, even though i know arthritis is creeping in of its own accord. Use it or lose it is my motto as well as reminding myself that painkillers are there to be used and not just looked at. I tend to use them as a last resort and then wonder why i don't take them more often as i feel so much better when i do. Ah well we all have our own coping mechanisms, it's a matter of finding what works for you best.
Take the 2-3 months off, it'll be worth it and when it comes to going back on it remind yourself that next year you'll be kissing goodbye to it forever.
Cath
Silvergirl
Member
5 years ago
@Artferret, Its good to know that someone is in their 4th year as well, the countdown has defiantly begun and well done to you! I have thought about having another break but I didn't want to lengthen the time on the exemestane, although I may need too. I usually have one month off and don't notice much relief, two- three months would be great but I may not want to get back on them! How do you go getting back on the letrozole after three months break? Thanks for your help
All the best x
Stork
Member
5 years ago
I have been on tamoxifen for the past four years no problems
I saw my oncologist last week she is happy with my progress her recommendation is to take it until next year then she work out the best treatment for me
Best Wishes Stork
arpie
Member
5 years ago
Are you in Melbourne city, @Temple or outlying town or rural? Members in the area may be able to Message you with suggestions. I'd be surprised if ALL of them have a 5 month wait .... I reckon a well worded email to a few of them should get you an alternative Onc to choose from. Good luck!