Anastrozole - how did you get on with it?

[minimouse54]

hi magical-moon im on anastrozole for 7 months and aving same problem with heart beats

[Matty2]

Started on Accord - now much better on Teva - still aches especially in ankles and wrists but much easier to live with, and my scalp doesn't itch.

[ValS1]

Hi, just out of interest what is the name of the different brand?

[Matty2]

Thank you eastanglian

I have just found and read that link from Cancer Research that you posted. I found it very useful and it explained just what I needed to know,

I have been taking Anastrozole since December

B

[Milliemum]

I'm so pleased to have found this thread. I've been thinking I'm imagining things! I had 4.5 years on Tamoxifen then 6 months on Letrazole which was ok. I had a 3 month wash out then started it again for 5 years. 7 months later it's a nightmare. I feel very low in mood. Everything hurts. I sieze up if I stop for a bit. My scalp is really itchy and is covered in lumps. My hair is falling out. My back is really itchy. My cholesterol is sky high. And I'm utterly exhausted. I can hardly walk any distance and walking is what I love. It's a nightmare! I don't know what to do. I know the outcomes are a little better with AIs and the Tamoxifen gave me terrible thrush like itching which in the end covered my stomach too. I'm normally such a glass half full person but this is beating me. Has anyone any ideas as to how best to manage the side effects?

[Matty2]

Thank you eastanglian

I have just found and read that link from Cancer Research that you posted. I found it very useful and it explained just what I needed to know,

I have been taking Anastrozole since December, recently a repeat prescription was for a different brand which I have found much better as far as side effects go

beryl

[ValS1]

Thats good to hear, all the best 🙂

[poemsgalore]

Been on it 2 years now, can't believe I worried abou it. I have no problems. xx

[ValS1]

Hi, not too long, I had the lumpectomy on 12th Jan, had the Rad planning appt last Wed and just got the letter with the dates for the sessions starting 1st wk in March.

[Atat]

Hi East Anglian. How long have you had to wait for radiotherapy?
Atat

[ValS1]

Yes, I couldn't have Tamoxifen as the possible side effects don't suit my health history of stroke so they put me on anastrozole, I have only just started taking it so early days but I will persevere with it and follow the advice of my medical team and hope as we all do that I remain in remission. All the best.

[Atat]

Hi. Yes, possibly more than Tamoxifen. I'll certainly be persevering with it despite the arthralgia etc. the hot flushes have now ceased.
Best wishes

Atat

[ValS1]

Hi Atat, I have read on the Cancer Research website: http://scienceblog.cancerresearchuk.org/2013/12/12/a-new-way-to-prevent-breast-cancer-anastrozole/ - that Anastrazole is very effective at preventing recurrence, which I find reassuring. All best wishes.

[Atat]

I'll be taking Anastrozole for 10 years
Atat

[ValS1]

Hi, welcome to the forum. I am thankful that my tumour was found early after a routine mammogram, I also had a lumpectomy and lymph node sample taken & mine had not spread, so my treatment is Anastrozole for 5 yrs and 15 sessions of radiotherapy which will start soon. A nurse told me that 30 yrs ago it was mastectomy as standard and they did not do lumoectomy, also there was not the screening we have today so many women came too late. Best wishes xxx

[dee0462]

Hello Everyone.  I am new to this forum.  I have been on Arimidex and Zoladex for over a year.  I have had no side effects except for joint pain.  I have been extremely happy with my care from my oncologist at the cancer treatment centers of america in Chicago.  I am on 1mg arimidex and injection of zoladex every 3 months.  I had 25 sessions of radiation over a year ago when this all began, and continued working.  Dont let these side effects get you down.  Its a way of telling us that we are still alive!  I would rather put up with these side effects considering the alternatives.  We can ALL do this.....God has this!

[Matty2]

I saw my consultant yesterday - long bone ache part of the course and when I moaned about my hair thinning already he said that was to be expected as well.

I started Anastrozole in November. the hot fushes are do-able but leg ache grr!

