Spooks - Was told my ER grade was positive - but was told it was the maximum 8/8 so would think that it may be ER+++ too. I don’t know how this works. Maybe the size is the difference. Hopefully they will be able to switch you to a different drug which you can tolerate. Glad to hear you’re feeling better - so quickly! Take care Looby x
Thanks for that Looby… with how I feel today I am seriously considering my options for future hormone meds. Obviously I will discuss it with my surgeon next month before I make a final decision. It’s just a shame that you can’t do a month of taking meds and then have a month off them just to have a break from the nasty side effects.
I had completely forgotten what it’s like to feel like I do today and I am revelling in it.
Hi Spooks, Your diagnosis sounds very similiar to mine - same size lump, no mets or lymph node involvement but only E+++ no pr ( like you looby 8/8). Will probably have arimidex as had hystrerectomy 4 years ago.
Hope you keep well spooks. It is lovely to have a ‘good’ day. I am nearly at the end of chemo and white cells taking a pounding at the mo.
Rach xxx
Hi Spooks, i was a 1.6cm grade 3 hormone receptive, started on tamoxifen, then zoladex, then hysterectomy plus bilateral oopherectomy then onto arimidex, been on it since the beginning of jan this year, i discharged myself from the oncologist and just see my surgeon, i too ache all over, my lower arms and hands are useless in the morning and takes about 10 minutes before i can even use them, then its the crab walk down the stairs, i take sleeping pills as i get no sleep at all if i don’t due to the aches, i had been on clonidine since jan as well but i am all but weaned off that now due to the high bp i developed whilst on it, so now i have the hot sweats and flushes back with a vengance (too scared of staying on the clonidine as it felt like a stroke waiting to happen!) i spoke to my surgeon about this earlier this week, he suggested my going back on tamoxifen, but i had felt so ill on that that i feel that that is not an option, so now i have to wait 3 months for my next appointment to see how i get on just on the arimidex, adcal, and glucosamine, i have been told i will be on this for seven years, just past my first half year and its awful, i feel that my quality of life is so poor, no sex life, all my joints ache, and there is not a thing they can give you for it, but i am too scared to come off it.
Alisonx
rachy7 I didn’t have chemo, only 15 sessions of radiotherapy after my lumpectomy and I think that’s the minimum radiotherapy sessions you can have.
alison so sorry you feel so awful and I can empathsise with you totally.
Sorry spooks. Chemo brain. And I think it was wishful thinking on my part that my dx was like yours. Big major difference. I havre a grade 3 and your grade 1! Apologies
Rach
Well after not taking Arimidex for 4 weeks, I can report that I feel great… I feel back to normal to how I was before BC was dx’d. I see my consultant tomorrow and I don’t care what he says, but there’s no way I am going back on to Arimidex or any other hormone treatment and that I am adamant about. My choice, my life and my body!
Hey Spooks - good to hear you’re feeling so good - but never say never… You might just find something to suit you. Talk it over with your onc and be prepared to try another type if they think you need it - but hopefully they may think hormone therapy not essential for you. You’ve had a bad experience - but does that mean you’d never eat in that restaurant again? I totally understand that you don’t want to feel like c**p again - but hope you will talk it through.
Spooks - when did your symptoms start? I started Arimidex last week.
I have been on Arimidex since Jan this year, when I changed after two years on tamoxifen. I had a few side effects on Tam and felt that that those subsided when I changed medication. But that lasted just for a few months.
So now I am ready to join the club of Arimidew-victims. I feel like a 90 year old, and I was really a fit 54 year old just a few months back.
There is a special gym just for cancer patients in my hospital and there is always a physiotherapist present there in daytime. I will try to get there next week to ask if there are any spesial excercises which can help to ease the pain. I will surely share any advice with you.
But I am too scared of having a relapse or secondaries even to consider getting off the medication. My tumour was 3 cm, grade 3, hormone positive (of course), Her2 neg. One sentinel node had a micro met, 0.3 mm, the rest of the nodes were clear.
Best wishes to all of you,
Maia
loobytuesday… symptoms started almost immediately I started to take Arimidex at the beginning of last September especially the tiredness, to begin with I was put straight on Tamoxifen after the op but was taken off them because of horrendous swellings in my ankles. I was told the tiredness was because of the anaesthetic/operation I had on 10th August. I have had far bigger ops before that didn’t leave me feeling drained and wanting to sleep 23 hours out of 24. After radiotherapy in Octoboer/November the symptoms got worse and I was told it was radiotherapy making me feel drained. So I gave it the benefit of the doubt… so after 10½ months on Arimidex and no improvement in constantly feeling tired, together with the aches/pains, nausea and a host of other symptoms, I decided enough was enough. I have no idea how much % this reduces my 5 yr/10yr prognosis but my cancer being only Grade 1 - ER+, nodes clear, above average bone density, no abnormalities on mammogram last month and a good NPI prognosis, I’m willing to take my chances.
I am not looking forward to this afternoon as I guess my consultant won’t be too pleased with me… ho hum
Well I am officially off Arimidex, my consultant said that as my cancer was such a low grade one with an excellent prognosis, he doubted whether Arimidex or any other hormone med would be of much benefit to me as things stand now.
