Anastrozole - how did you get on with it?

[maryehuts]

Thank you. I will do that.

[Atat]

PS

i am almost 70 and due for another 7 years of medication 

[Atat]

I used to take Anastrozole only I developed severe tendon problems, and it was changed to Exemestane which has been more better for me. I had relative small, oestrogen receptive +vet lobular carcinoma.  I had surgery and radiotherapy.  Mine was highly oestrogen receptor +ve, 8/8 therefore and it's always been made very clear to me that I must it for 10 years. I've never had bone pain.  I have DEXA scans every couple of years to check my bone density. 

I had my surgery done at one hospital and radiotherapy in another county because of severe delays at original hospital

letrozole is anotherAI, which might suit you better.  Probably a good idea to talk to your oncologist. 

[maryehuts]

I have been taking anastrazole for about 5 months now and have aches at my lower back and in the hips.  Today I decided to not take it for a week or do to see if the aches clear as they are very depressing and particularly bad first thing in the morning.  Having had a very small cancer, a lumpectomy and 15 sessions of radiotherapy and being 70 I need to know if this drug is really necessary.

[ValS1]

Hi all, I hVe been on Anastrozole since January, BC diagnosed late Nov, stage 1 nodes clear, had lumpectomy in JN, just finished 15 sessions of radiotherapy which was fine and no s/e's yet. Have had no s/e's with tge anastrozole until a few days ago, just started having bone pains along side of legs from hip down, a dull ache sensation most noticeable on waking up in the mornings, feels better when I move around, anyone else had this? I had a bone scan organised by oncologist as routine, done at the lical BUPA hospital but on the NHS, appt came through very quickly & results were normal bone density & will have another one in a couple of years. Very satisfied with the treatment from the BC team and oncology at my local hospital (Suffolk)

[Fuffs123]

Hi Minimouse

Thinking of you and sending you a virtual hug. I have not started to take the Anastrazole I've been prescribed as I have been struck with a nasty virus, following an ear infection. I am not sure whether I will actually take it anyway, although I'll discuss it again with my surgeon after Easter. I do hope you feel better soon x

[Matty2]

Stay positive Mouse.

You'll get there, a warning to us all though

hugs B x

[minimouse54]

No I felt fine I started on tamoxifen for 2 months last april . That made me ill. Then I started anastrole june till jan .after 4 months of taking it I started feeling realy poorly funny heart beats dizy sick . Im still waiting on results for heart montior. I dont feel well at all just hope I get bk right.iv had to stop taking it for now till cardio doc sorts me. I d love to get bk right and have my op. Iv got to keep my chin up and think poss. .xx have a nice day xx

[Magical_Moon]

Hello MiniMouse,
I am sorry to hear that you are having a really awful time at the moment. It isn't much fun feeling sick and dizzy. Please take care and stay safe. Fingers crossed, the results of your heart monitor test come back early next week so you can find out what is causing your symptoms. It must be very worrying and stressful and I can understand why you want to protect your daughters from the worry. The fundraising event in May gives you something to look forward to. There is time for the doctors to get you feeling better.
Sending lots of get well wishes.
M x

[Fuffs123]

Hi Minimouse

Just wanted to send you a virtual hug, as you are going thro a horrible time. Did you have these problems before taking the Anastrazole? X Francine

[Matty2]

Hi mini mouse

I was wonering how you were getting on.

Just take it easy, heart pains are so worrying. I'm sorry I forgot you hadn't been able to have your op.

I really wish you well, keep posting pplease.

Magical Moon my DEXA scan was part of the BC 'package' - I was too ill for my first appointment so phoned BCN and she both cancelled that one and got me another one- and it was all done while I was waiting for op way back in Jan. 14 weeks does seem like a long wait.

B

[minimouse54]

Hi magical moon I sent u a message but some how it went to myself lol .im not my self at mo sorry x

[minimouse54]

Hi minimouse well iv been even worse with my heart beats feeling sick and now left arm is feelinf heavy . Feel very dizzy too .I phoned cardio secertry to see if my heart moitor results was in . She said there on the way to u so hopefully I will know one day next week I cant domuch around the house feel so poorly my doc is phoninf me monday .every time my heart beats go fynny I feel heavey leaft arm and very week .and clamy .ic been told not to taje my anastrozole for now ans to wait till cardio doc sees me . Im feeling lije everything is standinf still hust want to get bj to norn and get my breast op done .I havent told my daughters about all rhis as one of my daughters lost her first baby she wenr full term . Last year and ahe pregent again due oct . She raises money for bereaveing morthers. Big due in yorkshire in may .Im hoping to go to it. So hoping they sort me out. Ill let u know results wen I get them. The waiting lol have a nice weekend all x