I am concerned that I have been told no rads or chemo. 2 x 22mm lumps of invasive lobular removed along with my breast.

Path. shows everything is clear now though. Tomorrow I have the bone density scan (delayed as I was unwell)

B

[ValS1]

Hi, thanks for posting, I had seen other messages on the forum about hair thinning which must be distressing, wishing you all the best.
Best wishes

[CassieB]

I'm now almost a year in from having a Wide Local Excision & Sentinel Lymph Node removed. Results came back that lump was grade 2 and about 7 mm big and everything was removed and nothing in the lymph node. This was followed by the usual 15 days of radiotherapy. I too was prescribed Anastrozole for 5 years (4 more years to go).

I consider myself to be very fortunate in that I'm not aware of any additional aches and pains to the ones already experienced with arthritis (I am nearly 70). However, I am concerned that my already slightly thinning fine hair has continued to thin to such an extent that there's almost a bald patch at my hairline and on top. I cope by wearing my hair in a 'comb-over' style which is becoming more and more difficult to achieve simply because of the lack of hair.

I've read that other people have experienced hair thining on anastrozole but haven't seen whether anyone has found a solution. I am seriously considering getting a wig but would rather not as I've never been comfortable wearing a hat so am not sure that I'll be able to cope with one.

I know this is a minor problem compared with what other people have gone through and are still experiencing but it does worry me. I will be having my 12 month follow-up appointment with the Onc in March so will talk to him but, quite honestly, I find that men don't really appreciate how much her appearance affects a woman's confidence.

[ValS1]

Hi, yes I feel the same, will persevere. X

[daiseykins]

Hi eastanglian,l am now going into my third month with letrozole.the side affects are starting to kick in,slight joint pain,very low mood,but my worst affect is extreme tiredness.before bc I could walk for miles but now I have to do has my body tells me.l am 60 but some days l feel 80,but on the other hand so grateful l am here to tell the tale.if this little tablet helps keep this horrible disease under control it's a price we will have to pay.hope all goes well with your treatment😀 x

[ValS1]

Hi, I'm new on the .forum. I had a lumpectomy 3 weeks ago & got post-op results this week, Stage 1 breast cancer, 10 mm Type 2 tumour (intermediate) lymph nodes clear, I was prescribed Anastrozole for 5 years plus radiotherapy. I am 4 tablets in and immediately noticed my mood really low. I coped OK through the diagnosis and op although all traumatic, also have to have another operation when radiotherapy is done as they found a benign lump on my chest when I had the MRI scan, which has to come out apparently as could change over time if left there. Its nothing to do with the breast cancer, apparently this happens when people get screened as it shows up other things as well, so I had a double-whammy! Anyway I realise its early days with the Anastrozole so will be patient, I feel rough mentally right now though but it could also be a reaction to all I've been through since November right across Christmas & New Year attending various clinics and waiting for results. Ending on a positive, I have found Meditation hugely helpful and have got various free Apps on my iPad, one of the best is Headspace, their website is well worth checking out. Xxx

[Atat]

I've been told that I'll be on Anastrozole for 10 years, so 5 seems quite short to me. I had hot flushes, now improved. Tenosynovitis of my thumb, very painful, hoping to get a temporary splint. Have told told side effects will reduce after 2 years. Small price to pay, I feel, if it keeps me Cancer free.

[Matty2]

Hi again

Also my skin is so, so dry especially my face and hands. My scalp is very itchy as well,

Also seem to be constantly putting lip balm on my lips.

Yep - I think side effects are kicking on. Did think last night can't go on like this for 5 years!!

But I am also lucky as not neede chemo or rads, just the mastectomy

beryl

[Matty2]

Hi

I've been on anastrozole since Novemebr. Hot flushes seem to have settled down, they were all over the place after my mastex but the last few days not too bad, and settled down, still could fill a swimming pool sometimes.

