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.

Wow Penelope, 73 and a great attitude to life!

Good luck for your future surgery.

wishing you all the best from across the pond. X

Thank you Stephi and the same to you!!!!

Hope all goes well for you.

Life is for living there's no doubt about that.

You're brave having the reconstruction,  I had the mastectomy as I had the lumpectomy in 1991 and had it was the same breast so had to go.The thought of the reconstruction filled me with dread.

All went well with op but still I guess getting my head round having one boob 

x

Pug07

yes, it is brave to reconstruct, but practically free in America per a law.  I'm just in a very strong place and I have daughters.  They've seen me happy with one breast, they were both there for my mastectomy, now they'll get to see the repair process....

Oh it's free here on NHS,but I didn't fancy the skin removal and recovery, although I am slim and very fit so recovery would have been good.Maybe in the future I may change my mind...

I'm sure you will look great and have lots of fun x

Pug07

yes!  I've waited 5 years, no rush if ever!!!!

Please can you name the capsules for the joint pain you have taken....thanks.

Sorry but your post is to the wrong person, I asked about the capsules and never got a reply. I can give a little further info on the pain though. On the advice of my palliative care doctor I stopped the anastrozole for a time to see if it made any difference. To my surprise it did not reduce the pain at all. So either the damage was done or it wasn't the anastrozole that was causing it in the first place. I would also say to think very carefully before stopping any medication that may reduce the risk of a reoccurrence. I now have secondary cancer in my bones and received a terminal diagnosis.

Hi All

I wish you all well along your journey. I am about to start anastrozole but want to know whether there is any meds that might 'trick' the body into belieiving that the estrogen has not been blocked. Oestrogen can help us maintain good health and without it - I dread to think..An endocrinologist might advise..Also the hair thinning sounds exceptionally worrying - does anyone use a particular shampoo/hair dye..

What a brutal drug!

Take care all

Hi Acelynn,

I'm not sure about any meds tricking the body regarding oestrogen but my hair is no thinner 13 years later on Anastrozole and I'm 58 now.  I do use Plantur 39 shampoo and the hair tonic inbetween shampoo days.  The conditioner doesn't contain any of the active ingredients so I use a different one.

My hair was dead straight before chemo and it's been curly ever since and I love it!

Stick with the drug as it does improve after a few months, that's if you do feel a bit stiff at first that is, I didn't.

Hi Acelynn,

I'm not sure about any meds tricking the body regarding oestrogen but my hair is no thinner 13 years later on Anastrozole and I'm 58 now.  I do use Plantur 39 shampoo and the hair tonic inbetween shampoo days.  The conditioner doesn't contain any of the active ingredients so I use a different one.

My hair was dead straight before chemo and it's been curly ever since and I love it!

Stick with the drug as it does improve after a few months, that's if you do feel a bit stiff at first that is, I didn't.