[Fuffs123]

Thank you Moon and Mattty.
I've decided to start the Anastazole when my course of antibiotics finishes at the end of next week. I suspect I will have to wait some time for the DEXA scan. They cancelled the op I was supposed to have to sort our my regular ear infections when the BC was diagnosed which is really aggravating. Feeling rather low and whacked with it all, as I'm trying to run my business at the same time. Good job my OH is supportive and helping out. Love to all x

[Magical_Moon]

Oops! Forgot to answer your question Francine,
I started taking Anastrozole and Calceous 14 weeks before my DEXA scan and results. I'd already been taking Tamoxifen for four months before I was switched to Anastrozole so considered it was better for me to continue taking hormone therapy rather than have any disruption.
If you have not started any hormone therapy yet, it may be more appropriate to start AI's after your DEXA scan. It depends how long you have to wait for an appointment.
After my GP referred me for my DEXA scan, I waited 14 weeks before I got an appointment at the hospital. It made me realise how extremely fast track the BC process was from my diagnosis to surgery to radiotherapy. The NHS was excellent. My DEXA scan was a much lower priority so the longer waiting time was half-expected.
All the best.
M x

[Fuffs123]

Hi all. Just noticed that my actual prescription is for Anastrazole, and not Arimidex. No surprise there then, money talks!! Be starting it shortly, after finishing course of antibiotics for an ear infection, all happening here ! Waiting to see the surgeon again to discuss whether I need another WLE, more waiting, he ho! Hugs to all x

[Matty2]

Francine I started Anastrozole and had DEXA scan after about 2 months.

[Matty2]

Thanks I may ask to try another brand

If I ask on here about side effects I will get a lot of different answers for every brand, we all seem to react differently.

beryl

[Magical_Moon]

Thanks Jane, Francine and Beryl for your kind comments. 🙂 🙂

Hello Beryl,
The brands I have heard of in the UK are Accord, Teva, Actavis, Sandoz and Zentiva. I have only tried two of them, Accord and Teva brands. I've stuck with Accord and my local chemist has made a note on her computer to always dispense this brand to me.
M x

[Matty2]

Thanks Magical Moon, very informative.

I am about to order another lot of Anastrozole, I have had Accord brand and am currently on Teva brand which suits me better. Is there another brand I could try to see if I have an improvement?

[Fuffs123]

Thank you so much Magical_Moon, what would we do without the forum! You are a lady after my own heart, I like to inform myself although I know some ladies feel comfortable just following the advice of their oncologist. I used to work for The Medical Research Council, doing the admin and HR at the Hammersmith Hospital unit. Thus, I have an interst in these things, particularly drug trials etc. i'm wondering if I should start the tabs before the DEXA scan or wait. I don't have a date for this yet. Xx Francine

[Magical_Moon]

Hi Francine,
Arimidex is the original 'registered' brand which is made by the company AstraZeneca in Cheshire. Most GP's will not prescribe this brand because it is very expensive compared to the 'generic' form; Anastrozole, which was approved for sale In 2010. Anastrozole is less than half the cost of Arimidex. Some ladies do manage to get their GP's to prescribe Arimidex but the majority of prescriptions will be for the less costly Anastrozole.
From my research, it seems that Arimidex caused fewer side effects and this has been attributed to the other ingredients used to make up the tablets. Even different brands of Anastrozole can alter the side effects experienced by ladies because of slightly different compositions of ingredients.
Remember, some lucky ladies do not have any side effects. Each individual's body reacts differently to drugs. You may be one of the lucky ones. I hope so. 🙂
I'm one of the unlucky ones and have experienced severe side effects with Anastrozole. However, my GP has managed to control the chronic pain in all my joints to some extent with Amitriptyline (for neuropathic pain). This has enabled me to persevere with my hormone therapy.
It is standard procedure for ladies to be referred for a DEXA scan at the start of taking Anastrozole. This is to get a baseline marker for your bone density so it can be assessed and monitored.
Unbeknown to me before my DEXA scan revealed it, I had Osteopenia which is the stage before Osteoporosis. I would never have known if I had continued on Tamoxifen. Switching to Anastrozole prompted a DEXA scan and action was taken to address the issue and protect my bones. I take Calceos (Calcium+D3 supplement) twice a day and will have another DEXA scan in two years for monitoring.
I can understand your worries of bone loss. With any medication you have to balance out the risks and benefits. For me, the risk of a BC recurrence frightens me much more than a possibility of bone loss, so I will continue taking Anastrozole and Calceos.
Your hair may not be affected, Francine. It depends how your body reacts to significantly lower levels of oestrogen. I have always had very thick hair, still do, and have been taking Anastrozole for one year now. Even my hairdresser agrees there has been no change in the thickness.
Try not to worry. Big hug! I know it is easier said than done.
My way of dealing with the worries of taking this potent drug is to remind myself of the much bigger picture. The drug is preventing a BC recurrence and this is my priority at the moment.
Feel free to message me. I am happy to help if I can.
Peace and Positivity,
M x
PS. My oncologist had an 'unhelpful' manner! That's why I did a lot of research myself.