My problem at the moment, getting worse last few days is bone pain, It's not my joints (I have slight arthritis any way) it's the 'long' bones in my arms and legs - they really ache/are uncomfortable. Especially notice it when I go to bed and rest and find it difficult to settle and get comfy.

I will have the bone scan next week, first one was cancelled as I caiught Norovirus!

Already take Vit D (fish oil) but am wondering if I need more

Also I see there are food suffs to avoid - ant ideas?

beryl

[Magical_Moon]

Hi Bondgirl,
Lovely to hear you had a better night. You have done incredibly well if this is your first wobble after all the treatment you have had to undergo. You are a very strong lady!!!
Positivity. Yes, it really does help to maintain your inner strength when things get tough.
Sending you lots of warm wishes and good luck in the hope that your s/e's will be minimal and manageable.
Peace and Positivity,
M x

[Bondgirl]

Thanks Magical Moon, I have been so strong and positive throughout the treatment and this was my first wobble, had a better night last night so think I might have been worrying myself too much to sleep! I am going to continue till I see my oncologist mid January to give it the time to settle like you say. I took the advice of others before starting it by stopping caffeine, very rare glass of wine now and keep the curry to a minimum. Thinking about having some Reiki to balance me out with an Indian head massage and reflexology - heaven as I haven't had any since treatment began. Day 8 seems to be a better day too thanks for your support.

[Magical_Moon]

Hello Bondgirl,
Your treatment plan has been more extensive than mine as I only had rads. I am sorry you had to go through chemo and rads.
I know there are ladies who do not have many s/e's when taking hormone therapy but a lot of ladies do have a difficult time. It is so individual and you only find out whether you are one of the lucky ones to escape s/e's when you take the medication.
For me, taking hormone therapy has been very difficult.
Both Tamoxifen and Anastrozole gave me s/e's straight away. So you are not alone feeling aches and pains after two days medication.
If you can try and take Anastrozole a little longer you may find your body adapts to it. However, if your symptoms get worse your BCN will be able to arrange for your oncologist to review your medication and possibly switch you to an alternative AI (Letrozole or Exemestane).
To be truthful, Anastrozole caused me severe joint pain and months of sleepless nights before my GP eventually prescribed me the correct medication to control my pain. After being deprived of proper sleep for eight months I was so relieved to finally get a good night's sleep. Tamoxifen used to wake me up every two hours with night sweats.
You are only at the start of taking Anastrozole and hopefully your initial symptoms may ease. If they don't, I am sure your oncologist or GP will help you.
At one point, I wanted to stop taking Anastrozole but now I have the right medication to control my joint pain, it does not bother me as much to continue taking Anastrozole for four more years.
Plus, I am not brave enough to stop my hormone therapy because my BC was rare and very aggressive.
I hope you find a solution because sleepless nights are dreadful.
Peace and Positivity,
M x

[June_BCC]

Hi Bondgirl

Maybe you could call our free helpline and talk through your concerns with one of the staff who are there to support you.  The number is 0808 800 6000 and lines open 9-5 weekdays and 10-2 Saturday.

We also have a service whereby you can talk to a volunteer by phone or email who has been through a similar situation as yourself, this is called 'Someone Like Me' , here is a link to the sevice if you would like more details. http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support.

With best wishes

June, moderator

[Bondgirl]

Hi everyone, I was diagnosed March this year with grade 2 lobular and ductal ER positive and had Wle and sentinel nodes removed, 6 months chemo, another WLE and full node removal which gave clear margins, then 4 weeks rads this all finished 2 weeks ago and last week I started on what seems to be the dreaded Anastrozole. Do the side effects start straight away because 2 days in I started to ache but also can't sleep. The sleeplessness feels like the same as when on the chemo. I was reluctant to start this hormone therapy due to the side effects and I was an absolute mess with lack of sleep during chemo and am so worried this is my side effect as I don't think I will be able to cope without sleep. Do they settle down or is this it for the five years - seriously thinking about not taking the meds

[Magical_Moon]

Hello Monica,

Hormone therapy........don't you just love what it does to your body and sanity!!!

