Hi all you lovely ladies Not sure whether to put a prob on here or start a new thread but here goes. Since starting on Arimidex last July 2010 I have from the first tablet felt really nauseous. I feel fortunate that I do not ache I do have hot flushes but did have before BC and these are now more intense and sharper.I am coping with these But I really feel so sick as bad as on and worse than on chemo. At worst I am awoken with hot flushes. So insomnia does not help but feel sure that nausea is not worstened by sleeplessness.
I am back to work on phased return and am still feeling nauseous and TMI but could throw up a lot of the time.I cannot figure out the trigger for this being worse.( or perceiving this as worse) Obviously getting back into work situation is stressful but I am feeling enervated by this. But the nausea is so awful I am eating the right things but as on chemo feel like eating fruit +++ plus water and green tea and ginger. Cannot stomach much else
Oh lovely ladies any comments? Really struggling at the moment any comments? Jackie xx
Just an update. Saw my Onc this morning and we discussed my staying on alendronic acid ( Told I was borderline for it in Oct after being put on it in July/Aug 2010)I had decided that I would stay on it and wanted my Oncs opinion too as I have been borderline for so much treatment and get left to make my own decisions. Any way there we have it I will continue with it and Adcal D3. I am to be referred for another DEXA in Jan next year along with mammo and Onc appt 2 weeks after that.
Meanwhile had my cholestrol was done 2 weeks ago and is only 0.3 less on all areas tested still it hasn't gone up and I am knocking back the Benecol every morning and low fat diet too so hoping for the best with that too.
Dianne love your new photo is that one taken on the cruise? Love to all. Jackie xx
Your looking great! Love the new picture, I hope your keeping well
Hugs and Best Wishes
Hello my darlings, haven't been on for a while as so busy, however, hope you are all ok. Love the new piccy Isabelle and glad you enjoyed your massage. Kris and Jackie, hope you are both ok and having a great weekend. Ann, I've written to you already privately. Take care everyone, loads of love, Dianne x x x
I haven't been on here for a few days, I hope everyone is keeping as well as possible. I've been to the hospital today for my massage therapy, I can highly reccomend it, very relaxing, mind you it took me 20 mins to get a parking space, I was late for my app so I was in need of relaxation when I eventually got in there. I've got one more session out of a course of 6 left to go.
Thinking of everyone,
Like Kris, I am on Femara but I think the SEs of having low oestrogen are the same. I really find that Evening Primrose Oil helps. As far as breast pains go, a Nurse Consultant told me that it can take up to two years for everything to settle after surgery and rads.
I had never heard of a Nurse Consultant but this is what she does, apparently:-
I´m back again !
Isabelle ,If I´d known you were going to Gib I would have arranged to meet up !
I get pains like that in my affected breast , really sharp pains that make you suck your teeth , it does´nt last long but there´s another funny sort of pain that I cannot describe , sort of a stretching horrid feeling . I was really getting quite alarmed about it , you know , thinking all sorts of things .However , I´ve had the results of my mamo , and bloods and a scan , and everything is fine , so I´m assuming it´s just something I´ve got to live with . I see the surgeon in a couple of weeks and might ask him , but as everything else is ok it´s put my mind at ease even though the pains still continue , but they are only occassionaly , perhaps once a day .
My cholesterol is now sky high although my onc said " it´s not too bad " , dread to think what he considers "bad ".
Dianne poor you another trip to the dentist never ending is it.Go girl get those glad rags on and drink some of that wine for me too.
Isabelle hope the pain is getting less.Not sure what to suggest. I ended up being referred back to physio as upper breast area and axilla felt very tight and had shooting burning stabbing sensations in them. Physio a bit stumped but all this came on during and after rads when it had settled after surgeries.It quite frightened me as it had all settled down. Am persisting with exercises and hoping.
Love to all you ladies Jackie
Hi Girls, thanks for you good wishes Isabelle and Jackie. The dentist was crap! I had to have one half of a deep clean because the Bondronat (for the spine) is affecting my lower teeth - they're bloody rattling!!! The other half is next week - lucky me......
Otherwise I'm ok and hope all of you are too. Haven't had my cholesterol done for a while Jackie, but last time it was ok. I think they've got me penned in for every six months or something like that.
