Arimidex question

LJC

I will be reaching my 5 year mark taking Arimidex in February.  I've asked my onc "what happens then??"  The studies on Arimidex only go for that 5 yr period and she's mentioned that I could continue taking Arimidex.  I'm just wondering what those of you who are also approaching your 5 yr mark will be doing.  I have an appt. with her in January and we will discuss further this option of continuing on Arimidex, just wanted to get some feedback from others in the same situation.

Thanks and

Isabella4

Hi Lois.

I am just about at my 5 years of Arimidex. My onc and I had the conversation you are coming up for, and we decided that, as I was ER+, and with vascular invasion that I will continue 'for the forseeable future' on Arimidex. She was just about to give me the 'I think your time is up on Arimidex' speech when I put forward my argument, of ER+ and vascular invasion....she said 'I can see what your thinking is' and agreed to let me stay with Arimidex.

I have a bad time with it, 2 carpal tunnels, 2 plantar fasiitis, now bones thinning, and lots of general bone and muscular pain. I still don't know if I have done right, but the 'vascular invasion' and the 'highly ER+' on  my path. report scare the Hell out of me !! I learn to live differently, and I moan buckets.

Isabella

gsg

Hi, Lois:  I'm nowhere near the 5-year mark yet...just coming up on 2 years...but I have thought about it and I plan to ask to continue on Arimidex past 5 years, as long as my bone scans remain good.  I haven't had any side effects from Arimidex.  The thought of going off it, scares me.  Good luck to you as you make your decision.

LuAnnH

for those of you on arimidex with bone thinning I would consider the new drug called reclast.  It is the same drug as zometa, just a different dosage than us stage IV girls get.  It is an amazing drig and helping to strengten the bones and turn around bone loss.  When I was started on it, they also told me that it makes the bones an inhospitable environment for the bones for mets to grow.  It does have a few risks, the biggest is ONJ.  On a lesser dosage that would be taken for menopause I would think it would be very minimal.  It is not that big in stage IV ladies so as preventitive I would bet it's even less.  You do get flu like symptoms for a couple of days after infusion but you only get it once a year.  Just my opinion, but if I wasn't stage IV and had bone thinning I would consider it.

chj127

Wait - Isabella, did you say plantar fascitis?  I've just been on Arimidex for a few months, and my plantar fascitis just flared up after 14 years of no problems.  I never put those 2 things together.  Is there a link?  Can anything be done about it?

Thanks,

CHJ

Isabella4

CHJ,

Oh yes, BIG link, Astra Zeneca admitted the carpal tunnel, sometime last year I think it was, and have now put it on the packet insert.

I wear night splints, helps minimalise pain, but some of us have Cortisone injections, some go for the carpal tunnel release surgery ( my surgeon  suggested this to me only yesterday, says he can do it it 9 minutes flat !!)

My GP denied there was a link for 2 years, then I got into difficulties with plantar faciitis, and saw  a stand in for her, who said the plantar faciitis was also caused by Arimidex.  I have forgotten exactly how he put it, but I think it was because of Arimidex blocking oestrogen, that in turn made the wide band of tissue, the fascia, that runs from the heel to the toes, to contract, become less supple (because of no oestrogen) and cause all the pain that it does. This stand in GP also told me there WAS a definite link with carpal tunnel.

Shows we have to put our own 2 and 2 together, some doctors can be so dismissive.

Good Luck.

Isabella.

chj127

Isabella,

Thanks for the info.  That was the first I'd heard that specifically.  It makes sense for me, though, given the timing of when I started Arimidex and when my pain started (about 2 months later).  I'll have to investigate.  I saw the podiatrist last week, and she was checking on what was covered by my insurance.  I've worn orthodics for 14 years, which is why it seems so strange that it all of a sudden started to flare up.  I'm going to definitely get the night splint.

Is there no end to the surprises???  

CHJ

ps123

My onc is going to keep me on Arimidex.  Evidently there are some ongoing studies that are showing, especially for women with larger tumors, staying on arimidex beyond the 5 years can be beneficial.  Since I was stage 3, I fall into that category.

Pat