Clarabelle - you make an interesting point about the 5 years. I was on Tamoxifen 17 years ago when I was first diagnosed with BC. It recurred in the same breast this April and I am now on Arimidex for 5 years. I only took Tamoxifen for 3 years as the side effects were unbearable but I wonder if I had gone the full 5 whether it would have recurred. 5 years seems to be the baseline in my opinion. I also think we produce less and less oestrogen as we get older. The only side effects I get from Arimidex are a few hot flushes every day but they are bearable and I do get tired but I think that is just old age and a stressful life.
Lying awake yet again last night (other problems causing it at present) but yes, have found since starting Arimidex cannot drift off to sleep, when I do, I wake up an hour or two later. Seems we all have similar problems.
Whilst awake last night I was thinking and came to this conclusion: 50 odd years ago there were hardly any treatments for BC, now there are so many different kinds of BC and many different treatments. It is only by doing the treatments that the doctors can find out what actually works and what is more beneficial in each individual case. If you compare 50 years ago to now, the positive outcome that a lot of us now have, isn’t it better that we are to some degree “guinea pigs”. Just think what it will be like 50 years in the future, hopefully an almost instant cure. This cannot be achieved without the trial and error of our treatments in this our present day. Each course of action will definitely improve the longer it goes on, the more research and the more knowledge that is achieved. I try to look at it this way: I am helping the future like the past has helped me. I sound like “Confucious”.
Love K
I’ve been on Arimidex and 3 weekly Herceptin for around a year now. I think that most of my side effect are due to the Arimidex, judging from other people’s comments. I will be having Herceptin indefinitely and the Arimidex will be reviewed after 5 years if nothing else has changed.
I have the following side effects:
Sore joints - particularly in my hands, but it’s now very mild and only really a problem as regards my playing the bass guitar. I used to suffer from unresponsive feet when I got up from sitting, or got of out of bed. I looked like a drunk on early morning trips to the toilet, but that seems to have got better rencently. Numb hands - particularly when waking up, so I have to be careful about grabing the glass of water and failing to make proper contact.
Tiredness - I still get regular bouts of over-tiredness and have to go to bed for a few afternoon naps to catch up. However I’m working pretty intensively 3 days a week, so it’s not too major a problem.
Cold-type symptoms - I usually seem to have a runny nose and bloodstained hankerchief. Also regular mouth ulcers and cold sores.
Weight gain - I’m much bulkier around the waist than I used to be, as well as having fluid retention around my armpits where the lymph nodes (29 on one side, 11 on the other) were removed. But is this really a result of the drugs?
Menopause type symptoms - I’ve been through various versions of the menopause 5 times now as a reuslt of on & off HRT, on & then off Tamoxifen, and now Arimidex. I never had too much in the way of hot flushes, but I used to get sleeplessness the 1st time round. Arimidex increases the menopausal skin aging, vaginal dryness & soreness, being too hot in general (my 15yrs old son likes to warm his cold hands on my back) and generally turning into my mother.
Fragility - I’m much less emotioally robust that I used to be. More timid, less keen on adventure & new experiences, overwhelmed by comparatively minor events, and more susceptible to stress.
Reading what I’ve just writen, it sounds awful, but it’s not. I still do what I want to do and I’m very happy with my life, although I’m lucky that I’ve got a lot of support from family, friends & work.
Suggestions for things that might help:
Walking & swimming - I do lots of it. I don’t know if it helps my symptoms, but it certainly improves my general fitness & state of mind.
Glucosamine - I wonder whether I suffer less from joint pain than many other people because I have been taking Glucosamine (usually used to treat arthritis) for several years. Not sure if it helps the Arimidex effects but it has certainly made my previously loudly creaking knees a lot quieter & less painful.
‘Liquid Silk” lubricant - Highly recommended for making sex possible, if not completely pain-free. Even oral sex is a problem these days, as I get sore faster than I get excited, but Liquid Silk is the best lubricant I’ve found, and you can get it quite cheaply via the internet.
Arimidex may cause problems, but I’m not giving it up because I’m absolutely convinced that it’s helping to keep the cancer at bay and I like being alive, even if a little battered.
Love to you all.
