Side effects on exemestane

Morning LM2, I was given exemestane after struggling on anastrozole, I did get physical se’s but it was more the mental health side that concerned me. I took it for 4 weeks and stopped. I haven’t taken it since.

I did find vitamin d (400) as well as loratadine helped considerably with joint pain. Other side effects I noticed were insomnia, weight gain, nausea and headaches. On anastrozole my blood pressure and cholesterol shot up so high my gp wanted me to take meds for these immediately, Oh and the foot pain too. But I felt so horrible in myself, going from the angry psycho b1tch from hell to wanting to stay in bed all day, i wasn’t enjoying life and couldn’t see a way to even begin to look forward to a future, I wasn’t prepared to go on at all.

I’m told that with time these will lessen, but being a wimp I wasn’t prepared to lose more months to a drug which only gave me 4% over 10 years. I truly feel I’d take my own life before I got anywhere near 5 years. 

Now, I’ve lost the chemo weight of 1 1/2 stone, I’m back running 5k and go to the gym 4/5 times a week doing a mix of aerobic weights and Pilates, my blood pressure is back to normal - never got round to the meds. I sleep better most nights, joint pain has gone tho my fingers are still clicky and I still have the ‘rolled down sock in my shoe’ feeling from the chemo. My family have told me that i’m back! I’m definitely much much better, I’ve woken a few times actually looking forward to the day! 

i have’nt told my onc yet, he advised me to give it 6 months. I’ve told myself that once I’ve lost another 7pounds to a stone I’ll try again. I might, or I might not, I’ve read many studies which say maintaining a healthy weight and regular exercise is as beneficial as the hormone blockers too. I’d rather go down that route, but that’s my decision. I’ll tell the onc or consultant my next appointment which is next July whatever I decide to do. But I know he’ll want me to try tamoxifen, my consultant doesn’t because of the side effects.

I’d personally give it a little longer LM2, maybe ask for advice as it’s such a distinct instant reaction rather than one that’s kind of built up. 

Sorry for going on a bit but hope today is better for you x

Thanks ruthie2 and nice to hear from you!  

I'm going to try taking these on alternate days for a few days,  but if it doesn't get better after the next one or two then contact my bcn and ask her to speak to the consultant.  I have allergies to certain steroids,  so it could be that (though the pain in my foot isn't a steroid issue). My gain at 10 years is 4.5%, and I did the chemo (4% gain now showing as 3.5% on Breast Predict), which she said was less important than the AI's.i don't lie how I'd feel with a recurrence if I stopped, but don't want to be crippled, half blind (letrizole gave me a retinal detachment in one eye and an ulcer in the other,  which only healed when I stopped taking it)

I know what you mean about weight gain. I gained weiht with letrozole despite eating less.  I did that too at menopause,  and think it's my body trying to make fat to make oestrogen.  I was amused to read that Aromasin contains an oestrogenic ingredient on the label, and a bit shocked that the tablets are so expensive too... The NHS pay almost £89 for 30 tablets!

Just wondering how your getting on. 

Didn’t make the connection between menopause and weight gain but  it’s so obvious now you’ve mentioned it!

xx

Hi ruthie2

I noted your comment:  "I’ve read many studies which say maintaining a healthy weight and regular exercise is as beneficial as the hormone blockers".  I looked for but found no studies on this, so would be very interested if you could point me in their direction.

I ask because my wife has thus far not taken Tamoxifen, and has substituted regular exercise and maintenance of a healthy BMI, and would like to have some reinforcement that this is a good alternative.

D

Ill have a look and see if I can find them, I know there was one quite recently, my consultant also told me about the diet, weight and exercise though I don’t think he meant I didn’t have to take them!

edited to add - just did a quick google of exercise and breast cancer reoccurrence and quite a few studies popped up.

Hi ruthie2

I don't know how I managed to miss this before.  Perhaps I discounted some studies because it mentioned exercise following chemo and my wife has not had chemo.

Anyway, this NHS article seemed quite positive:  https://www.nhs.uk/news/cancer/exercise-most-proven-method-to-prevent-return-of-breast-cancer/

Our chat has encouraged my wife, because she wants to substitute exercise and a healthy diet etc for Tamoxifen.

D

Hi Dedalus I am neither for or against Tamoxifen neither am I against exercise but some people cant for whatever  reason exercise and this type of article makes them doubt their choices. (from the conclusion of the article)I"t is also possible that women who did not exercise were unable to because of adverse effects from their breast cancer treatment".

The 2nd para of this article reads as follows. 

"May help reduce the risk of the cancer returning. But there is a great deal of often conflicting advice, so it is hard to make an informed decision".

