Hello siuin,

I'm sorry to hear about your situation.

I can appreciate why you are worried about the effects Anastrozole might have on your bones but before stopping any prescribed medication perhaps it is a good idea to speak with your medical team, as they would be able to help make a more informed decision. So if you don't have an appointment with them already I think it's a good idea to book one in order to discuss your concerns. 

Also, if you feel like speaking to someone else medically trained might help, feel free to give our cancer nurses a call on this number 0808 800 4040, Monday - Friday, between 9 a.m - 5 p.m.

Best wishes,

Renata, Cancer Chat Moderator

Thank you for your reply.

I really don't feel that my Oncologist takes osteoporosis seriously.

I got his assistant who is also a doctor. She told me that they brought me in early, but not over anything too important, just that the results of my Dexa scan had shown that my bones had worsened and they were just going to give me an injection of Prolia every six months. But because I was expecting this I had my questions read.
1. What are the side effects of Prolia.? People tolerate it quite well.
2. What was my T score in Feb 2017 ?-1.8
3. What was my T Score in Feb 2018? -2.6
4. Will the Prolia improve my score? No just stabilise it.
5. If I stops taking Arimidex will the Prolia improve my score? It might.
6. If I stop taking Arimidex what is the likelihood my cancer will return? It is hard to be accurate but probably 7to 10% chance of recurrence.
7. If I keep taking Arimidex, what is the likelihood of recurrence? About 5-7%
I think I want to come off Arimidex. But you will increase your risk.
But it has given me osteoporosis. Also it is ruining my teeth.

She fetches the head Oncologist.
I tell him that in the last year I have lost the first tooth ever in my adult life, I have to get a root canal redone and the dentist has told me that I will need a bone implant to save another tooth. I tell him that while I have done everything by the book and even tried a drug trial, I have a horror of getting osteoporosis and that at the rate I'm losing bone density, be the end of this course I will be damaged beyond repair.
She suggests Tamoxifen. He says it will drive my fibroid mad, it was huge. I say. take it out, its smaller now.
The new plan.
immediate visit to a gynecologist with a view to having another operation, this time to remove the fibroid. Get the teeth done. Stay on the Arimidex until June and keep taking the calcium. Then in june, switch to Tamoxifen and while it does damage the bones, it is not as hard on them.

I go home and think about it. My plan. NEVER EVER take Amridex again. Fix my teeth, get the fibroid out. Maybe give Tamoxifen a go. Get a dexa scan every 3 months. If I lose bone density, give up Tamoxifen too and take my chances. The 2/3 % risk differential is not worth the osteoporosis. I have been on Arimidex for 14 months, I took 5 rounds of Palbocciclib and I had complete pathological response after just 3 of my 5 rounds of chemo. That must make my chances of recurrence even lower.

I can only work with the information that I have been given. If there is another angle that would help me make the right decision I will gladly listen, I'm so worried about this it keps me up at nights.

Hi pug,

i started on anastrozole July 4th this year....so far so good, I take it at night....I must admit I was expecting all manner of horrible things to happen to me....fingers crossed eh? X

Hi 

Have you taken the same brand since you started ?

Hopefully we are the “lucky “ones...

I am the same keep expecting the effects to kick in mind you I’m early days they may start soon??

I take mine first thing in the morning.

x

Yes, I'm on the same brand... TEVA.... I was told by a Facebook group this was the best....but how anyone would know that is beyond me! 

The only thing I have noticed in the last couple of weeks is a "glum" feeling, but I can't pin that on anastrozole....it's most likely to be everything Iv been through this year...it all adds up doesn't it? You can't expect to get off Scott free....

keep me posted....xxx

Hi there Penelope1, how did you get hold of the powder shake and capsule please?  Was it prescribed, recommended? or did you order from a Company? What were the brand names? I am finding after a year of taking anastrozole that my my joints are stiff and painful. I have osteopenia and i am going to have calcium injections, but i have to wait for a number of months as i had tooth extractions. Do hope you continue to feel well.

Hi Sithney. I took Anastrozole for 2 years, when I couldn’t even walk a block,I found this blog.  Realized it wasn’t arthritis, tried Tomoxifen, even worse.  Oncologist eventually got me back on Anastrozole, took 3 more months and began taking regenifree by Univera, available only in US and Canada.  Just had 5 year check up, cancer free, will go back in a year to doctor.  I drink aloe and stay in love.  Never advise people to quit meds, I finally just wanted to feel energized and well.

penelope1

What nutrional capsules are you taking and can I get these in England??

