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Arimidex - R U normal after the 5 years?

56 REPLIES 56
MarciaB
Member

Re: Arimidex - R U normal after the 5 years?

I am 66 years old and have been on Anastrozole for 5 years. I was also told that I should stay on them for 10 years. A few months ago I developed pain in my right thumb and TMJ in my left jaw. My arthritis escalated after chemo. I also have neuropathy in my feet that is unbearable. The fear of cancer recurring makes the decision to get off these pills difficult. The comment about chemicals in your system causing more problems really makes sense. I sure hope I get the strength to quit these pills because I’m convinced that they are causing my health issues now. Good luck to you all that have survived breast cancer and have to live with taking AIs. 

Marlena
Member

Re: Arimidex - R U normal after the 5 years?

I had breast cancer in my left breast a little over

5 years ago. I had a lumpectomy & since the cancer, was small I 

chose radiation . 

So I took my Last anastrozole 1 month ago & wanted to find out , withdrawal symptoms. Well couldn't find any . I've been looking everywhere & still nothing! 

So here's mine & they only make sense , since estrogens, back.

Hot Flashes life there's no tomorrow!

Hungry All the time ! Mood changes!

That's it but  I'm Afraid that because my body is now producing estrogens, my cancer will return . 

Anyone have any idea about this? 

 

 

 

 

bortiz
Member

Re: Arimidex - R U normal after the 5 years?

I was told by my new oncologist that the latest recomendation is 5 yrs. Just as I hadaccepted I would be taking it the rest of my life.
I have rheumatoid arthritis so I just thought any pain in my bones was due to that once the chemo was over.
It's hot here almost all the time so if I had night sweats, I just lived with it.
The studies cited before the new recommendation showed that the longer patients took it the longer they were cancer free. I thought, of course, the ones who did not make it did not count after 10 or 15 yrs. But it will be hard to accept that I won't be taking it in a few months. As I understand it, it stopped my cancer and shrank my masses as well as kept it from coming back.
I took Arimidex the first year and then the generic version.
AnitaA
Member

Re: Arimidex - R U normal after the 5 years?

Approx April 2013 I started on Tomaxifin, side affect symptoms came on throughout approx 8 mo's to the point I couldn't get out of a chair without steadying myself the pain was so bad.  So my onc switched me to Aramidex.  Within days I was worse and then the emotional side affects started.  Unexpected crying, feeling worthless, NO sex drive, and weird thoughts towards "not being here".  Then they told me that instead of 5 yrs it would be 10...  I was overwhelmed by the prospect of "living" that way.  Being scared to stop taking but having no alternative through KP protocal.  I finally just weaned myself off approx 3 yrs ago.

 

I see a maximixed living chiropractor and have felt like me again all this time!

 

My brain hasn't fully recovered - my memory is still a big issue, but I got my life back.

 

I believe the chemicals we ingest through our skin, eating and environment is feeding cancer.  All but I of 10 friends have passed, most had chemo.  Maybe for some, Tomaxifin and Aramidex, are what are needed.  I believe it is just another chemical for me that my body has rejected.  

 

Let's hope we don't see a commercial for an attorney to call....

 

 

 

 

Kafers51
Member

Re: Arimidex - R U normal after the 5 years?

I am 67 years old I had a lumpectomy in June 2012 some lymph nodes removed stage 2 I have been on armidex for 6 years now. Joint pain fatigue lack of sex drive hot flashes although not as bad as they where with menopause but I took the meds because I didn’t want the cancer to return so if this helped ok I was looking forward to the fact that they said 5 years well when I got close to the 5 year mark I was told by Onc they have decided that it is best to stay on it for 10 years Needless to say I was very disappointed but what can you do. So I am plugging along and I’m hoping by the 10 year mark they font changed the timeline again. Joint pain is bad at times I have arthritis issues anyway this has not helped also no interest in sex at all . Just none I could care less. Just wanted to mention this Thank you for letting me vent
Felina
Member

Re: Arimidex - R U normal after the 5 years?

