Stopping Aromastase Inhibitors

[Jacey]

I took anastrazole for 3 months and life was hell. I made the decision to not take it and live a more comfortable life. I'm 58. Life NOW is important to me.

[Melanie8]

Hi FlatFruend member. How are you going since you stopped medication? X

[FlatFriend]

How are you doing now you have been off the meds for a while? I have just made the decision to quit Anastrazole after 2 years on Tamoxifen that was awful and a year on Anastrazole that hasnt been great either?

[Magical_Moon]

Hi,

Here is the link for the Online NHS Predict tool for cancer survival prognosis. It comes with the usual disclaimers.  You need to input the details of your BC which you will have from your pathology report.

http://www.predict.nhs.uk/predict.html

I switched the other way round to you.  Started on Tamoxifen and had a bad reaction/awful side effects so after four months Oncologist switched me to Anastrozole. Have been suffering from a different bunch of severe side effects and currently wondering whether I want to continue for another 3 years.

You may be OK on Tamoxifen, we all react differently to these toxic drugs.

AI's tend to cause stiffness and joint problems because they are systemic and reduce the amount of oestrogen in your whole body by over 90%.  Whereas, Tamoxifen only blocks oestrogen from feeding any stray cancer cells lurking in your breast tissue.

I'm surprised you were given 50% because the chances of having a recurrence still seems to be a bit of a lottery.  Some ladies take hormone therapy and still get a recurrence and others do not take it and stay NED.

The Predict tool is quite an eye opener, especially the % difference in survival between not taking hormone therapy and taking it.

M x

[BooLem]

Hi, I got diagnosed this yr with a hormone receptive lump, which was a grade 2. The lump was in the top of my breast close to the skin.
It was recommended that I did chemo (FEC-t) to try and shrink by 1mm to get lumpectomy. Lump didn't move and have had mastectomy 3 weeks ago. The lump was also still cancerous although hadn't got any bigger.
At the last minute the consultant decided against putting me on tamoxifen and opted for exemesthane (aromosin) with monthly injections.
I have been on it approx 8 weeks (chemo finished 3/6) and am starting to find the night sweats (soaking head) are getting worse. Also, I am stiff after periods of inactivity, although I hadn't connected this as a side effect.
My consultant keeps saying she will swap me to tamoxifen if I can't cope with the side effects.
Has anyone taken tamoxifen and emesthane - are the side effects much the same on tamoxifen?
Also, where are you getting the stats from? My consultant told me taking this wld mean my chances of getting a reoccurrence drop by 50% - suppose I should of asked 50% of what.

[Hazel Mary]

Hello

I did 5 years Tamoxifen, followed by 5 years Letrozole and finished that last year.

Am I back to normal, no I am not. I can honestly say my stiffness and aches and pains are worse since I finished Letrozole. I have to do about 5 minutes of stretching before I even attempt to get out of bed in the mornings and if I don't I get what I can only describe as muscle spasms which are quite unpleasant. I get up, eat breakfast, then get dressed and then go out for a 30min walk and I don't risk bending over the sink to clean my teeth till after that(yes I know that is awful) By about 10am things are a bit better but if I stand in the same position for any length of times I get stuck again. I go out again in the afternoon again for another hour walk, I live in a village so there are lots of walks I can do.

Now I did give myself some unofficial breaks from Letrozole because I was also diagnosed with burning mouth syndrome which is due to lack of oestrogen and my mouth was felt awful.

Would I have stopped the Letrozole earlier, well on one of my unofficial breaks my back was so bad that my Onc sent me for a full body scan and then the wait for the result was so stressfull that I went back on Letrozole and stayed on it. It came back clear thankfully.

I can't advise anyone what to do because we are all different but I do understand why people stop taking it but I couldn't.