I started off on Tamoxifen but had to come off it after just over three months because of the horrendous side effects. My Oncologist switched me to Anastrozole which I have been taking for 9 months now. Anastrozole gave me a different bunch of s/e's. The worst was severe, constant pain in every single joint except my toes. The continual joint pain wore me out along with the sleepless nights.

After four months of struggling with the pain, (I'm allergic to anti-inflamms, Codeine, Tramadol etc), my GP prescribed me Amitriptyline for neuropathic pain. It has given me some relief the past five months but the pain has not completely gone. It is manageable to a degree.

However, at night when I am lying in bed, I notice that my heart beats irregularly sometimes and at other times it races twice as fast as my normal heartbeat. I don't know whether it is the Anastrozole or Amitriptyline that has caused this or the combination of the two medicines.

It's one year since my BC diagnosis and all this medication has been a shock to my body. Sometimes I think I've become too aware of my body and nowadays notice any slight changes.

Good luck Monica. I hope you find out what is causing your problem.

Peace and Positivity,
M

[MonicaS]

Hi ladies, long time since you posted but I've only just got the problem, so hope you're still looking here.  I've been on Anastrazole for 3 years, horrendous muscle pains, anxiety, memory etc.but a new one is slow and irregular heart beats.  Had an ECG at the GPs, then a trip to the cardio, did a treadmill test and now he wants me to do an echocardiogram and an angiogram.  Don't mind the echo but the angio means putting something up from your leg into your heart. Yeah right!  That sounds like a great idea.  He also put me on a low dose  beta blocker which slows the heart down, which considering my rate was about 40-50 seemed a bit wierd. 

I don't have any symptoms, I've never had any heart issues, always been slim and fit, regularly cycle 30+ miles.  Only just found things on the net mentioning irregular/slow heart rate with Anastrazole becuase I didn't notice it until recently.  Doesn't say anything about that on the box...I've changed to Tamoxifen to try and reduce some of the other side effects, so far no change.  Oh joy.

Anyone else having this?

Monica

[Magical_Moon]

Hello Michele,
D3 is Vitamin D3 (cholecalciferol).
M x
PS. I'm sure your hair looks better than Ken Dodd's........even on a bad hair day!!!

[Seashell60]

Hello Rafu, congrats reaching the 5 year end!  Not meaning to sound thick but what is D3? I still have awful pain in my left shoulder/elbow which wakes me up sometimes. i was given Movelat cream by my GP which doesn't do a lot! the funniest suggestion came from my surgeon at my 1 year check-up when he asked if i go to the gym? Ha! As if! Some days i can hardly hobble downstairs until everything relaxes and i don't look like a shuffling babboon!!! lol  I have on the whole been quite free of any major side effects (apart from the heart hiccups which are being checked next week). When you say about your hair, i have noticed that with my new head of hair (which is short and slightly wavy now after being straight forever!) is ever so dry and flat. Is this what the hormone does over time? I use baby shampoo and a conditioner and i have to wet the hair every day to prevent looking like Ken Dodd on a bad day!!!! I also need to lose some weight - whatever i lost during the chemo last summer has bounced right back on and then some!!! Happy Days , Michele 🙂

[Magical_Moon]

Hello Rafu,
Congratulations on completing your 5 years medication.
I'm just at the beginning of hormone treatment.
Hope you don't mind me asking. What happened to your hair?
Peace and Positivity,
M x

[Rafu]

Hi, I just took my final arimidex pill today after 5 Years. I found that the supplement that has helped me the most is D3. For the last 4years, I have been taking 15,000 iu's a day and it has totally erased the pain in the joints of my hands and ankles. I do still have pain in my back however. I do not take Calcium, but I do have a Reclast IV injection once a year to prevent bone loss. I hope now that I have stopped the arimidex, maybe my hair will improve and I can lose some weight.