Hello Christiane, I wrote last evening but don't see the post, so i'm trying again. I took Arimidex 9 years ago and still suffer from side effects. They start randomly. I am suggesting to visit "ask a patient" under Arimidex you will find what others are saying. I have had a revisit of side effects going on 17 months now. Have been to many Dr.s and they don't believe or listen to me when i try and tell (any of them) much like 9 years ago when they tried to tell me it was not Arimidex, and it's hard to descibe to anyone the traveling pain or what's happening and Iam suffering terrible. Again visit the site "ask a patient". I recommend this to every lady that has or is taking "Arimidex"

Felina
Member

Re: Arimidex - R U normal after the 5 years?

I would like to hear from anyone who is this far from taking Arimidex and still experience side affects when ever they decide to reappear. (off Arimidex 9yrs)

Felina
Member

Re: Arimidex - R U normal after the 5 years?

I am replying to username "christiane" 

I took Arimidex 9years ago and the side effects are still reacuring. I have posted on "ask a patient" under Arimidex twice, once 9 years ago (oct 2011) and again july 2018. I suggest that you visit this sight and see what is being said by "breast cancer" patients who are telling first hand what they are experiencing 

joann7230
Member

Re: Arimidex - R U normal after the 5 years?

I have been on aridemex for almost 5 years and I am also concerned about stopping suddenly.

I am also worried that 5 years is not long enough.

What are the current thoughts on this???

 

BlueShani
Member

Re: Arimidex - R U normal after the 5 years?

After five years on Arimdex are you protected for twenty years after. A navigator infor me and can you stop taking it suddenly?

Dianaroe
Member

Re: Arimidex - R U normal after the 5 years?

Has any one developed heart palpation and anxiety while taking Arimidex . Been o. 2 yrs and have Developed both
Tez
Member

Re: Arimidex - R U normal after the 5 years?

Just to say thank you .... Your post has inspired me and the supplements info is great.... I'm 3 months in with hormone treatment of Zoladex injections and anastrozole and having major problems/side effects, to the point of wanting to stop treatment and hope for the best. For me it's all about healthy life style and trying to lead a less stressful life, trying get rid of things in your life that are no good .....these things too are major contributors in recovering from BC. Which don't get recognised that often! Thanks again 😌

Spoiler
 
cbonnie03
Member

Re: Arimidex - R U normal after the 5 years?

Hi Terezhall, I am thrilled for you also that you finally stop taking Anastrozole! I have 2 more years to go. I really haven't had a lot of side effects, except headaches, but they could be from my blood pressure meds to. My last cholesterol check was ok. I do take 1000 mgs of Calcium Citrate, about 1700 of Vit. D, and 500 mgs of Magnesium. My brother suggested Vit. K2, but my primary doc at the time was against if because of risk of clots. So I see you are on Vit.K 1..I also take Krill oil. Getting back to the Vit.K 1, I'm assuming your doc said all these were ok to take. I will check out the Vit.K 1, as I know it helps with bone density. I have osteoporosis, the doc wanted me to get the Reclast injection, but I took Fosomax in the late 90's, and that gave me severe stomach problems, and now I still have a very sensitive stomach. I don't like bisphosphanates at all. Reading about them it just doesn't seem to be the right thing for our bones. Reclast is also a bisphosphanate. So that's why I just take Calcium, Vit.D and Magnesium, oh and also Strontium. I go next year for my bone density..hopefully it will either have not changed, or got better! After I had a mastectomy in 2014, my hubby had a major stroke, so I'm busy seeing him every day in the nursing home..he has aphasia and is paralyzed on his right side, but he does get around in a wheelchair. I'm thankful for that and he's in good spirits. I will check out the Vit.K 1 and see what the difference is and ask my doc. Thanks and good luck to you!!!

yankeewoman
Member

Re: Arimidex - R U normal after the 5 years?

The protocol is now 5 years on hormone therapy for ER+ breast cancers because research has shown that with longer estrogen deprivation these cancers can mutate to no longer be ER+ and hormone therapy will no longer control them. This is usually what causes death in women with ER+ metastatic disease.   

Debbie1964
Member

Re: Arimidex - R U normal after the 5 years?