[j_sol]

Hi M  -  Thank you so much for your informative reply and for pointing out not only the pros but also the cons.  I must admit that when you read the word irreversible it is pretty scary but then weighing up against the other alternatives maybe not!!

Thank you once again  - big hugs

Jane x

[Fuffs123]

Sorry, loose finger! Meant to say thank you and good wishes. X Francine

[Fuffs123]

Hi Magical_ Moon

Hope it's OK if I ask you if you have any experience of Arimidex? You are so clued up! I i have been looking at some studies that seem to show that Anastrazole is more effective than Tamoxifen in preventing recurrence in post menopausal women but I'm concerned over the side effects, bone loss, aches and pains, hair thinning. My oncologist didn't take very kindly ti me going in to this (very rushed consult in busy onc dept) and I can't say I took to her and neither did the OH! She did tefer me for a DEXA scan

[Magical_Moon]

Hello Jane,
Nice to meet you in cyberspace! You are most welcome to join in. 🙂
I am sorry to read that Anastrozole didn't work for you. Big hug.
Our experiences of these hormone therapy drugs can be so different and quite individual. The drugs are extremely potent. I needed to know as much as I could about them.
In respect of Exemestane, it is the 'mechanism of action' i.e. the binding/aromatase inhibition, which is irreversible.
The link below, takes you to the technical details of the drug, a lot of which is chemistry based information. The information was updated in 2013, so it is relatively recent.
http://www.drugbank.ca/drugs/DB00990
About a third of the way down the page you will find 'The Mechanism of Action' under the Pharmacology section. Here is an extract:

.......Exemestane is an irreversible, steroidal aromatase inactivator, structurally related to the natural substrate androstenedione. It acts as a false substrate for the aromatase enzyme, and is processed to an intermediate that binds irreversibly to the active site of the enzyme causing its inactivation, an effect also known as "suicide inhibition". Exemestane significantly lowers circulating estrogen concentrations in postmenopausal women.......

The fact that Exemestane's action is irreversible is neither bad or good. In certain cases, it may be good. Especially if permanently deactivating the aromatase enzyme is going to be the best solution to keep BC from recurring.
I've also read that Exemestane is kinder to bones and does not cause bone density loss as in the case of Anastrozole.
I hope the information is helpful.
Wishing you all the very best and good luck.
Peace and Positivity,
M x
PS. Every drug has pros and cons. You have to go with what feels right for you.

[j_sol]

Hi Mini Mouse and Magical Moon.  I hope you dont mind me muscling in on your conversation but having read you posts and was wondering if you could give me some more information that you have found with regards to Exemastane.  I have just finished chemo and have been given a prescription for Exemastane to start in a couple of weeks time, I have looked up the side effects and did notice that it was  steriodal, excuse my ignorance (dont really understand what the difference is between steriodal or not!!) but couldnt seem to find any in depth info.  I did take Anastrazole for 2 years but it didnt work for me so I guess I am running out of alternatives!  My oncologist didnt mention any non reversible side effects.  Any info you can give me would be greatly appreciated.

Wishing you all the very best.

