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.

Iv now finished chemotherapy and rads and so will be starting these wee things next week.....it will be good to compare notes.....x

Hi I have been taking anastrozole for the past 6 weeks and suffer from aching muscles and joints in my legs and also aches in my hands and fingers.   I regularly exercise taking the dog out twice a day.  I find my symptoms are worse in the morning therefore I take ibuprofen which seems to take the edge off.   I'll continue taking it if my symptoms don't get any worse.   My first Dexa scan was fine so let's hope it stays that way.   Let me know how your getting on with it. 

Hi, I've been on it almost a month now, and seem to be the same as you...defo worse in the mornings....I'm relieved that my moods aren't changing as I've read this too can happen? I'll stick it out as I'm too scared to try something else in case side effects are worse....better the devil you know I suppose! Xx

Hi no I haven't suffered at all with mood changes although if I haven't slept particularly  well which isn't unusual again could be the anastrozole i find myself quite lethargic and even nodding off in the afternoon .  I try to keep busy and this usually takes my mind off things also struggling to keep my weight down how about you?

Hi Jo3000 and Marlyn,

The aching muscles and sore joints are usually short lived and go away after a few months.  It's definitely worth persevering with.  xx

Hi there

just found the thread about anastrozole, and thought I would just join in and see what others have found.

I was prescribed the drug in June after my mastectomy with no further treatment as I’d had radiotherapy in the same breast with a previous lumpectomy.

Spoke to the surgeon and asked what the benefit of taking the drug versus not taking it, she used her ready reckoner and it was a predicted 1%.

I decided to try it and if the side effects were in any way bad I would come off and take my chances,I’m fit and have no other health issues,so in a good place.

On day 5,and early days but nothing as yet maybe more sweating but the weather has been warm.Will see how the month progresses.

I have heard that different brands can sometimes make a difference so I’ll be monitoring that too.

X

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 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.