Hi ladies, im taking letrozole along with koladex inplants, maintaining my tumour until op, been on it 3 weeks, not to bad so far, i find side effects come and go, had bad hip pain to start, that cleared after 3 days, then i started taking magnesium as i read that helped with joint pain, now im experiancing pain down legs, all i can describe it as, is the feeling of having a trapped nerve, its very frustrating. Hugs to you all
Carolyn52
Member

Re: Arimidex - R U normal after the 5 years?

Judi
I totally agree ..I'm.on letrozole and was started on "accord" ..minimal side effects then was given "cipra" . Aagh horrendous ..had huge hair loss and blurry eyes and felt like I had an army of ants running inside my body so I now have my repeat prescription marked "accord" .
Yes ..there are side effects but very easy to manage after 20 months .
I'm not sure whether to add this but I will ..letrozole is used as first line treatment for secondary bc too ..which I'm afraid is me but at the moment its keeping things under control so it's a powerful little pill but I love it !!
Xx
ollisj6
Member

Re: Arimidex - R U normal after the 5 years?

hi Anita I am currently on letrozole coming up to my third year I hated it with a passion at first and wanted to flush it down the loo but I changed brands from cipla which was horrendous for me to accord brand and I'm much better on this one yes I still get stiff joints but nothing like before I know we are all different and if one tablet suits one lady it probably won't another I've had a battle with some pharmacists as they disagree and insist they are all the same but I beg to differ as i am tons better on this brand I'm such a scaredy cat and persevering obviously because this medication is hopefully preventing a recurrence good luck on your choice what ever you decide to do love Judi xxx

AnitaA
Member

Re: Arimidex - R U normal after the 5 years?

Hi, I had so many bad side effects from the Aramidex that I got off of it approx 3 months ago.  Most all my side effects except the knee pain and some memory problems have become livable again!  However, my husband is concerned and so I am exploring "alternatives".  One is Letrozole.  Has anyone been on it or know someone?

Thanks!!

Kar-anne
Member

Re: Arimidex - R U normal after the 5 years?

Hi again,

I have another link here, https://www.drugs.com/news/breast-cancer-prevention-beyond-5-years-may-not-raise-survival-63678.html

 

The above link was within this newslink its worth spending the time to read all this stuff arduous i know.  So many conflicting ideas, i think its important to discuss fully with your doctors, each of us has a different circumstance.

 

I have only about 2 weeks left before I've done my 5 years with Arimidex.  At the end of 2015 I was devastated to be told, by my Surgeon - i had to take it for at least 7 years maybe 10.  Then I had discussions with my Radiologist who advised the Oncologist was really in charge but he thought I could maybe get away with stopping at 5 years.  Then to my surprise my Oncologist announced that he was of the opinion I could stop at 5 years if I want, and that the latest view was there wasn't the benefits in taking the drug for longer.  But he did go on to say "in your case"   I have agreed I want to stop.  I only had a small trace of cancer in 1 lymph node, I think a case by case approach is the way they are taking it.  

 

A lot of historical views and reports here. https://www.drugs.com/answers/support-group/arimidex/news/

 

Karanne

Kar-anne
Member

Re: Arimidex - R U normal after the 5 years?

Marlin
Member

Re: Arimidex - R U normal after the 5 years?

Hi can anyone let me know where the written info is on the latest decision to change the 10 years on an aromatase inhibitor back to 5

Marlin
Member

Re: Arimidex - R U normal after the 5 years?

Hi where can I find written info on the use of Arimidex going back to 5 years as I was so upset when they told me 10 years as I was nearly home free so would love to read the recent research
Terezhall
Member

Re: Arimidex - R U normal after the 5 years?