I’ve been on Arimidex and Bonefos for 2 mths now. I started out fine, but recently started getting bad joint pain in my knees and feet mainly but basically all over. I have also started getting muscle pain, mainly in bed at the end of the day (like when you have exercised hard which I’m not fit enough to do yet!)
I have hot flushes about hourly, including through the night so sleep pattern terrible = very tired most days. I have facial hair too, all be it light. Have vaginal dryness, thin hair and for the last 3 days have had the sort of headache you get after a night on the booze but I’m not drinking at present… This could be de-hydration due to the sweats so am drinking lots of water. This brings me on to the most depressing side effect, stress incontenance, apparently due to my body not having oestrogen to keep the bladder toned.
I also feel depressed but think this is due to simply being fed up with my physical appearance and condition. Pretty miserable ay! Thinking about coming off Arimidex all together but don’t want to go on Tamoxifen.
Irene
I’m with lynnferg on this. I like being alive, if a bit battered! Stick with it IreneM, things might ease up for you in time. I hope it does. x
I also like being alive, if a bit battered!! I’ve been on Arimidex for a year now and, yes, the side effects can be a pain (literally). However, if this little white pill, which according to my Onc. is now considered to be the Gold Standard treatment for postmenopausal hormone-receptive breast cancer, is going to do its job and keep the cancer at bay then I am happy to take it. I would say that the side effects have lessened as time has gone on so give it a little longer IreneM and see how it goes. Despite the side effects, I am leading a busy and happy life once again, something I never thought I would do when I was diagnosed 3.5 years ago.
Jo
What a fantastic idea to pool all our experiences with our Arimidex. I have been reading the comments everyone has made and can agree with most of them. For me the worst thing is the flushes and sweats, so uncontrollable, had one yesterday in Debenhams in Birmingham at the till, sweated all over my purse, getting money out and in the end had to buy new underwear to change into as i had forgotten to take spare with me. Just returned from Lanzarote where the sweats were unbearable, reduced me to tears on a few occassions. my doctor put me on Chlonidine 1 tablet 3 times a day about 4 weeks ago and though that has just about taken the peak off them they are still dreadful. It is the sickness I feel after a sweat and the energy it takes out of me. I usually have around 16 a day! I have been on Arimidex since July 2007 and am only now noticing I have pain in my hand (same one as lymph nodes removed) and cannot grasp anything in the morning. I wake with pain in my arm at night and have what i call fizzing in my hand constantly.
I try to think the stronger the side effects the stronger the drug but when I am dripping in sweat I long for my HRT back though I know it can never happen. I must admit I look with envy when out at other people who have their lives going on as normal who are not sweating and do feel that it is the quality of your life that counts. To those people who gave up their drug treatment to attain this then I admire their courage and hope that they have very long and fruitful lives.
Weight! I have already put on 10 pounds and my winter clothes just won’t fit. How much more weight will i put on?
Suzzanne - when I was on Tamoxifen I had terrible hot sweats which were totally interfering with my quality of life. My husband is a GP and suggested I try Pro-Banthine which I did and it worked well in that it is a drug to stop excessive sweating. I still got red and hot but no sweat and it made a huge difference. Goggle it and you will see what I mean. You can only get it from a GP. Am now on Arimidex and flushes are more tolerable. My heart goes out to you - even though it was 17 years ago I can still remember dripping and the embarrassment at social occasions. Let us know how you get on.
I am finding Arimidex much better than Tamoxifen. I lasted 3 weeks on Tamoxifen, feeling very nauseous then getting a huge, painful swollen ankle/lower leg. My surgeon arranged for an immediate Doppler USS scan for DVT, but it came back clear. He took me off Tamoxifen immediately then a week later I started on Armidex and have been on it for 4 weeks now. Other than the hot flushes and feeling slightly more tired, I don’t seem to have any other side effects whatsoever…maybe it’s early days yet though. If the hot flushes become too unbearable, I shall ask my GP for some of the medication mentioned on this thread for it.
Thanks Olivia07 just realising i am not alone helps wonderfully. I am seeing my doctor on Thursday about the Chlonidine, perhaps uping the dose as hubby and i are off to Corfu a week on Friday and I do not want the same problem as i had in Lanzarote. Hubby has suggested we spend most of our time in a nice air conditioned hire car, can’t believe it as i am the worst sun worshipper ever, usually spend all summer out in the garden with my books! I sympathise with everyone else who has their lives disrupted by these side effects, had massive night sweat last night and have given up the duvet for sheets and blankets but that extra one i put on last night as i was cold going to bed put my temperature into overdrive! It does disturb your sleep and as I had a dental appointment this morning for a new crown I was so tired I almost fell asleep in his chair!
