Hi havent posted for a while tho I do still read posts from time to time. I have just reached my 5 year anniversary since diagnosis. I have had Grade 3 invasive, ER+, 4 out of 12 lymph nodes affected. Long chemo and radiotherapy then Tamoxifen for 1 year and switched to Arimidex for next four as now post-menopausal. On the positive side, I am very happy to have reached this milestone, in particular because I was told I had a 50% chance of living for 5 years. Sadly I have lost many friends along the way…
I have been told that I must stop taking Arimidex in January, that the downside of the tablets outweighs its benefit after this time. I believe that the jury is still out as there are not many women around who have been taking Arimidex for the 5 year period and I dont think they know the answer as to whether it is of value to continue to take the tablet if it is working, despite the risk of bone damage. I was lucky enough to have a positive bone density scan (at my request) at the start of taking Arimidex, but have been refused a further scan to see what changes there have been since that time.
Does anyone have any info or comments on this or is in a similar position and been allowed to still take Arimidex after the 5 year period? Yes it still gives me hot flushes and I manage the joint pain and sleeplessness (sorry if you have just started taking it!) but I can cope with this if i feel that its keeping the cancer at bay.
Thanks for any help in advance…
wisps
Hi. I am six years post diagnosis with rotten prognosis. Similarly I had 11/2 years on tamoxifen then arimidex for the last 31/2. I don’t want to stop taking it either and at my last review clinic was prepared to try to persuade my doc to let me continue. Turned out it was never mentioned. So - I’m going to keep taking it until someone in the hospital or my gp surgery notices. Which could take some time since I don’t seem to be on anybody’s radar. I have been part of a research thingy for which I had DXA scans every 2 years and whilst taking arimidex my bone density hasn’t suffered. As you say, the available information is scarce, given the newness of the drug,however there has been some talk in America of oncologists extending the treatment to seven years.
With the state of the economy as it is and NHS budgets being squeezed I imagine there will probably be a tightening up of gp spending on drugs. I doubt we will be allowed seven years of treatment until it can be thoroughly proved to be worthwhile. Until then I’m quietly submitting my repeat prescription until I’m rumbled.
Good to talk to you, good luck!
Hi wisps
Milestones are so important: pleased for you on the 5 years.
I’ve no experience of arimidex but I have an old friend who has been on it 7 years. She was originally diagnosed in 1989 and had a recurrence in her neck in 2002. (a single tumour which was removed and she then had radiotherapy. My friend’s consultant is a nationally respected oncologist.
It might be an idea for you to ask for a second opionion at the Marsden or similar. I know there’s quite a debate about arimidex going on right now.
best wishes
Jane
Hi JaneRA
Thanks for the helpful advice. How do I go about getting a second opinion from the Marsden? Sorry but have never had to do this before.
wisps
Hi Chalee
Yes sounds like you are in a similar situation to me. Unfortunately the Registrar was on the ball about my timing - in fact she tried to take me off it a year early! She was supposed to ring me after speaking to my consultant, but have heard nothing. Well I am not going to give in easily and will continue to pursue it as I feel I have nothing to lose…
Thanks for your help and good to talk to you too!
wisps
Hi,
My mum is just coming up to 7 yrs post diagnosis. After chemo, surgery and rads she was on tamoxifen for a couple of years and then switched to arimidex which she is still taking 5 years later. When it came up to her 5 yr from diagnosis mark, they were going to stop it but then rang her back to say after a MDT they had decided to keep her on it. This was about a month after I had been diagnosed with advanced stage 3 that was actually stage 4 but they didn’t have my scans back at that point so we reckon that may well have had something to do with it - all a bit coincidental. Think they seem to be looking at keeping people on it longer round here.
Hi wisps
To get an appointment for a second opinion you should ask your GP or a doctor currently treating you to write a letter.
Jane
Hi Jane
Thanks so much for your help, have heard nothing from my Registrar but not going to give up easily! As you suggest will contact my GP for referral but think will try a letter to my consultant first just to see what he says…
Will let you know how I get on.
B
Hi Lizcat
Thanks for your reply - its interesting to see that your Mum has been kept on Arimidex. I will use this information in my letter to my Onc.
Best wishes to you and your Mum
Wisps