[familytree]

Good on you sasscha. I will make my decision after radiation. Iaam grateful of early diagnosis and am struggling to justify taking letrozole with a 1% improvement on a 97% survival rate in 10 years. I have osteoporosis and the drug is very detrimental to it. I think I have made my decision. X

[kbmd]

Hi Sascha,

I'm a relative newbie in the C department but, I've been labeled uncooperative and difficult since I listen to what my body and heart tell me and didn't always do what doctors said to.  I started Tamoxifen about 6 months before surgery and lasted about 6 months after then quit taking it.  I was told to stay on it for 10 years --- though would likely change to an Aromotase Inhibitor after menopause (I'm 45 now).  My oncologist ran the odds of recurrence and survivability for me but I don't even remember what my percentages were.  What trumps everything is how I feel now, today.  On the Tamox, my joint pain got so bad, I couldn't hold a coffee cup.  Off of it, I feel more like myself and the joint pain is barely noticeable.  My naturopath told me there are 2 paths --- pay now, or pay later.  If I pay now, I'm miserable in the prime of my life  AND there's no guarantee I still won't have a recurence.  Pay later, I can live my life now, embrace and enjoy it  and worry about any consequences down the road -- if and when they happen, for there's no guarantee that I will have recurrence just because I stopped the meds. 

I chose to live today.  The key for me is to own my decision, be comfortable with it and not worry "what if".  Most of the time, I can do this.  Even when I start to wonder if my decision will cause cancer to come back, I realize it's still worth it to me to have today.

I like that everyone here is free to share their decisions without the judgment that often comes from the medical community and from those "mean well" people who just don't understand.  My decision is right for me but I so admire and commend those who've stayed their course and endured more than a little discomfort because it was right for them.

[catokitty]

It is a very difficult decision but it depends I guess on what the the percentage gain is. Adjuvant on line showed 10% benefit for me so I am going to stick with it for as long as it takes.  I found conversations with the oncologist confusing and she commented that adjuvant is just statistics and out of date anyway.  So what do we go by? Good luck with your decision.

Jane

[familytree]

Sounds like you really suffer on the things.. I'm only 3 months into Letrozole and am ok up to now though dont feel myself.. think that may be the rads and still in shock from diagnosis in April. One thing I have learnt is everyone is so different despite all having BC.I could not live with all you have had to through a pill, especially when you see the percentage differences they make but it seems to work foe some at keeping BC at bay yet doesn't for others so it's a really personal choice isn't it. Good luck what ever you decide.. It's not easy. Sending love x

[charhie]

Hi, I was on aromasin for 30 months , I had all the symptoms, weight gain, breathing difficulties, stiffness was awful too. I dragged myself through to the end of the treatment, and now 2 years after finishing I feel good, but one of my main feelings are that I stuck with it and have given myself a good chance for the future. The weight came off fairly easily, and everyone can see me brighter but im so pleased I stayed the course. 

hope this can help

[Sascha]

Its been a good couple of years since I last posted on here.  I left as I did not find I fitted in the mainstream box as I made my own treatment decisions and did not follow ALL the Oncologists advice and got some grief over that from people........but here i am 3 years post diagnosis!

The cancer I had was very hormone positive ER and PR......and lobular...............I took Femara initially but realised that it made me very depressed and affected mobility to the extent I could not get out of a chair without help, when it affected my breathing so that I could not walk for 10 minutes I stopped taking it.  I waited two months then went on Aromasin (Exemestane) but now some 21 months later I have stopped taking Aromasin as felt so awful on it, emotionally and physically, got so stiff it took an hour to start walking in the mornings....and again my breathing was affected. 

Now i am wondering if I even watn to go back on Aromasin after a break as my quallity of life is so much better off it and even other people notice I look and seem different, no doubt because I can sleep for 6 to 7 hours now and wake up refreshed.......whereas I never had a good quality sleep on it............I could go on ........

My view is if I can now exercise again, can now breathe more easily, am getting quality sleep again, then all these factors also reduce recurrence risk, and none are possible whilst taking Aromasin...........then how much real benefit is this drug?

I have not decided yet, but would like others opinions, especially if you have stopped or gone back after a break etc.....