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Hormone therapy struggling in 4th year

SilvergirlSilvergirl Member Posts: 4
edited June 2021 in Online Community Info
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


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Comments

  • AfraserAfraser MelbourneMember Posts: 3,913
    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. 
  • FLCloverFLClover Sydney Member Posts: 1,433
    All I can say is you’re definitely not old, and this medication is hard work 😩. But it’s keeping the cancer away. Maybe talk to your onc about changing your antidepressants or AI to another one?
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,321
    @Silvergirl the AI thing is a real lottery. I could not tolerate Letrazole and ditched it after about 9 months. I felt like shit all the time. So, I switched to Aromasin. No good either. My last option was Exemestane, so I gave that a shot. I can't say I'm pleased, but I feel less desperate and my onc is happy that 4 years after starting the wretched things, I'm still swallowing one of them.
    It's really possible that what I was suffering in the early days was some pretty nasty long term effects from my last round of treatment; which might explain how I found the drugs I've ended up taking more tolerable--could just be time. 

    Having had one recurrence, I'm pretty motivated to avoid another and these foul pills give me the best chance of doing that. It's not ideal, and I wish that I could spend a couple of months feeling 'normal' but I think the damage is probably done now.

    By the time I'm your age, I'll have done my ten years. I shudder to think what sort of condition I'll be in by then, but hopefully I'll still be around to find out. MXX
  • Julez1958Julez1958 SydneyMember Posts: 475
    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.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,146
    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
  • SisterSister Adelaide Hills, SAMember Posts: 4,960
    I'm coming up on 3 years and have had a helluva ride on Letrozole.  I've stuck with it because it is supposed to be the most effective for my bc.  My onc would let me take a break but he agrees that it can be harder to go back on.  It is getting a bit easier.  Exercise definitely helps but I know how hard it can be to A) fit it in, and B) to do it when you're in so much pain and you injure so easily.  Go to an exercise physiologist who specialises in cancer treatment to make sure you're doing the right things, the right way.  You can get a health care plan for it.  Even if you don't continue with them, you'll get the right steps to do elsewhere.  Try Encore through YWCA.  There may be other things local to you.
  • TempleTemple Melbourne Member Posts: 42
    Hi Silvergirl
    I remember my terror at having to take an AI and the list of side effects. I started off well but unfortunately 18 months in I am feeling the joint aches and hope this doesn’t get worse.
    I am dealing with insomnia and hot flashes and hate the memory issues.
    My oncologist doesn’t believe in side effects and flatly doesn’t want to know  I don’t discuss them. Or anything else. Has the personality of a pot plant though competent in oncology I guess.
    I have read the side effects recede once you finish but I fully understand how you feel and the will to return to the life you had otherwise expected. I never expected to age prematurely and the change in me is significant. 
    I am 18 months in. I know I am the only one who knows what it feels like, the difference it’s made and that everyone who knows me thinks nothing has changed. 
    You’re nearly there and I congratulate you and wish you the very best. Thank you for your post. 
  • FLCloverFLClover Sydney Member Posts: 1,433
    @Temple your oncologist doesn’t believe in side effects?! 😳. That’s pretty ridiculous. I would change my oncologist 🤔
  • SilvergirlSilvergirl Member Posts: 4
    Hi Temple, I know what you mean about feeling you're the only one, a friend was diagnosed with BC, had a mastectomy, chemo now hormone therapy, she defiantly gets it, other friends can only sympathize.
     I tell them about the side effects of the meds, they listen but can't see a physical change and usually can't help with the phycological for long, they end up avoiding the issues after a while because they don't know what to say.
    Its good to talk to someone who can say "I get insomnia too and I never was anxious before but now Im anxious all the time and I take a sleeping pill every night!" You're not alone, and I've found this forum is a good in giving me hope and support.
    With regards to my oncologist, I've always thought her job was just to get me through the treatment, jolly me along as she puts it! I think she listens to my complaints, she does acknowledge there are side effects then writes a script to fix the problem, and see you next time!
    She doesn't sympathize, she doesn't go there, I go to a phycologist from the Cancer council for that! They were very helpful in getting my head sorted, they understand the journey of BC and side effects. 
    I want to get to the finish, I want to know I've done everything I can to prevent this hideous disease coming back.
    I remind myself of why Im doing this and keep going. 
    I wish you all the best, it can be a long journey (hate that reference, none of us want to go on it) but hopefully we'll all get there and find some normality at the end.
    Hope Ive helped you as you have me, all the best, congrats on 18 months!

  • arpiearpie Mid North Coast, NSWMember Posts: 6,146
    @Silvergirl  - WELCOME TO THE BLOG (that no-one really wanted to join!! :( )  Yes, you can only 'complain to your friends' for 'so long' before they get that 'glazed look' in their eyes - Oh Here she goes again ..... so I rarely mention my aches & pains any more ...  I try to remain as active as I can (tho I hate walking - mine is mainly kayaking ....)

    Great that you got help from your psychologist .... cos it really DOES muck with your brain!  And that Damocles sword hanging over your head re recurrence .... never really leaves either!  :( 

    I keep reading that some Oncs are even recommending just continuing with the AI treatment, even beyond the recommended  5-10 years ..... I'll decide that when I get there!!

    @Temple - I had a prat of an Onc like that early on too - and changed Oncs.  I now have a lovely female Onc (who is treating both my husband and I) and she is VERY receptive & sympathetic to our side effects (particularly the major ones) & is very active in trying to abate them.  She immediately changed me to a different AI & 6 months after that, to another one again.  I understand that she also had cancer earlier in her life - so understands it so much better than those Oncs who are only parroting what they've been taught, read about or been told by patients.  But it is pretty obvious that your Onc is not listening to you .... so you really should look at getting someone who is 'on your side'.

    All the best to everyone xx

  • ArtferretArtferret MelbourneMember Posts: 259
    Hi Silvergirl
    Like you i am in my 4th year as well with one to go. Countdown has well and truly begun! I also have copped a fair bit with side effects despite being very active exercise wise. I am currently on my drug break from letrozole and still waiting for a lot of things to ease. Some take longer than others like all the joint and muscle issues. I also have the added problem of low thryoid activity, hereditary, and would explain a lot of what i have experienced in the last 12 months alone. Couldn't figure out why things ramped up 100 fold. When i see my GP this week I'll find out whether i need to be on meds for it and if i do I'm hoping my last 12 months won't be as horrendous. I finish in November next year and would like to be able to take the last 3 months off but i don't know if my body will let me last that long as i usually take it off from June.
    Think about taking a 2 to 3 month stretch off in your final 12 month peroid. It's more effective than 1 month as it takes round 6 weeks for the drug to exit from your body. It's after that period of time that i see actual improvements in my body movement, sleep habits etc.
    Best wishes Cath
  • TempleTemple Melbourne Member Posts: 42
    I did try to change my medical oncologist in 2020 but there was a wait of over 5 months according to my GP. I am appalled that she behaves in a far less dismissive manner if my husband is present at the appointment. Not good enough!! Maybe I will try again to change. Otherwise we could have another 8 years together. 😳😆
    Strength and respect to all of us on the AIs and those approaching their finish, I’m amazed and salute you. Xxx
  • arpiearpie Mid North Coast, NSWMember Posts: 6,146
    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!  

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