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any encouraging experiences about arimidex please

14 REPLIES 14
Guest user
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Re: any encouraging experiences about arimidex please

Hi everyone

Thanks so much for all your helpful posts - feeling very down today. Put it down to trying to feel cheerful 'cause it's christmas when all I can really think about is my hosp. appoint in Jan. At least I will be able to discuss treatment knowing how folk already taking Arimidex are responding. How do other folk make important treatment decisions when their health experts give conflicting opinions? I find it all very hard to deal with and my mind 'goes round in circles' trying to be logical about it all - in fact since bc and all the problems that have followed I have gone from being a fairly confident person to someone who totally feels lacking in confidence and my ability to think clearly.Sometimes I feel that my whole persona was taken along with my breast.The biggest example being that I have allowed my bcn to fill me with doubts and fears about any decision I may make.Sorry to ramble but this is the only place I can express my fears at the moment.

Love to all you wonderful folk
Seren xx

olivia07
Member

Re: any encouraging experiences about arimidex please

Hi Serendipity - I have been on Arimidex for 9 months. I have kept an Arimidex diary and it is interesting to see that the main side effect for me has been hot flushes but not nearly as bad as when I was on Tamoxifen 17 years ago when I had BC for the first time. I take my tablet at night. I do get a few muscle aches but put them down to overdoing it at yoga and the gym. I really think that exercise helps and lifting weights is great for your bones. I am 69 and have been on a statin for 5 years and the level has not risen in 9 months. I definitely have a family history of high cholesterol. Have not had any side effects at all. I do find that alcohol and Arimidex do not mix very well and am feeling a bit rough today! Happy New Year and Good Luck.

JosieR
Member

Re: any encouraging experiences about arimidex please

Hi Serendipity

I have been taking Arimidex for just over a year now. I have suffered with stiff joints on getting out of bed but nothing too major. I would just say that my cholesterol level has risen from 4.5 (pre-Arimidex) to 6.2. Increased lipids in the blood is a listed side effect of Arimidex, so it may be worth getting your levels checked prior to taking it. I am trying to bring my cholesterol down by "tweaking" my already healthy diet even more but it's difficult and my GP has mentioned that I may need to take a Statin to bring it down to an acceptable level - bit reluctant though as I don't really want any more side effects!!

Hope this is helpful.

Jo

Guest user
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Re: any encouraging experiences about arimidex please

Hi Serendipity
I'm pretty much a newcomer on Arimidex (6 weeks so far) but I can say that it's so far so good. I've had one or two minor hot flushes and my knees have been a bitr stiff until I get moving. However it doesn't stop me gardening or getting about. A real breeze after 6 months of taxotere. I hope you'll find it as easy to live with as I have - and as many of the others posting on this site.

Guest user
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Re: any encouraging experiences about arimidex please

Hi Serendipity...
I have been on Arimidex since Feb 2004, just after I finished FEC chemo and rads. I had been on tamoxifen for a couple of months, but my Onc changed me from tamoxifen without any discussion. I had already researched Arimidex and felt it was the best option for me and was going to mention it, but he forestalled me. Thank you Dr. T.

I do have similar joint problems to other posters - takes a little while to get going after sitting down or getting out of bed, but no drugs are without side effects. It is quite tolerable, and I am so grateful my Onc prescribed it when he did, as my prognosis was not too brilliant, with both IDC and DCIS, and lymph spread.

Having Crohn's and been on steroids for some 30 yrs, my Gastro had me do a DEXA bone density scan earlier this year - and the results were alarming. He obviously knows I take Arimidex and it does not protect the bones as Tamoxifen does, and so ordered the test. I now have osteopenia, a precursor to osteoporisis, and am on a weekly bishopshophonate, Alendronic Acid, plus Calcichew/Vit.D twice daily. The pains, particularly in my left hip have diminished significantly, and I am sleeping much better.