I now carry a hand fan around with me and a change of underwear,and a small towel. My pharmacist who also had BC told me that the side effects do wear off in time, I live in hope for that day, even 4 flushes or sweats would suffice. Poor hubby has no idea what he is walking into at night when he returns from work, he very timidly puts his head round the door to see if i am smiling or crying, is emotional mayhem a side effect of this drug also.
This week being the start of breast cancer month has been hard, I do so support the cause and myself am on a mission to tell women that i had two different cancers in my breast which neither of them were a lump, the popular belief being that all breast cancers are a lump, well mine were not which amazes people. Everywhere i have been today even the bus shelter where i get my bus had a big poster advertising it, my dentist had a leaflet and the restaurant where i eat had a form for sponsoring a walk in aid of it. I just feel sad when i see all this and realise what we have all been through, the surgery, the treatment and all its side effects. I just cant seem to let go that this dreadful disease is still out there and affecting so many peoples lives. My sister in law was diagnosed two years ago and i remember being terrified for her never ever thinking the same could happen to me. My cousin is 9 years on from her diagnosis and tells me that now without any recourrance from the initial diagnosis and treatment she never even thinks about BC until she goes for her 3 yearly mammo. She says it was a small blip in her life! I think when we have these side effects it is a constant reminder that we have had BC and that thought alone is enough to bring on a flush!
My surgeon was not sympathetic to my flushes and sweats and just told me to put up with it, fortunately my GP has been sympathetic and hence the Chlonidine but I had to mention it to him as he was not sure what treatment to give to me. I do think if i could have some control of my flushes and sweats it would definitely aid my mental state as well as i could resume my old life again. At present i have not returned to work and am beginning to find the financial situation a bit hard, I work in a charity shop but it involves a lot of standing and heavy lifting, furniture and china etc., hubby says he does not want me to go back, thinks the stress will tire me out and wants me to look for something a bit lighter but in my neck of the woods there is not a lot going on retail wise and there are about 40 to 50 people for every job.
God I had better finish this is looking like an epistle, all the best to everyone out there.
Suzzanne - I think you will find the flushes get less with time. I started Arimidex in April and they are only now just settling into a pattern of 10 a day but they are bearable and the busier I am the less I seem to let them get me down. I do a lot of yoga and work out in the gym 4 times a week which I feel helps me. Funnily enough when I was in Spain in July I hardly noticed them but as I hit Gatwick they were back. When I was on Tamoxifen I used to sleep on a towel until I started on Pro-Banthine which stopped the actual sweating. Maybe worth a try. It worked for me and I was nearly drowning at times!
Have a wonderful holiday in Corfu, an island I really love.
Has anybody had breast pain/tenderness with arimidex ?
Jane
Hi Jane, Yes I have had pain in my remaining breast which my surgeon assures me is referred from my ribs. I’ve had a bone scan and had the rib area xrayed which didn’t show anything. My last mammogram was ok. He says that Arimidex shouldn’t cause breast pain as such. So for the moment I’m going along with that and assuming it’s more bone/muscle/joint pain referred from the ribs. It’ll be interesting to hear if others have anything similar. x
Hi Chalee
Thanks for the reply
I have had pain breast pain in my remaining breast from about the time I started Arimidex (2 weeks ago). Today I had it checked out, the ultrasound was clear and tissue appears normal. Nobody mentioned arimidex side effects, thats just me looking for an explanation. Surgeon suggested evening primorose oil ?
Jane
This thread is brilliant! My Arimidex side effects are:
Stiff very painful joints (all of them) especially lower back and hips - I take opioid drugs for the pain
Extreme tiredness to the point where I cant think straight
General weakness
Unable to sleep at night even with sleeping pills
Very poor concentration
Thinning hair
Skin fast losing elasticity
I darent stop taking it though because of a poor prognosis.
Janice.
Oh Suzzanne, I really feel for you. I do have flushes every hour, and do sweat but not so bad I have to change my underwear, that must be awful for you.
