I am currently considering giving up on Arimidex after 4 years and would really appreciate any comments anyone else has on this subject: I think the folk on the forums are often more helpful & informed that some of the " professionals!"
I continue to have hot flushes, particularly at night and although they are not as frequent as they were, they disturb my sleep & are not pleasant. My poor hair has not recovered from Taxotere & is very thin - I don’t beleive it will thicken until I stop Arimidex.
I have also gained weight and I am having increasing probs with arthritis in my shoulders. I appreciate that these latter two may not be linked to Arimidex but I would really like to know if another year on the drug would actually alter my prognosis- ie what studies have there been as to the long term efficacy of the drug. Why 5 years? Why not 6 or 7 or 8 …or 4?
I don’t want to be foolhardy but at 70, quality of life is increasingly important
I had hoped to discuss this with my onc when I had an appointment with him in August (after a 2 year wait!) but was fobbed off with a registrar who was really not very helpful - eg suggested I go onto Tamoxifen if my side effects were ‘so bad’ .
I have decided now that I’ll pay for a private appointment with my onc in order to have a ‘proper’ discussion with someone who I respect and who has always treated me as a reasonably intelligent adult!
Hi topsymo I have been on Arimidex for nearly two years and I must admit the side effects whilst mild compared to some people do worry me in that what will happen to be if I carry on for another 3 years. Not only are my bones/joints stiff, i do have pain in my legs and I am now noticing my hair is definately thinning. I agree that the SE of these hormone theropy’s are not taken that seriously as those in the medical profession seem to think that its something you will just have to put up with. Whilst I am extremely grateful that these drugs are availabe and feel guilty ‘moaning’ about them as they are probably saving my life and keeping the cancer at bay - I would too like to know more information as to the long term effects on health - and why suddenly after ‘five years’ its ok to stop taking it - why not three years or four years… no one really explained that to me - in fact my onc suggested to me that I may need to take it for 7 years as the ’ thinking is changing and whilst Arimidex is a fairly new drug it is now thought that longer explosure to it less risk. It would be helpful to get some proper information on this which is not forthcoming from my medical team who sometimes treat me as if I am a bit simple. Not sure where we can go with this but am willing to pursue it maybe a joint effort would be more successful?
Hello saffronseed and topsymo
Whilst waiting to see if other users can help with this maybe a call to our helpline might be of use.
The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
Hello
I was on Tamoxifen for the 5 years and started on an AI called Letrozole just over 3 years ago. At first I told I was to be on Letrozole for 3 years and then last year my Onc said that it would be for 5.
I have to say that I was disappointed and shocked as I do not get on at all well on it. Whilst I do not have the aches and pains that many ladies suffer from I have had major problems with my mouth which started off as just a dry mouth mouth but I am now under my hospital having been diagnosed with Burning Mouth Syndrome which I have been told is common in postmenopausal women (1 in 3). This all started within 6 months of starting Letrozole.
My frustration stems from my Onc who doesn’t really want to accept that this is a side effect of the drug and I don’t really know if there have been any trials of Letrozole for 5 years after 5 years Tamoxifen(I stand corrected if there is one) I know my ER was 6/8 and 6 out of 17 nodes were affected and my Onc did say that he would not recommend me stopping Let due to this.
I always said that I would take whatever I was offered but there seems to be so many variations of times that we should be on these AIs.
Hazel
I totally agree about quality of life Topsymo, I am 65 and have been on Capitabine (oral chemo) for the past 15 months and have been slowly getting worse over recent months as far as side effects are concerned, other people have noticed as well. Last week I was taken off it and am to start a different type of hormone treatment involving injections.
I have been thinking recently when I have been feeling ill, due to the treatment not the cancer that I don’t want to spend whatever time I have left feeling ill, rather have a shorter time feeling well.
Its a very personnal choice but there has to be quality otherwise whats the point.
Jan
Thank you all for your replies & helpful comments. I don’t want to act foolishly and in the end I guess I will accept the advice of my Oncologist when I eventually see him - as I feel he has always been straight with me in the past. It just seems from what I have heard and read that the 5 year figure is somewhat arbitrary…and indeed why are some people recommended to continue with Arimidex even longer?
My BC was Grade 3,Stage 3 and hormone postive ++ and of course I am grateful that it has been sucessfully treated and so far (4 years from diagnosis) there are no signs of metasteses. Hopefully I will not die from it (irreverent thought- better BC than dementia i guess) - but on the other hand, the side effects of treatment can really impact on one’s quality of life can’t they?