Sorry to hear about the pains round the operation site Isabelle. The only thing I can think of is possibly scar tissue. I had a similar thing years ago when I first had the breast off and I had all sorts of tests and there was nothing there, they just put it down to that and eventually the pains went away. So fingers crossed, that's all it is.
Hope everyone else is well today. I'm off for a dinner dance tomorrow with my oh and staying overnight. It'll be boring, but it's a chance to dress up and drink a bucket of wine!!!!!
Take care of yourselves everyone and have a happy and painfree weekend. lots of love, Dianne xxxxxxxxxxxxxx
Hi Lovely ladies, Dianne ooh ouch hope the dentist appt went OK never ends does it?
Pargayan thanks for response well( Sorry only just caught up) 6.1 not bad then?Mine is higher but am told the good cholestrol (HDL I think) is on the high side so offsets the bad one? Have been on low fat diet for years and now taking Benecol daily so we shall see.No one has mentioned thyroid or other tests. My Onc not bothered about raised cholestrol Mm
Isabelle glad you are OK ish but there is always another joy isn't there? and sadly how I at least think it is connected with the b****y BC Ladies whatever and where ever you are wishing you well. Love Jackie
Diane, I'm so pleased to hear the good news about your tests, and I hope all goes well at the dentist for you today. I must make an appointment for a check up at mine too.
I was at the doctors for a checkup today and mentioned that I'm getting very sudden, sharp pains where may operation was done, she thinks it may be nerve damage and other pains I'm getting in my ribs around my rads area could be after effects from the treatment, it's always something eh! I suppose if I get no worse i'll do! It just worries you when you get new areas of pain sometimes, a bit worrying if you know what I mean!
Kris, it's nice to have you here, join us on this thread anytime !
I read your comment the other day about shopping in Gibralta, I went in M&S there during my hols, sorry I missed you!!! I hope your hot flushes are subsiding, I get them on Arimidex too.
I'm now waiting to get tests done at my doctors for high cholesterol, i'm hoping it hase'nt got too much worse as it wasn't that good before bc. My last test was 3 years ago and it was 6.1 then, way over what it should have been.
I hope everyone has had a good day today,
Hi Girlies, just a quickie, I'm in the usual tearing hurry, got to go to the Dentist shortly - oh joy!!!
Just to let you know that the latest blood test results were very good. The tumour markers have come down again and the liver and spine mets are stable. The onc was very pleased and I don't see him again until Feb providing all is well in the meantime. So hurrah for Arimidex, it's working for me at the moment. I'll happily put up with the se's for as long as it takes.
Got to dash, hope you are all well today, take care my loves, bye for now, Dianne xxxxxxxxxxxxxxxxxx
Hi Jackie (libby 2010)
Saw the Dr yesterday and he took my blood pressure then went on a website and entered my BP and cholesterol levels and age into it and it does some calculations to advise whether or not statins are going to help you. Luckily I don't need them yet. I am trying to reduce my fat intake as well.
I am also being tested for anemia and an underactive thyroid as apparently the symptoms I have been having can be caused by this.
If all these come back ok I know it is SEs of arimidex.
Like most of us, I am not keen to come off it at this moment in time - oh for a crystal ball!
Take care x
I've been on Arimidex for 6 weeks now and have a the back pain many of you have described - this site is so useful and I was really worried about the pain. But the pain has now subsided at night over the last few days and having talked to my Onc she's said that sometimes this happens - so I hope that some of you with SEs find they subside. My advice is don't worry if you are just starting taking it - wait and see what happens for you. At the moment the aches and creakiness seem worth is having just had the news that my tumours have stabilised - so feel it's not such a problem when the drug is doing its major job. Onc did say that I could be prescribed something else - Tamoxifen - but having researched about that it does seem that the effectiveness of Arimidex is greater so I'm going to persevere with it and I'm only getting occassional flushes that are very bearable. Hope others are coping ok this week. Frances
excuse me poking my nose in , cos I´m not on Arimidex ( femara )but certain things are very similar .
One of the breast cancer nurses here at BCC reccommended me to try "gabapentin" for my hot flushes which were definately pretty unbearable and making my life sheer hell .
This I did , and eventually I was put on 300mg ,3 times a day .I have found the SE bearable , mainly tiredness , a few other things that i refuse to acknowledge .