[Seashell60]

Hi I am new to this site and also was given Anastrozole, after having 2 ops for Stage 2 breast cancer followed by 6 months chemo and 3 weeks of radiotherapy. But after starting Anastrozole in September 2013 I began having very worrying irregular heartbeats/palpitations etc. I had also been taking Vit D and calcium supplements prescribed after a Dexa scan (which showed borderline possibility of thinning bones but i have stopped taking these now and eat sensibly). After many visits to my GP, heart traces, etc I ended up in A&E and kept in overnight for monitoring and an echocardiogram which was okay. I believe that the combination of starting a new hormone tablet (Anastrozole) coupled with already taking Thyroxine tablets they reacted in some way which was agreed with a consultant and one of my GP's also. Funnily enough my Chemo consultant didn't seem to share this idea, but then again she seems to rather take a lot of her info from printouts full of statistics and percentages and not individual patient studies! I think th at as long as you know your own body and the way it works you can sense what is right and what is wrong for you. So now i also have to take Bisoprolol (beta blocker) to help regulate my heart for the next year then possibly for the duration of taking the Anastrozole for 5 years. Not my ideal choice to be taking pills but if it helps i will. I now have to attend my local Walk-in centre in 3 weeks to have a 24 hour heart monitor fitted so they can observe exactly what my heart does all day and night! I can tell them exactly what it does and it is driving me insane! If it turns out to be hormone related then hopefully that can be treated (probably with more pills!). In the meantime I have been told i am not fit for work at present (and for the foreseeable future) so i am trying to do what i can ( i am a young 53 soon to be 54) ! and all i want is to be back to *normal* again!!! x

[Barbarella63]

Lots of green vegetables have high levels of calcium too, I juice them.

[poemsgalore]

Hi Maryland,

If you are not happy about using cow's milk for calcium, there are many other kinds of milk available, all good sources of calcium. Goats milk, soya milk, and variou nut milks (unless you have a nut allergy). You can also buy rice milk too, they are mostly available from your local supermarket. It might be worth giving them a try.

Poemsgalore 

[Guest user]

Hello Ginette,
I was diagnosed with breast cancer a year ago and had a lumpectomy last September, followed by radiation in November last year. I was then told to take Anastrozole for 5 years, well like you I didn't feel comfortable with the decision and declined medication, as they told me when they removed the lump my margins were clear and the two lymph nodes they removed were also clear.
I did feel that the side effects would outweigh the benifits, I wasn't looking forward to having stiff joints as I already have a little arthritis. I hope I have made the right desision, I eat healthy, try and buy organic food when I can and exercise. I have another mamogram scheduled for a couple of weeks time and I must say I am terrified they may find another lump, but I still feel I made the right choice by declining medication.
all the best Mo

[Katykookabura]

Hi Pat and Maryland, good points frm both of you. I bought a good all round vitamin and mineral supplement today which will give me a boost I think. Trouble is whilst having a balanced healthy diet is the best and I try I am cutting out dairy as trying to cut fats out to lose weight. It is about being sensible I realise and will try and do that. Feeling a bit 'run down' at moment as having Chest problem from rad treatment. Have real craving for fruit so that is good for me at least!. Best wishes Katy.

[Maryland]

Hi Trisha_51...I have also read around lots of research surrounding supplements, including the latest proclaiming that all supplements are bad for our health! Having been fit and healthy pre-diagnosis and never taken a supplement in my life, was a little wary about what Onc was proposing given my DEXA scan was excellent. After surgery, chemo and rads I felt my body had taken sufficient 'alien' battering and I wanted to get back to 'normal'. She explained that Anastrozole has shown to impact negatively on bone health and I should strive to eat a calcium rich diet and only supplement if it is lacking. However, the most calcium rich foods are dairy, which can cause high cholesterol which may have its own health problems. I was advised to try to achieve 50-75% from food and take up to 50% just 5 days a week from supplements. Vitamin D3 is also important for calcium absorption, and given our UK climate it was important to supplement with this especially in the winter.
It is hard to work out how 'healthy' our diets are without becoming obsessed about every mouthful......
As you say, each of our diagnoses is unique to us, and we can only be guided by having trust in the expertise of the professionals who care for us.....as mine said she didn't want to see me again (in the nicest possible way!!!).