Topsymo, that’s exactly what I’ve been thinking. I am also at four years, 2+ Tamoxifen, 1 Arimidex and now nearly 6 months exemestane.My problem is that I was so overweight and there is a genetic disposition to diabetes, and I have not been succeeding at losing weight or keeping my blood sugar down. I lost weight before chemo and I reckon I could do it now if it weren’t for the tablets. I also put on weight, and around the stomach and neck, and I have sleep apnoe - all since diagnosis, and if I could lose weight I might get away from that. I am also not very fit - better at swimming than walking. I think I will be a coward and complete the 5 years, but could I avoid diabetes if I stopped now? I am sick and tired of doctors telling me to lose weight as if it was a new idea. I tolerate the hot flushes, dreadfully thin hair and now acne, but these other problems (which I probably wouldn’t have if I wasn’t overweight) seem serious to me. My doctor also makes very light of these side effects - doesn’t think they have anything to do with the drugs etc.
I am also thinking that the tests have all been done on 5 years and not on 4. Of course, the fact that some studies show that over 5 is good suggest that 4 may not be as good as 5, unfortunately
I have taken Arimidex for 3 years and had terrible joint pain to start with but I have found swimming 30 lengths of the local pool works wonders and my body feels relaxed and pain free afterwards for a couple of days.I also think a back massage helps a lot. The most important thing is to take the Astra Zeneca brand of the pill as “Teva” is a cheaper version and in many people seems to cause more joint pain.I am now having to consider taking bone density drugs to continue with Arimidex as my bones are thinning. Does anyone out there have experience of these? I am concerned as I believe they give you indigestion and I already have an acid stomach and reflux.Also has anyone out there gone from Arimidex to Tomoxifen ? I would love to hear from you to see how the change affected you .I also have no idea why they say 5 years for Arimidex…will try to find out and let you know. By the way regarding the swimming I am not athletic and I am 60!
topsymo
have you thought about asking to try an alternative AI… a diff one may have different side effects or even trying tamoxifen which does have more effect on your flushes but less so on your bones.
have a chat to your onc and see what they suggest.
best wishes x
Posted on behalf of new user Wendy - (Jo, Facilitator)
This has made interesting reading. I have been managing the side effects from Arimidex for 4.5 years reasonably successfully and managed to maintain my employment in quite a pressurised job. However, this last 6 monts the side effects have become more severe and much more difficult to manage. I do not want to give up taking the tablets now with only another 6 months to go (note sure why 5 years either) but am finding it very difficult to do my job and this is now stressing me out which makes the whole situation worse. I am 60, would love to retire but just cant afford to do so at the moment. Is it usual, I wonder, for the side effects to get so much worse this late into the treatment? Good luck to you all
Hello,
I switched back to tamoxifen from Arimidex . The side affects on Arimedex for me were terrible especially the joint pain. My onc said the stats for Aramidex were slightly better than the tam (especailly if one did two years on Tam first) but not hugely different - I didn’t enquire further. I hope I made the right decision - only time will tell.
cheers
caroline
I don’t actually think my side effects have become worse with time - i’m just older and more fed-up with them. I think the flushes were more frequent at first than they are now - but i still get them and would prefer not to; likewise I would prefer not to have increasing arthritic pain and I would prefer my hair to regrow properly. If stopping Arimidex would bring these things to pass, I’d like to stop it asap.Most of all I’d like someone with the necessary knowledge to explain to me why I might be foolish to do this…and to back their advice with some actual facts and figures.
On the papers published on the interent it is very difficult to find your way through the ‘medicalese’ but the 5 year figure seems to be the benchmark; I just wonder why, and if it’s proven that losing a year would actually make a difference?
Is it an arbitary figure - why wouldn’t it vary from person to person?
My onc told me after i finished ‘active’ treatment that my prognosis had improved statistically but that from on in there was no way of knowing when/if metasteses might appear - no test that could be done, only statistical chances - so on what research finding do they decide on Tamoxifen/Arimiidex/Femara for 5 years?
Are there figures published showing people who have come off aromatose inhoibitors after x number of years who have then gone on to get secondaries - and are there figures for those who have still been on the drug when they developed secondaries anyway? Are there tests to say who is most at risk-is it still all to do with one’s primary prognosis and statistical chances calculated on one of the computer indeces?
Questions, Questions, Questions …and after I’ve seen my onc in mid-Oct will I be any the wiser?