It has worked for me very well , reducing the number of flushes and also the intensity of them , so that despite still being approx every two hours ( as opposed to every hour .) it is acceptable , knowing that the alternative would be to give up on the femara .This week , after seeing my onc last week , I am begining to try 400 mg three times a day . So far I´ve only upped the late evening dose , no ill effects so far , so next week i will increase the midday dose .It´s well worth thinking about for those of you who suffer badly .
Jackie , my friend , who completed her 5 years last summer was on Arimidex , and acouple of times in the last year ,2009 , she was given a different one , it came in a totally different box . I take femara , but here in Spain , I get it under the name "letrozole " and it comes from one of two laboratories , one in a green pack from France and another in a pink box from a lab in Spain , so already here we have alternative to The actual brand "Femara ".
Have you tried ginger for your nausea ? Biscuits or tea , or perhaps a small piece of real ginger . Your last christmas must have ben the same as mine , dx mid november and op 1st december with no results or plan ....scary !!
Thank you ladies , I will now s** off back to where I belong !
Hi Girls, hope you are all well today. Jackie, I'll be wearing my boots tonight! We're going out at wine-o-clock!
That's very interesting Pargayan, it would be good if someone else manufactured them so that we have a shot at getting rid of these crappy side effects. If you hear of anything happening withe other companies, please let us know.
Not much else to tell you really, am looking forward to the weekend as usual. Hope you all have a really good one and it's painfree.
Lots of love, Dianne xxxxxxxxxxxxxxxxx
Hi all. Get you with the kinky boots Dianne they sound very glam.
Pargayan I was interested in what you had to say as I was recommended hypermellose eye drops at one point whilst I was on chemo. Also last week as I was starting to struggle with the constant nausea it was suggested to me by a nurse on the BCC help line that I try changing the brand of Arimidex. Went to 2 different pharmacists and they assured me that only Astra Zeneca make it at present although one did say he thought it would not be long before it came off licence but did not know how long.Am trying to keep busy now so as to distract myself from the nausea and that seems to help too.But I feel perhaps I should not complain as the other side effects sound worse if anything.Why on earth is there a whitening agent in them?Oh please don't remind me that Christmas is so close. At least this year hopefully I will be able to enjoy it more. Last year I had been dx about 4 weeks earlier and a treatment plan was not fully in place. Love to all Jackie
Evening everyone - I was just browsing through some of the other topics and came across the one called Allergy to E464 in brands of Tamoxifen.
As I read it I became curious as some of the side effects such as flying off the handle, aching joints, etc also seemed to apply to Arimidex, so I went and got my leaflet and lo and behold, arimidex also contains a chemical called hypomellose which it would seem is also known as E464.
Not sure what can be done about it at this moment in time but I believe that Arimidex can now be made by other companies (or is approaching that time). If this is correct it may be worth checking to see if there is one out there that does not contain this chemical as most of us will be on it for several more years to come. It would appear it is used as a bulking agent.
Another thing that always amazes/amuses me is the fact that we are being treated for cancer yet our tablets contain a whitening agent called titanium dioxide that reportedly causes cancer - ironic really isn't it!
To leave on a high note - only one more workday till the weekend and as hubbie says - 2 and a bit months to christmas - help where's the brandy!
Hi Everyone, hope all is well today with all of you. I'm feeling ok apart from the usual aching joints which I can put up with and luckily I don't feel particularly nauseous. I get it occasionally, but I ignore it and it gives up and goes away!!! Pity the rest of it doesn't go with it.....
Not much else to say really, it's a beautiful day although freezing cold and I've been out shopping and bought a pair of very long black patent leather boots. I'll be slapping my thigh when I wear them cos' I'll look like bloody Dick Whittington, but who cares, I like them.
Take care of yourselves everyone, lots of love, Dianne x x x
Hi everyone. I didn't know about the cholesterol problems. I will ask my onc but I don't see her until January now. Off to have my dexa bone scan on Thursday. Still have stiff joints if I stay still too long but it doesn't seem to be getting any worse or perhaps the pilates is having a good effect. Love to all. x
Hi all Dianne not taking an AI is not an option for me either but in my case I am ER 100% +ve and Pr100% +ve, so feel it is really required for me.I feel constantly nauseaous but I don't ache so a least that is good. Mattsmam can't help with the tattoo removal thing either mine is like a faint pencil dot down in the cleavage area and the other 2 are on my sides.Can you try for referral elsewhere. Seems rotten that you are expected to live with this.Hope you are all OK Love Jackie
Will definitely let you know what the doctor says.