My left hip pain was so bad I went to my GP - bad decision - he sent me off for an x-ray, all "normal", then 3 months of weekly physio. A waste of time for me and the physio. When I next saw my bc surgeon for annual review I mentioned my hip pain and 2 days later had a nuclear bone scan (not a DEXA bone density one) and it showed arthritis. Hence the Alendronic Acid tablets, which have been wonderful, although a pain to take as you can't have a cup of tea or orange juice on rising, for a half hour, only water. A small price to pay for continuing good health.

As for your bc nurse, until she walks in our footsteps, I think she would do better to keep her opinions to herself, or get properly educated.

I have had two fractures in both feet recently, obviously due to my bone problems, but grateful that the bisphosphonate is keeping the osteopenia in check, and not had a hip fracture yet. I spent a month in a wheelchair and on crutches for the metatarsal fracture in my left foot -no, I wasn't playing football! - I only stood up from the dining table at 10 am to go and have a shower, and my left leg just gave way and I fell on the floor. If it had been 10 pm I could have understood being a little unsteady on my feet!

I don't, to my knowledge, have any heart problems, and I was never asked about them when the Onc prescribed Arimidex. For me it has been a great drug - almost 5 yrs now since dx and no sign of recurrence. Go for it!

Take care,
Liz.

Lucy_BCC
Member

Re: any encouraging experiences about arimidex please

No problem Marie I will delete them for you

Katie

Guest user
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Re: any encouraging experiences about arimidex please

Sorry! Somehow repeated message three times!

Guest user
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Re: any encouraging experiences about arimidex please

Hi Serendipity,
I've been taking Arimidex for two years now and I did have aching joints, especially when getting out of bed or getting out of the car after a long journey, but it was bearable and I found that if I could walk and /or swim it helped. Now things are much better and for the past three months or so, I've hardly had any pain, which I'm really pleased about. So things can improve. I do take calcium with vitamin D every day (told to by onc) and I have a bone density test every year. Had one before beginning Arimidex so could assess the effect on bones and although there has been some loss of density, it has been minimal but it's something I want to keep an eye on. Do have hot flushes, but overall, my experience has been positive.I agree that you should listen to your onc rather than negative comments from others. Hope this helps and gives you a bit more information.
Marie

Guest user
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Re: any encouraging experiences about arimidex please

Hi Everyone

It is so reassuring to read your posts and gives me hope that I may be able to have a meaningful dialogue about arimidex in Jan. It is extremely difficult to get the information from my bcn - her personnal opinions have arisen in my previous 2 conversations about this and made me feel even lower as they were so negative - and as my G.P. told me last week, I need to ignore those because only someone in my shoes is qualified to give an opinion and I should only listen to the medical facts presented by the doctors. That's why I value the comments I have received from you kind folk as you are taking this drug and are able to be honest about it's effects in an unbiased way.
Sharon, I don't know what level I am - I do know that I want the chance to take Arimidex if it is suitable, as I want to continue to be in remission especially for my teenage son. By the way, I'm an active dog owner (2 rough collies) and walk them every day in spite of FMS and Cardiac problems and I think that's what keeps me going - in every respect- used to do dog agility until bc diagnosis and subsequent mobility problems. I also work as a PAT volunteer.
Suzy, Phoebe and Dilys, it helps to know you too have faith in arimidex and and understand how hard it is to have a bcn who is so busy that you feel a nuisance asking for help.
Love to you all
Seren xx

Guest user
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Re: any encouraging experiences about arimidex please

Hi Serendipity

I have been taking Arimidex for nearly a month now. I am 55. It could be early days but I have had no side effects at all. Everything I have read about it suggests that it is an excellent drug.

Sorry to hear you have somany worries and problems at the moment.

Take care

Dilys

Louise_BCC
Member

Re: any encouraging experiences about arimidex please

Hi Serendipity

You may have already read this factsheet, but just in case, here is the link to the Arimidex information which you may find helpful to read.

http://www.breastcancercare.org.uk/docs/arimidex_dec06_0.pdf

Also, I know you are feeling low at the moment, and other users are already offering support and advice which I know will be of help to you, but you may also like to call the helpline (number below) or be interested in Breast Cancer Care's other services such as the telephone support group and peer support, here are the details:

The aim of the telephone support group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
For more information telephone (helpline) 0808 800 6000 or email .