Topsymo
The answer to your last question is “hopefully, probably not”
I am on Letrozole, now in year 4 and after 5 years Tamoxifen and it was only last year at my appointment with my Onc that I was told my ER was 6/8 and along with 6 out of 17 nodes affected(I knew this one) this was the reason that he wanted me to stay on Letrozole for 5 years not 3 as I was originally told. I have yet to find any trials that have taken place for Letrozole to be taken for 5 years AFTER 5 years of Tamoxifen. I found one where it was taken for 3 years but not 5 (if anyone has found details of this trial please could you let me know)
I am not having a very good time on this drug and have began to feel that 3 years is enough. I have lost a load of weight since giving up Tamoxifen and going on to Letrozole, I am now under 8 stone and the results of the blood tests and chest xray show that all is okay, so is it the drug?
Now I reckon that as the long term benefits of being on this drug for over 3 years is “banked” and any time over this period is a bonus so whilst I have no plans to give it up completely if I feel really rough I will take a short break from it. A few weeks ago my inlaws were coming to stay so I stopped taking it one week before and whilst they were here and I felt so much better, no sore mouth, no indigestion etc. I am now back on it and the indigestion is back and my mouth is dry and painful, it seems to build up as time goes on.
I hope that you get the answers you are looking for and your Onc is sympathetic to your problems.
Hazel
Hi Summerb
I have been on letrozole now for three years and have suffered a decrease in bone density. I started taking tablets for this new problem 6 weeks ago and am coping ok. My regime is one tablet once a week. It has to be taken on an empty stomach(first thing in the morning) and then you have to stay upright for at least 30 minutes. Strange at first but I have adjusted and taken it in my stride now. Unfortunately because of an interaction I have had to stop taking the arthritis tablets that I have taken for the last 14 years. That is proving to be a whole new learning curve.
Good luck Andie
Hi Summerb and Andie T
I have been on Anastrozole (Arimidex) for three years and after a recent bone scan have been told I have some low bone density. This follows two fracgtures within 14 months, the most recent a broken upper arm in July. I was given Adcal initially but my GP rang yesterday to say that I would be prescribed the once a week tablet as described by Andie. I am feeling a bit anxious about it as to me new meds always seem to mean new s/es. I have also been told to continue with the Adcal and then be re scanned in 12 months time. So thanks your posting has reassured me.
At the end of the day it seems a small price to pay as the pain and healing of fractures isn’t a great experience. Let us know how you get on Summerb.
Laurasue
Sorry meant to say Summerb, the Adcal did give me a small amount of gastric discomfort, not particularly indigestion more like an unsettled tummy and a bit of nausea. You maybe f ine as these things can affect us all differently. Good luck.
Laurasue
I have also been on Arimidex/Anastrozole for nearly 4 years after being dx with lobular bc Grade 2 HER2. Whilst I feel that I was given the impression I had a poor prognosis I am glad to still be here 4+ years later, I am suffering terribly with side effects from the Arimidex. From the beginning I have had terrible pain in my feet. I have been told everything that it is plantar fascitis, given tablets for epilepsy which I do not have and did not help., Of late the pain has got worse so much so that I am now challenged to walk at all on some days. I take ibuprofen with some benefit. I have also gained even more weight, nearly a stone and my hair is still thin in places and has never recovered after taxotere. Is this all normal? I am due to see my GP shortly and am beginning to wonder, from reading the comments on here if the change from Arimidex to a generic has increased the side effects. I am beginning to get very depressed with it all.
Having had a mastectomy, lymphectomy, (1 affected node) 4FEC and 4Tax chemo, Radiotherapy, 17 Herceptin, and 4 years 7 months of Arimidex(Anastrazole), I had my final appointment at the breast clinic two weeks ago. The doctor told me I could stop the Anastrazole, even though I have not quite finished the whole 5 years. He said that theoretically my cancer was eradicated after the surgery and that all the rest of my treatment including the Anastrazole, was to deal with any too small to detect cancer cells which may have been floating around and, because I have very low bone density it would be OK to stop the Anastrazole a little early. I hope he’s right!
Thanks everyone for your interesting comments - and especially for yours “Justme” - you have given me encouragement that my onc may say the same when I see him in a fortnight’s time.
I had a WLA and total clearance (one affected node) then 3 FEC and 3 Tax plus rads: my BC was Grade 3 Stage 3 - I don’t know how much difference all these details make - I would like to think each patient is really considered as an individual but supsect that it is usually ‘one size fits all’ … unless one raises a query. I just want an answer to my original question:why 5 years? Why not 4 or 6 …or 8?
Sorry to be slow to thank all who posted comments for me, all very helpful especially as this was my first time on the forum! I was quite overwhelmed! Just thought i would let people know that my Consultant says that switching from Arimidex after 3 years to Tamoxifen is still better than just being on Tamoxifen the whole 5 years and has the same results as switching from Tamoxifen after 3 years to Arimidex. 