[Trisha_51]

Hi everyone, please be careful with calcium supplements. There have been a variety of studies from different countries including Sweden and USA which suggest that supplementing a calcium rich diet with calcium supplements can lead to cardiac problems. On a recent BCC Moving Forward course the medical herbalist who came to talk to us about diet and nutrition advised us to try and get vitamins and minerals from food rather than supplements If at all possible. I don't want to frighten or influence anyone, just to make you aware that there are concerns in this area. It's often difficult to weigh up the potential advantages/disadvantages of drug combinations and our particular diagnosis can make this even harder. Sorry if I've upset or worried anyone, best wishes to you all Pat x

[Katykookabura]

Hi Vi, interesting that you were put on Calcium and Vit D. Will add that to my pill list! Thanks Katy.

[Vi1]

IHi
I was automatically put on Calcium & vit D supplement with Arimadex, I was told by my oncologist should continue this all the time i'm taking the arimadex.

[Vi1]

I had surgery and reconstruction at the same time followed by 15 sessions of radiotherapy.
I've been taking arimadex for the past 3 years. had ups and downs with it. Mainly troubled with terrible aching joints and itching.
Gained loads of weight and recently had abnormal Liver function.
I have now started with a personal trainer and feeling the benefits, much fitter , losing weight, the joints not as achy probably from the weight loss, still get the itching. My Gp gave me antihistamines to help.
Still got another 2 years to take the medication, and new reaserch suggests should then have tamaoxifen for another 5 years.
The side effects are a small price to pay to ensure no recurrance of the cancer.

[Katykookabura]

Hi Blackswan, I have been on it since Febraury and at first it was headaches, that was just a couple of weeks after starting, but they only lasted a couple of weeks . The aces and pains everyone refers to depends I think on your age and if you are prone to arthritis or rheumatics. .
i already had these, so did not really notice any real difference until about three weeks ago. Definitely more stiff and slower first thing but this goes once I get moving. Just allow myself longer and more time first thing.
The surgeon who did my op said it would make my aches and pains worse and she was right but it is manageble so far . I take a couple of paracetamol if bad which is not that often. I have been on some anti inflammatory drug but decided yesterday I am going to try without it as do not want to take that for five years as well!. Will see how I go. Started on glucosamine as others have suggested on this site and stronger dose of cod liver oil tabs.
Think how it will affect you depends on your general fitness.
Told my GP last week I was getting more aches and pains. She said she can change it to Tamoxifen if it gets unbearable but I told her the oncologist said Anastrozole is better drug , especially for my type of cancer, so will stick with it if I can. Five years, well in fact that will soon be 4 and half years at the end of August!. Take care, Katy.

[Trisha_51]

Hi Carrie 35' I've been on Anastrozole since Jan and wasn't automatically prescribed calcium tabs. I had a DEXA scan not long after I started the hormone therapy which came back as 'within the normal parameters' so was told I didn't need any additional medication.

[carrie35]

Hi Maryland for info I take Tamoxifen and I told my onc I had low vit D and I buy my own calcium and she prescribed it for me. I get the opinion that this is automatically prescribed for anyone one on the other drugs which are harder on the bones. I am post menopausal and probably was when I started taking tamoxifen but my onc said she would let me take it for two years. I recently asked her if she wanted to take me off it as I wasn't keen on doing a different drug ( not keen on this one either but reluctantly agreed to try it) anyway she now says she would prefer to leave me on tamoxifen for ten years based on recent research etc.... Not really keen on that but the point I make is that if you are not happy on these different drugs you could go back and ask about going back to tamoxifen even if you are post menopause.

[poemsgalore]

Blackswan,
They can't give them to me until they get the letter from my onco. It was she who sent me for the DEXA scan, not my GP. Lemon flavour - oooooh, I hope I get those.