I do know that one option is to change to Tamoxifen, but if I can I would prefer to stay in Arimidex due to my circumstances, plus it seems tamoxifen has its own problems and SEs. I am not seeing the ONC (who I have never met as I saw one of her staff) until July 2011, but due to see the surgeon in December and presume my Dr will liaise with them all.
Love to all xx
Jodie1, Thank you for your nice words. I think I went on the wrong section. What a beautiful baby. Hope things go well for you.
Love Anne X
PS. My neck and shoulders ache with Arimadex and feel a little sick sometimes,now on week 7 but so far not too bad.
Hi Girls, hope you are well today and had a good weekend. I knew about the possibility of the raised cholesterol before I started taking the Arimidex. I haven't as yet had a test for it, but not taking the tablet is not an option for me anyway because of the liver mets.
mattsmam, I'm sorry I don't know anything about tatto removal after rads. It's years since I had rads and then they just painted the marks on at the beginning of the rads and whatever it was that they used just stayed on until the end of the treatment and then gradually faded away. I don't know why they don't still use that, it seems bloody stupid to me to be putting tattoos on women who are already stressed out by the rest of the crap that we have to put up with. I'm so sorry for your predicament and I really hope you can get it sorted out one way or another.
Take good care of yourselves everyone, lots of love to you all. Dianne x x x
Hello all. I wonder if anyone has had experience of having tatto removed after radiotherapy. Mine has bled under the skin on my chest and its quite noticeable. Others are ok but when asking my GP to refere me was told that they will not be able to get this funded. Not too happy with the situation. I had my treatment under my private health cover,mastectomy, LD reconstuction then radiotherapy at my local national health hospital, although still as a private patient, who were fab. Health company will not fund laser treatment and looks like a brick wall with GP. Can anone tell me if they have had this problem. I know to some it may seem minor but its quite high up on my chest and I want it removed. Sorry to rattle on.
Look forward to you help X
I've been on Arimidex for 14 weeks ow as well as my Cytalopram for 11 weeks.
In the weeks sice finishing my rads I have lost 1 stone in weight and overall since dx at the end of April I have lost over one and a half stone. My doctor thinks my present weight loss may be due to se's of the tablets. At present I don't mind loseing some weight as I was a bit overweight but the doctor now wants to keep an eye on the se's.
It would be much nicer to lose weight because we wanted to in a normal way instead of through all the complications of bc!
My cholesterol levels were too high before bc but the doctor has'nt teseted them recently.
I hope everyone is ok today,
I've been on arimidex for 18 months, I have the usual aches nd pain and a fewer hot flushes since taking them at night now. PLus nearly 2 stone weight gain since taking them.
I didn't know anything about it causing cholesteral, as i've never had mine checked, a bit worried now to know if I should get it checked out with the dr or leave well alone.
Pargayan please share what your doc thinks when you see him if you would like to. I would be interested. Thanks Jackie
Many thanks Libby2010, I must admit that I had missed the cholesterol risk when I was looking at the side effects. Not sure what my doctor will advise, do not see him till begining of November as he is away for a week.
Hi Pargayan I was particularly concerned about the S/e of raised cholestrol with Arimidex and mentioned it to my Onc back in July when he put me on it. He sort of brushed it off but I already had a slightly raised level and a very high family history of it too. I was already having my levels checked 6 monthly and am also on a low fat diet for a long time. Am not considered to be at statins level yet ( although that varies on who I speak too)Not sure how much this helps but it is something I found out for myself prior to taking Arimidex. I really do not know what the answer is.Have a lovely trip to the fiords. Jackie
Hi everyone, read often but do not post very often. Had my MX July 09 and have been on the lovely little white pill known as arimidex since sept 09. Have the normal aches and pains, depression and flushes etc, but paid a visit to the doctors re breathlessness and the odd chest pain. Upshot was blood tests and a visit to the hospital for a heart treadmill test. Luckily all ok on the treadmill but my cholesterol is high. I wondered if anyone else had the side effect of raised cholesterol and what did you do to get it down.