People are indeed entitled to their own opinion and choices but this article is simply  a comment of an article first published in 2 dubious tabloids.

What do you think when you read it again? 

Hi Granny59

I note the points you make.  I am not pushing a particular strategy, I am trying to discuss and find a way forward for someone who is frightened to take E.T. and specifically Tamoxifen because of a pre-existing condition,  Everyone is unique and has to consider their personal comorbidities and find their own accommodation when it comes to the treatment of cancer. There can not be a 'one size fits all' solution because of individual complexities.

The exercise and dietary approach were today kindly brought to my attention by someone in the BC group.  I considered it and looked for appropriate sources.

When looking at articles or studies I always endeavour to select from those that have a certain bona fides.  By referring to the NHS article I believed it satisfied this criterion to some extent.  I know the article refers to tabloid newspapers, but if you dig a little deeper you can find a secondary source namely The Canadian Medical Association Journal (CMAJ) which is a peer-reviewed general medical journal.  The CMAJ, in turn, goes back to the primary research and provides an extensive reference list and a meta-analysis consideration.  I would add that I have only had time to scratch the surface since the exercise and dietary approach was first mentioned.  The studies and references do, however, look really interesting, and we will work our way through some of them.

I must say that today for the first time my wife has had a more positive view with regard to her situation in respect of Tamoxifen, and this heartens me too.

I appreciate the opportunity to discuss matters with others in this group and the opportunity to accept or reject others viewpoints.  My mind is not yet settled on any particular strategy.  I am a seeker of knowledge which we both subsequently discuss and try to arrive at a conclusion.

Kind regards

D

Hi ruthie2

I am keen to extend this dialogue with someone like you who has bravely decided to opt-out of E.T. in the present at least.  How confident are you that lifestyle changes such as exercise and diet etc are as effective or near as effective as the drug(s) you were taking?

I briefly read in studies possibly similar to those you mentioned that there is at least a 40% benefit against recurrence.  This virtually matches that of some E.Ts like Tamoxifen.  Do you believe it is as straightforward as that?

Does your obviously extensive exercising, grant you peace of mind, or are you still unable to banish the 'what if' question?  How do you manage to resolve things in your mind?

D

Hi Dedalus,

I don’t mind at all, I wouldn’t encourage anyone to take me as an example though, but I have made a decision, that for now, that I can live with and I can justify. I’m definitely not brave one bit, I do feel incredibly guilty and ashamed for giving up and certainly for being such a humongous coward for not telling my onc and consultant. My husband knows I’m not taking the AI’s but although he’d rather I take them, he’s not keen on living with person I became on anastrozole and was veering towards on Exemestane for the next 5-10 yrs. My family, (sons and parents) don’t know, they don’t need to.

So, I decided initially not to take the drug until I’d lost the weight and then I’d restart and see what happens, or I’d wait the recommended 6 months and then tell them it’s not for me and try tamoxifen. At the moment I’m undecided and it’ll probably be a case of whichever comes first.

But, I’m not confident at all, but equally I’m not confident or one bit happy about just taking the drugs, I’d say I’m more confident of maintaining some sort of decent quality of life without the drugs than with. By exercising and trying to lose weight it certainly makes me feel better, mentally and physically and the added benefit of being as effective as the drugs which were making me so very miserable! Seems a no brainier to me.

The studies and articles, as well as my consultants comments mean I can justify my decision, though I think if I did take the drugs AND exercise and lose weight my chance of a reoccurrence would be even less! I do have the “what if” question, I’m constantly questioning myself, but at least I can do so without any side effects and in a relatively rational state of mind.

I remind myself of how I was on anastrozole (I ditched exemestane as soon as I felt the side effects start), the aches & pains, insomnia and not thinking straight, my blood pressure and cholesterol so high my gp wanted me to take meds for them, I’d definitely also be on antidepressants by now too, my chances of a heart attack or stroke in the next 10 yrs increased by 10%,  my predict 10 yr survival dropped by 4% if I stopped the drug. So not only would I be taking 3 additional drugs I’d be at more risk of heart attack than cancer!

I’m not the sort of person who does what I’m told (fancy that!) I didn’t take all the steroids during chemo, nor the neulasta injections, i wasn’t told why I should, so I did my own research and decided not to, nor did I take the prophylactic antibiotics I was given when I had a cold, I was fine, physically I managed extremely well. There’s no way I’m going to blindly take such a debilitating drug for 5-10 yrs just because I’m told to, without research and even using myself as a guinea pig first. I don’t like the way I’m told I HAVE to take it!

In the end, I wouldn’t encourage anyone to copy me, but to do their own research and chat to lots of people on both sides of the argument and ultimately make the decision that’s right for you personally.