Hi there, 

I'm so so glad to have found this link , I’ve been taking “ Anastrozle” for a month now and I feel dreadful.

This year I’ve had a double mastectomy, different types of cancer in both breasts , done chemo , had sentinel lymph removal and now waiting for radiotherapy next week , and I haven’t broken down at all, even when my precious sister was diagnosed with breast cancer too. 

However, these pills are making me feel like hell. Every day is just a little worse and I thought I was going mad or not coping but knowing others have same reactions helps enormously- Thankyou.

My question is , how do I  ( or even should I ) get a Dexa scan? And how does my oncologist monitor my oestrogen levels. In our last meeting I asked him how we progress once radiotherapy finishes and he said we just monitor it? Frankly I don’t feel that’s good enough but like others here I’m prepared to believe they are the experts.

But at some point I have to take control, and I can not live with these pills for the next 10 years, I could hardly hold the kettle this morning after waking up at 4am as I can’t sleep. I have a lower back pain for a month now which is really debilitating and just can’t find any energy for anything, not even turning on the tv let alone yoga and exercise which I normally love.

I’m in tears as I write this as the relief of knowing these are common side effects is huge , but is it really worth it? 

X 

Hi Fubs, 

I just read your post and really feel for you. I had 2 mastectomies and was told I should be on anastrozole for 10 years. There’s no right answer - I lasted 11 months before I completely broke down and stopped. The anxiety was crippling, along with lack of sleep, soreness and tiredness. I checked with my consultant what the added risks to my cancer recurring - which was 1% - there was a much greater risk of getting osteoporosis for which I had initially been told I would have a DEXA scan. I was later told I would not. I later experienced stress fractures on my ribs and did get a DEXA scan showing osteopenia  

I would advise to make sure you are looked after - it doesn’t seem to happen automatically. I gradually felt better after stopping anastrozole and have no cancer recurrence. I stopped drinking cut out other things that increase cancer risks - I would rather have quality of life over what I had when taking anastrozole but that’s a personal choice - it is a highly effective medication in preventing cancer. It is just a shame that for some people it has such bad side effects . There is a very interesting research article you can look at done by the Australian NHS into how effective anastrozole is at preventing cancer versus the long term side effects. It helps to have as much information as possible before making a decision. 

Best wishes 

Dear Kiwiwife, 

Thankyou for your reply, I found it most helpful and I’ve requested an appointment with my oncologist ASAP.

As you say , sometimes the flow of information is limited. My oncologist, for example, didn’t/ wouldn’t confirm my radiotherapy in case it was “too much for me to deal with” as I’d been very “brave” until after my sentinel node removal. To say that I felt I was being condescended to would be a little understatement and sure enough, when asked again, he confirmed my radiotherapy program and I felt I could prepare myself adequately. 

I read that the benefits for a few are quite negligible versus side effects so I will keep investigating and make an informed decision when I next see him, but it’s so good to know I’m not falling apart.

Thankyou for your advice.

kind regards

P.s. couldn’t agree more about giving up alcohol and exercise, not my natural lifestyle choice but it does really help .

Hi Flubs,

wishing you the best with your oncologist, I hope he/she is sympathetic and helpful. I am now 3 years down the line from my cancer diagnosis and am physically good apart from surgery related problems and bad menopausal symptoms which have been much alleviated by not taking the anastrozole. Exercise and good lifestyle definitely help, more support and being better informed would be really helpful but I guess the NHS is very stretched and though I find the system very lacking in this respect, from my experience, I cannot blame the staff as they have all been very kind and I think have done as best as they are able.

You are definitely not falling apart. Hope you have a good new year.

Best wishes 

Hi Flubs,

wishing you the best with your oncologist, I hope he/she is sympathetic and helpful. I am now 3 years down the line from my cancer diagnosis and am physically good apart from surgery related problems and bad menopausal symptoms which have been much alleviated by not taking the anastrozole. Exercise and good lifestyle definitely help, more support and being better informed would be really helpful but I guess the NHS is very stretched and though I find the system very lacking in this respect, from my experience, I cannot blame the staff as they have all been very kind and I think have done as best as they are able.

You are definitely not falling apart. Hope you have a good new year.

Best wishes 

Hi you said you are not taking the Anastrozole? When did you stop talking them and why?

 I have stopped after 6 months. I found that 

I had pain in my hips arm hand.Went to oncologist. They said to come off Anastrozole. The small difference they would make,against the side effects.

would appreciate any more people who have had the same problem, to answer this please. I feel like I am going mad