On a happpier note, we are also considering a trip to the fjords next year and have looked at Hurtigurten (sorry I forgot to make a note of who it was who mentioned it), what ship were you thinking of going on. We did the Baltics earlier this year and I can well recommend it.
I also take glucosamine chrondroitin and MSM for the aches. x
Hi Everyone, Isabelle, lovely to see you, hope you had a marvellous time on the cruise.
Kris, I've got antibiotics for the abscess which I start today. I could have started them last week but we had a big celebration at the weekend for our 25th wedding anniversary and I knew I'd be having wine etc. So thats it for now, no more wine for a week!!
Anyway, hope you are all well today, take care of yourselves, lots of love, Dianne xxxxxxxxxxxxx
I'm back from my hols, had a loverly time. My se's aren't too bad at present due to the fact that I'm also taking anti-depresants which seem to be masking the se's of the Arimidex, I did get pain in my hands, legs and feet when I first started taking the Arimidex and now my hot flushes have returned quite strongly in the last few weeks.
It's loverly to hear from new ladies who have recently joined our thread. I hope everyone is doing ok at present.
I will have to catch up with all the news since I've been away.
I hope everyone has had a good weekend, thinking of you all.
I suffer from lymphodema after having my lymph nodes out, I was fine after my operation and have always kept my arm mobile (which you must do) from the start. I got an infection through a cut whilst swimming abroad and got cellulitus (which is an infection) treated with antibiotics, this started my lymphodema off. It does swell and you can be referred to a lymphodema nurse and she will massage the lmyph glands and measure your arm and fit you with a elastic sleeve.
But there are many people who have had lymph nodes removed and never had a problem. So don't worry, it does not affect me too much on a day to day basis and my arm is very mobile.
Hope this is of help xxSarnie
Hi ladies one s/e I have pinned on Arimidex is persistent nausea. Anyone else had this? I am seeing my Onc on Tues and hesitate to tell him as I do not ache ( so why am I whinging)and do not want to change to something that might make me ache.Although if he suggested that it would be up for discussion. Think I could cope better with the nausea. Jackie
Like so many of you I´ve been taking glucosamine 1000mg for about 4 years , I also take cod liver oil tablets 1000mg for even longer , I´m sure they have helped . I do get aches in my hands , feet and knees , but I think without these they would be worse , I buy mine from healthy Direct . My dog takes them as well , the same ones as I take as it´s so much cheaper than the vet version and my vet approved of it , he also takes MSM and Marine Chrondrontin , made a huge difference to him , ( he had elbow displacia as a puppy .)
I did tell my onc , but he could´nt have cared less .
Good luck with the dentist jodie , definately sounds like an abcess , I envisage yet more pills for you if it is , anti biotics .
Jump up and down and tell us if you rattle !
I have found that the pilates classes have helped a lot . Unfortunately , it´s not helping with the weight .
Hi I'm new to the site. Have been on Arimidex for a couple of years now and haven't noticed many side effects - although I have had knee and hip pain and occasional hot flushes, and don't sleep very well. Interestingly now I've read all the comments I'm beginning to realise they might all be due to Arimidex. I have to say the bone pains have improved although getting up from the chair I always feel about 80 - I'm only 61! The hot flushes have come back at night over the past couple of months and I have had horrid soreness and itching down below. Have just seen the doc and he says it's lack of oestrogen but, because of the cancer he cannot provide me with oestrogen cream - instead I have something called Sylk which is a natural lubricant. Hope it is going to work. I also have lymphodema - had it from about Month 4 of the chemo. Interestingly it is getting less as the time goes on - I do wear a compression sleeve but hope that over time it might disappear - my breast surgeon thinks that may well happen. Avril if you need any support with lymphodema ask you GP about the lymphodema service - every health authority has to provide one. Don't get too depressed - chances are it may disappear.
Hi Avril can't really help you with the lymphoedema thing. Have I understood correctly that you have not yet had surgery? All I can say is do the exercises and keep doing them, would expect that you would have a physio visit you on the ward before surgery to go through these with you.Also m1yu gives a link look at this too. Very best wishes and good luck to you do keep posting as there is a wealth of info and support on here Jackie
Sounds like your swollen arm is similar to mine. It could lead to lymphodema, which don't really have a "cure" (hope that haven't scared you!). There're lots of things you (we) can do to lessen the symptoms - exercise, massage, etc...