I have my life back… whooo hooo
Hi Spooks!
Congratulations on having your life back! I am so happy for you.
Best regards,
Maia
Thanks Maia, I can’t begin to tell you how chuffed I am, I really thought I’d face opposition of some sort when I saw the consultant today and be persuaded that I was doing the wrong thing in refusing to take Arimidex again.
Oh Spooks - that is really great news! Faaantastic! I was just worried about you and was hoping that your onc would say this. I know someone who was strongly advised to take hormone treatment - but refused - and then got recurrence…
I have been advised, like you, that it is my choice, whether to take arimidex. I am opting to take it unless, like you, it affects the quality of my life! I am beginning to feel quite tired - but I think that is more because I am having stronger hot flushes now which wake me up in the night many times. Hopefully this will settle down. I start rads next week too so hope not to get double symptoms!! Before this bc I had hysterectomy in Feb (with oophorectomy) and prior to that had PVFS (post viral fatigue syndrome) - not my year at all! So you can see tiredness seems to be a common factor for me! I often wonder if the PVFS had anything to do with the cancer starting/growing. Probably not - but we all look for a reason or a link don’t we?
Wish you all the best - go and get on with living!!! Loobyx
HI everyone,
Joined this thread late, but I like most of you don’t know if I can stand to stay on Arimidex much longer. Just got up as can’t settle for aches, pains, hot flushes, restless legs. Just had another Ibuprofen, hoping that things will settle down and I can get some sleep! I can so emphasise with all of you. But, don’t think I’m ready to take the risk of stopping taking it yet, would be so terrified of it recurring, but then on the other hand, life doesn’t seem worthwhile at the moment - no quality, just pain. Sorry to come on here and moan so much, but it’s good to be in company of people who know what it’s like. OH doesn’t seem to understand, and friends/relatives I think are getting a little bit tired of my always being ill. Never mind, tomorrow’s another day - maybe things will be better, think I’ll make an appt with my onc and see what he says. Take care all, Jean x
Hi all - update from me…
Saw my GP last Monday about AI’s and alendronate…told him the Aromasin was just as bad as Arimidex and he has prescribed Femara - told to give my body a break for 3 weeks, and I will start it after I come back from Spain at the end of August. Not holding out much hope that it will be any different to Arimidex and Aromasin, but willing to give it a try. The bisphosphonate alendronate gave me serious oesophagitis and my gastro advised me to stop it and have an infusable one, he suggested teriparetide or strontium ranelate. GP said not to try two new drugs at the same time, so will take Femara for 3 weeks, see how it goes, then see GP again for referral about a bisphos infusion.
My dx was 2 cm, grade and stage 2 idc, total axillary removal, ER+, HER2- but with a Nottingham prognostic indicator of 4.4, which doesn’t look too good I guess.
Having been on an AI for 4 years, I think I may have got all the protection I need against a recurrence as the Onc wrote to my GP (don’t understand why I didn’t get a referral to see her), but at least I have got some semblance of life back now. No hip, hand or feet pain, just trying to cope with a new bout of steroids (budesonide), hence writing at 4 am, been up since 2 am. I think if I had realised my joint pains were due to Arimidex I would have stopped much earlier - I just put it down to dx of osteo-arthritis/osteopenia - how wrong can you be? And, why didn’t the Oncs tell us about these side effects when first prescribing them?
As Jean so rightly said, how great to be able to share our bc problems with others in the same situation - no-one can possibly understand how we feel until they have walked in our shoes and I wouldn’t wish that on anyone.
kind regards to all,
Liz.
looby… thank you for your kind comments. When I was suffering horrendous hot flushes in the night, I bought a Chillow pillow and my BC nurse suggested I took Starflower Oil Capsules which contained a minimum of 220mg GLA, she told me that it would take at least 6 weeks before I saw any benefit from them, I began to notice a difference after 4 weeks. I would recommend anybody to take them to help with hot flushes.
I had an operation on my shoulder in May and I had to stop taking them for 2 weeks before the operation and wow did the flushes return with a vengeance! I couldn’t wait to take them again… as soon as I did, the flushes abated again. Needless to say I don’t take them now, in fact my daily medication has reduced dramatically now I don’t have to take painkillers, anti-nausea tablets and anti-inflammatories.
My daughter insisted my husband went with me yesterday to listen what was said, as she didn’t trust me to tell the truth because I was so adamant about me not taking Arimidex again, she thought I’d tell porkies about it being alright to stop it LOL
I hope everyone gets through these traumatic times and good luck to you all x
Spooks - what a great tip, thank you. I will definitely give it a try. Glad to hear your daughter is keeping an eye on you!! Take care, Looby
Well 6 weeks later and no Arimidex, I feel soooo much better, I get a good night’s sleep, I can go through the day without wanting a power kip. No aches and pains, no hot flushes, no feeling of nausea…
It’s gone a long way in making me feel that I can put the cancer to the back of my mind and not be reminded of it 24/7 like I was when taking Arimidex.