I just wanted to say that when i went to Turkey in August I didn’t notice my flushes at all. It was so hot every hour of every day (40+ degrees in day, 27 at night) I think I flushed but didn’t feel them! First one I noticed was on the plane coming home, weird ay?!
Enjoy the hol, chuck water over yourself or spend lots of time in the pool.
Love irene
Thanks Irene,
Hubby is hiring an air conditioned car for me, i am not going to go through what i did in Lanzarote.
Was in Tesco on Wednesday with my daughter and one came from nowhere, i was at checkout got purse out and the next thing was dripping on the belt moving along, the young girl on the till was horrified, i am so pig sick of telling people it is a cancer drug making me sweat so much. As for make up there really is no point i just sweat it straight off my face.
I went back to my doctor yesterday and as he is really very sympathetic i explained everything to him, he was so sweet, said it was intolerable for me in this day and age to have to put up with that after all i had been through already, (said he was lovely) he has upped my dosage of clonidine as he says i was on a very tiny dose and has even said i can up it myself on holiday if i need to. Well perhaps there is some hope for me after all. He also said any worries i had whatsoever i was to go and see him no matter how trivial they may seem to me, he is there to help me and that is what he wants to do. I already feel a weight has been lifted from my shoulders, his name by the way is Dr Guy Skilton from Weeping Cross Surgery in Stafford. So anyone in my area that is the GP to see.
On another thread i posted that I have a new very expensive crown fitted on Tuesday, i have been in total agony since, cant eat only suck my food, hope to God that it settles down before Corfu, my dentist said it is because he did a lot of poking around in my gum and the gum is bruised, he gave me three days antibiotic because of the no lymph node and infection thing but today is Friday and still last night i got no sleep with it! You know how it is no sleep makes us girls shattered the next day and our flushes and sweats a whole lot worse, you know how it goes round and round!
Anyway i am braving it on the bus today into town, can’t wait to drive again but hubby still nervous of it with my swellings being under left arm. My daughter saw a bag in a beautiful little boutique and i thought i might go in today and buy it for her for Christmas! My first Christmas purchase! Think sometimes i need to get out of the house as i tend to brood when i am alone for long periods then i sweat everywhere. Have packed my shopper with my towel and change of underwear just in case! The weather forecast for today is good so silly to stay indoors.
Love to everyone out there
Suzy
I started taking arimidex in May 07 following lumpectomy and radiotherapy. I’m 51 and just post menopausal. My cancer was ER+ve and Her2+ so arimidex looks like a better option. I feel lucky after reading the postings here that I have had no side effects. However, I do eat a very healthy diet now - loads of veg and fruit, seeds, beans, pulses etc. No alcohol, lots of water and virtually no refined sugar. I feel good. I also walk or cycle 4 -6 times a week for 30 - 60 mins. I take vitamin and antioxidents and flax seed oil (omega 3) as recommended by my nutritional therapist at Breast Cancer Haven. I’ve also had some homeopathy. Don’t know if these things help but I can honestly say physically I’m fine. It’s living with the Her2 status which is hard.
Good luck to all.
Christine
I was very interested to read your comments Clarabella. I’m 49 years old, ER/PR positive/HER2 negative. Stage 3. I’ve just finished chemo. Have refused rads and hormone treatment. Like you, I’ve met a number of women whose cancer returned soon after the five year mark. Seems to be an alraming coincidence!
Cat
Hi All,
Interested to read about diet - can anyone get a nutritional therapist from the haven - shall look into this - am currently launching myself into milk free diet (tho just had some m and s chocs bought for me) and loads of veg (veggie anyway) and nuts and seeds etc. Reading lots about appropriate diet - and yes cut out coffee/alcohol and only honey - (trying not to eat refined sugar) feel loads better but as only doing this for less than a week will see…Only 4.5 weeks post surgery so not quite ready to implement exercise programme - but will do this…
Am on Arimidex, feel hangoverish some of the time, then full of energy, and feet and ankles ache/sore, sweats thick and fast - 4 in the night start with waking up with nausea - chill pillow helps - just put on some sea sick bands (work on acupressure points). Becoming more articulate, but memory not so good could be post surgery or possibly the arimidex ?
Taking supplements (trying omega 3 tomorrow ) hoping the joint aches will lessen cos feel a lot older than 47!
Bye for now.