Do you have a breast care nurse? She should give you a bit more info.
You should have been warned about this and told to do the exercise!
Please have a look at this:
Take care xx
Hi Avril, Welcome to the site, but sorry you've had to join us. I think what you're referring to is Lymphodeama (spelling???). I can't help with it really as I never had it but there are lots of ladies on here who have and I think it's a temporary condition which is managed with pain killers etc. Your arm swells up I think. You may not get it at all though with a bit of luck. I'll keep my fingers crossed for you.
Please write anytime you like, there will always be someone who will help and support you.
Lots of love, Dianne x x x
sorry if ive come to the wrong place cos im finding this site difficult to use and cant find the right way to poast a question..wen i have my mastectomy the lymph nodes are being took away..been told my arm may swell up..dose anyone know if this is a tempory thing or is this a perminent thing??? sorry bout the spelling
Petal I had been taking Glucosamine for ages before BC and my BCN knew this. Have another question for my Onc at my appt nect Tues.Had always felt that it was glucosamine that was between me and aching cannot stop taking it without good reason. I have just read the Arimidex leaflet again and cannot see any comment about this?Jackie
Hi Petal, My onc said it was fine to take it and I know there are loads of women who have it and I've never heard of any other oncs telling them not to take it. I suppose it's just a matter of personal choice, but I researched it before I started taking it and I couldn't find any evidence of it interfering with the tabs. A lot of Docs don't like alternative therapy stuff, so who knows.
Anyway, whatever you decide, good luck with it. I also take my Arimidex at night and find that helps too.
Take care, hope you and everyone else is well today.
Lotsa love, Dianne x x x
Hi. Just back from my appointment with the oncologist and she has said not to take glucosamine. She said there is no definite evidence either way but it may interfere with the arimidex so better not risk it! Is she just being over cautious? What have your oncs said?
I take Arimidex at night and suffer from pain due to fibromyalgia, but I think the Arimidex has made my situation worse and my knees are very painful.
Hi Petal, I also have the stiff knee joints with the Arimidex. It's after I've been sitting for a while, so I know exactly what you mean. Once I get them moving I'm ok. Your poor dog, no wonder you feel guilty, I would too. I took my little one to the kennels this weekend and I almost brought her home again, but the lady kept her in the house the whole weekend instead of putting her in the kennel, so that put my mind at ease! I definitely think the Glucosamine helps. I take it mixed with Chondroitin and MSM. I get them from Holland and Barrett but someone did say you can get them on prescription. The only thing with that is that I find they always give the cheapest version of everything and I want the strongest. I take three a day and I noticed a distinct improvement just after a few days.
Well got to dash to get ready for the dentist. I'm also meeting one of the lovely ladies from this site who also lives in Lincolnshire, so that's something to look forward too. Take care of yourself, hope everyone else is well today. Lots of love, Dianne x x x
Hi everyone. I take my tablet at night as well. I've noticed in the last couple of weeks my knee joints have been getting stiffer. They are fine once I get them going. May have to try the glucosamine as it certainly works for my dog. He has been taking them for three years now and when he went into kennels last week I forgot to take them along. Thought he would be ok because it was only for four days but he is definitely stiffer in his rear legs this week so I'm feeling really guilty. Won't be taking his tablets though as they are doggy flavoured!
Hi Everyone, Welcome Sarah, Sandripples, Sunset and Tricia, Enjoy the cruise Tricia, ours was fab.
The Arimidex is best taken at night, it definitely reduces the se's. I also take Glucosamine for the stiffness which also helps a lot. I had a runny tummy when I first started taking them, but at the time I was on a tablet for indigestion which could also cause a runny tummy. I didn't really need that one anymore, so I knocked it on the head and I've had no more problems with running to the loo.
Hope you've all had a good weekend, we've been away and had a fab time. Dentist tomorrow (my 25th wedding anniversary)......
Never mind, it'll pass like everything else. Take good care of yourselves ladies, talk soon, lotsa love, Dianne x x x