Many thanks Jane x

[Magical_Moon]

Take care Minimouse and keep me posted.
We all learn things from each other by sharing experiences.:)
My BCN didn't know about the non-reversible action of Exemestane. I found this out by doing in-depth research about the drug.
I'm still waiting for my ECG results to come back as well as my blood tests results. Waiting is always challenging when it relates to health issues.
Peace and Positivity,
M x

[minimouse54]

Hi magical moon ill let you know wen I v seen the drug speacilist and results of heart doc I think ill ask to go on letrozole I wont take the steroidal ones id refuse too lol its so nice to have ladys to talk too it helps to stay strong knowing your not on ur own so that to you moon and matty2. Night x

[Matty2]

Hi MMouse

Sorry to hear about your op but it does show they are looking at the whole picture. Your surgeon sounds OK

I hoope you don't have to wait too long for a new date and to see the specialist drug person.

I wish you well

Thing is we all have to weigh up drugs v cancer v side effects.

Oh and Moon thanks for that info about which is steridal and which isn't. I agree with you about having a normal return after we have fifnished

LOL but as we are all changing after this Beast what is norml???

Beryl x

[Magical_Moon]

Hello Minimouse,
Wow!!! Sorry to hear that your operation had to be postponed because your heart was misbehaving! That must have been a worrying experience to go through. At least your surgeon was on the ball and kept you in hospital for further monitoring. Hope the medics find the cause quickly.
I'll be very interested to hear what the drug specialist says about whether Anastrozole is causing your heart issues. They may advise you to switch.
Tamoxifen didn't agree with me at all so my oncologist switched me to Anastrozole. Anastrozole has caused me a different bunch of severe side effects. Sigh!
At my annual checkup, my BCN asked me if I wanted to try Exemestane to see if the drug suited me better. I declined. I didn't want to take Exemestane because it is a steroidal Aromatase Inhibitor whereas Anastrozole and Letrozole are non-steroidal AI's. Exemestane particularly concerns me because the inhibiting mechanism of this drug is NOT reversible like it is with the other two AI's. I feel more comfortable taking medication when the action of the drugs is reversed when dosage is stopped.
Wishing you all the very best. Stay strong.
Peace and Positivity,
M x

[minimouse54]

Ih magical moon and matty2 .I v had to stop anastrozole as every time I took ot my heart beats funny .I went to have my op to have my inplant put in and the left breast redused in size. But my heart beat droped low and blood preasure.so the sugen said I could not have it done and I got put on cardio ward for a week. Had angygrame. And doc said I was having stand stills 20 beats . Not sure what that means. But I was sent home with a monitor for a week. I stoped anastrozole as surgen adviced me. Untill results. Im now waiting onresults. Funny my heart seems alot better now iv stoped anastrozole. But I did keep telling my doctor at my surgery it might be tablet that wasmaking my heart beat funny. But my doc said its angxiaty because I got to go for a op. I saidno it isent. I have trust in my surgen shes good. My concern was that if I didhave something wrongwith my heart then I neededto know before I went in for my op. Bur my doc said you can have your op. Icame home thinking there is something wrong with my heart itsevery everytime I took anastrozle it hust doesent suit me. I feel alot better now and waiting to see a drug specalist that my surgen as refured me too. Hope to get a pointment in post soon as I needto take something for the breast cancer . But keeping strong. Lol

[Matty2]

Sorry should have said - everyone reacts differently so really you need to work out what is best for you
B

[Matty2]

Hi Moon

So pleased you went to docs, even if it did become a bit of an adventure LOL

I take my Anastrozole between 9 and 10 at night then it means i sleep through most hot flushes (not all).

I have started taking Evening Primrose Oil and that seems to help as well, do notice if I forget a capsule - 1000mg in morniing and mid afternoon, You can take it 3 times a day.

Did check with consultant before I started it though

Having lower back pain at the moment not sure if that is Anastrozole or arthritis flare up - should go to GP but..............

Keep smiling

Beryl

[Magical_Moon]

Hi Pandorra,
Sorry, I didn't want to worry you about Anastrozole. You may have no side effects with it. Our reactions to this medication are so individual.
I had a very tough four months on Tamoxifen and was switched to Anastrozole in the hope of some relief. Unfortunately, got a different bunch of s/e's (sigh!) but I just have to persevere as I am too frightened to stop taking it and risk the possibility of a recurrence.
I wish you good luck that you have no s/e's and all the very best for your radiotherapy treatments.
Peace and Positivity,
M x
PS. I've always taken my hormone therapy in the mornings.