Peer Support puts you in touch with someone who has personal experience of breast cancer or benign breast conditions and has been trained to listen and offer emotional support. We do our best to match you with someone who has experienced the issues that are most important to you, you will find the link below.

http://www.breastcancercare.org.uk/content.php?page_id=4438

I hope this is of some help to you.

Kind regards

Louise

Facilitator
Breast Cancer Care

ForumMember
Member

Re: any encouraging experiences about arimidex please

Hi Serendipity

I can imagine you must be desperate to know our experiences of Arimidex and you will know from my previous postings to start with i had terrible problems. When i started taking it i was also recovering from septicaemia which nearly ended my life. This i am sure had an effect on my first taking it, Now 5 months on from starting Arimidex my life is really good, yes i used to have terrible sweats and flushes but with chlonidine and other treatments which you can ask for, they are really now in all honesty just a passing nuisance, they have not stopped me from going out to work in a shop which i love. A lot of people have had bad joint pains, i hate to speak too soon but i have been spared this so far (never say never but not at the moment) I do take calcium and glusomine which must help. I believe that Arimidex is a fantastic drug, i researched it prior to taking it, and would advise anyone whose doctor thinks it will help to at least give it a try. I have met several ladies on Tamoxifen, which i was told had dreadful side effects, not one of these ladies has any side effects at all! I think it depends on the individual and we are all different so what suits one person will not suit another. I would love you to try Arimidex as i have great faith in it.

So sorry your Breast nurse not helpful, mine is about 70 and charges around the unit like a geriatric headless chicken not even remembering her patients name. I do therefore sympathise with you. Sorry you also have multiple health problems, i do feel for you, everything seems to come at once sometimes and i can well believe you feel overwhelmed by it all. I do hope i have helped in some small way and wish you all the very best.

Suzy

Guest user
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Re: any encouraging experiences about arimidex please

Hi Serendipity

I am now 63 and was dx in February, double mastectomy in March, chemotherapy and radiotherapy. Have also other problems, artificial knees that are not good, bladder problems, back and joint problems. I was dreading going on to Arimidex as I had read so many reports about it causing joint problems, etc, etc and I felt that I had enough of those without additional ones! I have now been on Arimidex for about three and a half months and apart from about 15 seconds mobility problems getting out of bed or the car or a chair (and I really do mean about 15 seconds - just until I get going) I have had NO OTHER problems at all. To be honest I don't know if these problems are down to Arimidex or whether it's my joints anyway! I train my dog for Working Trials (like Police Dog Trials) twice a week and am out in the fields almost all day. I have found that I don't care too much any more whether the housework has been done any more - so that's a good side effect! My oncologist told me that my cancer was hormone receptive level eight on a scale of one to eight which was ideal for Arimidex. Do you know what level you are at? I have not had a bone density scan yet but I am so pleased that the side effects I was dreading have not materialised. I am not exhausted. I don't know whether this has helped you and even if it's early days for me, I feel sure that if you have a positive approach that will probably help you too. Good luck in your decision and a very Merry Christmas and Happy New Year.

Sharon

Guest user
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Re: any encouraging experiences about arimidex please

I had arimidex for 18 months and had no side effects. Sadly I had a flare and had to stop for chemo.

Guest user
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any encouraging experiences about arimidex please

I desperately need to hear from folk who are taking Arimidex and have positive experiences - I am aware of effects such as joint and muscle problems etc. I feel terribly low at the moment, as I am facing decisions in early Jan regarding Arimidex when I have to see my consultant to discuss starting it, after initially being dissuaded by breast consultant, due to my cardiac problems. My cardiologist has said this week, he would be happy for me to take it and I need as much information as I can get before this appoint. at breast unit. Can't take tamoxifen due to previous pulmonary embolism and have had no hormone therapy since mastectomy 2yrs.ago. All of this is adding to my already low mood as I am having to deal with multiple serious health problems in addition to bc. If there is anyone who can offer me help I would be so grateful as I feel overwhelmed at the moment and my bcn is not helpful and I have no-one to turn to.
Seren