[Magical_Moon]

Hello Minimouse and Matty,
Just to let you know that I took your advice (thank you) and went to see my GP last week about my irregular heart rhythms.
I went to GP surgery today for an ECG and blood tests. Now keeping my fingers crossed that the results come back normal.
My appointment didn't run as smoothly as I expected. When the nurse took my blood, something went wrong with the needle and my blood squirted everywhere. Second attempt OK. Phew!
She set me up for the ECG next with all the sticky patches on me. Sat at her monitor and declared she wasn't getting a reading. I enquired anxiously, "Does that mean I'm dead?" Followed by, "Don't these sticky patches on my body need to be wired up to the equipment?"
I think the faulty needle and blood squirting mishap had affected her concentration momentarily. Bless her.
Thanks again for telling me to get heart checked.
Peace and Positivity,
M x

[pandorra1]

Hi ladies, I have just started taking anastrozole, tonight and after reading your comments wondered if you are still experiencing the heart probs. I have suffered with palpitations some time back now and hated that fluttering sensation. This was due to anxiety, wow and that was way before I had this lot to go through. I am taking mine at night but is there really any right time. Appreciate any tips related to this drug, waiting now for rads planning. Hope you are all good. Lol xxxxx

[Matty2]

I think heart mis-bahaving needs to be checked, especially with the medical history we all have.

Please do get it checked and don't assume anything 

berylx

[minimouse54]

morning magical-moon , my heart doing the sane .im going to try teva ill ask chem to put it on my notes thankyou for meassaing me back . id let your gp know about the heart beats . ave a nice day m x

[Magical_Moon]

Forgot to say, I haven't discussed the funny heartbeats with my GP. I have just assumed they are caused by the medication I have to take now. Anastrozole and Amitriptyline for neuropathic pain.
M x

[Magical_Moon]

Hi Minimouse,
Not really racing. My heart beat seems to miss a beat and then 'flutters' to get back into a regular rhythm if that makes sense. It is a funny feeling when it happens. I tend to notice it more at night when I am in bed and lying quietly.
The brand I take is Accord. My local chemist has made a note on my records to always give me this brand because when I tried the Teva brand it didn't suit me as well.
It can be frustrating trying to find the brand that suits you. When you find the kindest one for your body, ask your chemist to dispense the same each time.
Good luck and best wishes.
M x

[Matty2]

Never asked, Am having a lot of healing problems so have been seeing consultant (said side effects) and BCN who told me to check the brand as i said before.

B

[minimouse54]

what your doctor say about the funny heartbeats? mx

[minimouse54]

thanks beryl i feel a little better i think id like to go bk on my old brand of anastrozole as i was ok with that .its nice to be able to talk to other ladys who know what we are going through .xx

[Matty2]

I've only just started on this brand - no heart racing, less severe flushes, only wrist and ankle aches. Once I had been taking it for a few days everything was more comfortable.

though as I posted still stiff but I have arthritis anyway.

I haven't tried getting a repeat prescription and saying the actual brand, won't need to for another month so will see how it goes.

I also think that everyone seems to react in a slightly different way to the same drug.

Think it may be trial and error but feel you should talk to your BCN/GP as the heart racing may need checking

Berylx

[minimouse54]

hi maty2, did your heart beat like raing and did they go away once you kept to the brand that suited you best? x

[minimouse54]

hi magical-moon ,did yo have any heart beating fast while on anastrozole .i m trying to find out if its the bc tabs that are coursing it or the brand of it as the chem keeps changing my brands and if you have had any heart racing did it go away on its own ? im strugling here but stay possitve lol xx

[Matty2]

Hi there

I talked to my BCN about this and she told me to request the brand that suits me best on the repeat prescription.

I used to get painful heart beats as well but don't now

Think we are all mourning for old life. I'm still healing from op and wish I could feel my boobs like I used to -and look how I used to BUT now I haven't cancer so............

beryl

Ps couldn't sit up in bed this morning, OH had to pull and push me but was OK once I got going

[Magical_Moon]

Hi Minimouse,
I'm still getting funny heart beats.
I will have been taking Anastrozole for one year on March 1st. (Plus 4 months on Tamoxifen previously).
If my GP had not prescribed me Amitriptyline to control my severe joint pain, I would have thrown the towel in and given up on Anastrozole. I am still mourning for my 'old life' pre-BC when I had a better quality of life without enduring pain every day.
Very grateful and blessed that I am NED but the hormone treatment hasn't been easy for me at all.
M x

[minimouse54]

hi matty2 , im on anastrozole and i was wouning what brand do you find best . i had the brand tevn which i was coping well with then after four months of being on them the brand changed and i started feeling pooly heart rate beating fast .