I'm thrilled to find this site! I just took my final pill 3 days ago after 5 years of Anastrozole. I had some side effects, although aging happened in those 5 years as well right? 😳 My LDL is in the high range and I watched that number climb over the 5 years, even though my diet is pretty good, I exercise frequently and am very good about weight bearing exercise, yet I developed Osteopenia in the 5th year. I was through menopause by the time I started the drug, had had a hysterectomy shortly before I started the AN (rough year healthwise 2012) , and never knew from a hot flash until about 2 years in. Some issues with my ankles that have been thorny, and hard to rehab, although with a lot of work they are much better. My doc and I talked about 5 vs. 10 years and I am glad we worked out together that 5. years is enough. The osteopenia and hi LDL threw me. I'm hoping these issues will resolve off the AN and with supplements. I've taken a lot of supplements over the 5 years to help offset the side effects. Vitamin E for hot flashes helped a good deal. I'm taking a liquid "Osteo Density Blend" with calcium, Vitamin D, Magnesium, manganese and vitamin K 1. Osteo Biflex for joints and Omega 3s for heart health. Plus a daily vitamin. I haven't had a sniffle in over two years, which I attribute to these supplements. Oh and that divorce wasn't a bad idea either! BC has helped me wake up and find a more vibrant life path, and despite the side effects, I'm glad I took the drug. Much love and good health to all! Terry
Rneidich
Member

Re: Arimidex - R U normal after the 5 years?

Ask if you can be switched to Aromasin
Kar-anne
Member

Re: Arimidex - R U normal after the 5 years?

Hi Brenda,

I hope things get better for you soon, I don't know if I imagine it or not but i think I definitely felt better during the last half of my 5 years.  My biggest problem is the sweating as i live in the tropics and my body cant seem to recover well once i get over heated which is often.

I only have a few months to go, then i will let you all know if I notice any improvement once I stop.

Cheers Kar-anne

Brenda Renee
Member

Re: Arimidex - R U normal after the 5 years?

I started taking generic Arimidex in Sept., 2015, and immediately began having headaches.  Now I am so stiff and sore all the time and I have pain in my hands all the time.  It does get worse at night.  I HOPE this all goes away once I stop taking the medicine at the end of five years.  

Kar-anne
Member

Re: Arimidex - R U normal after the 5 years?

Hi 

Thanks for sharing Lalizt,

I am in Cairns Australia and saw my onc last night who also told me that I could now stop taking the Arimidex at the 5 year mark, which will be in a few months.  I had a lumpectomy, sentinel node biopsy with one lymph node affected, so had chemo, radiation and now nearing my 5th year of Arimidex.

For all those fearing that they will have nasty side effects from this drug, - you might, - you might not, - but its best to take each day as it comes on your journey of recovery.

I had some joint stiffness and hot flashes, sometimes worse than others.  I still lead a normal life went back to work, saw the birth of 4 new grandchildren, had 3 long overseas trips, married the second daughter off, getting ready for another daughters wedding now and also another grandy due in 7 months time.

I remember how scared I was of maybe not being able to have a full life, but now 5 years down the track I see the beautiful life events that I have been able to be a part of, - just feeling blessed right now, sore joints and hot flashes are annoying, but so is a normal menopause or any other condition that many people have to wrangle.

Just listen to yourself, everyone has a different journey in recovery and move on one step at a time, only concentrate on the now.  The past few years I have rarely thought about having cancer or side effects, my life just is.  My husband has just had a cochlear implant, he is going through the joy of hearing again, it hasnt been easy, we know one thing though it just is.  It is our lot, and thats got to be right.  I wouldn't want someone elses lot.

I wish you all wonderful healing.  You can do it. xxxxxx  Kar-anne

 

bclibrary
Member

Re: Arimidex - R U normal after the 5 years?

Hi Ann and Emma --

 

Thanks foir the replies- Someone on another forum also pointed out that we'll see more complaints of side effects on these forums than postings from women who have had little or no issues with the AI's --probably very true! I'm going to talk to my Oncologist about trying Arimdex (not the generic....)

 

I have to post it on my bedroom ceiling, hallway, bathroom mirror "A DAY at a Time....sometimes moments at a time"  🙂 It makes SUCH a big difference.

 

Hugs to all ~

Barbara

 

 

Optimissy64
Member

Re: Arimidex - TO try it or not.....

Hi bclibrary

Not everyone has side effects as the posters here have mentioned - might be a good idea just to give it a go and see how you get on? I looked at my packet of Anastrozole for ages before biting the bullet, so to speak, and kept looking to see if my head hair had thinnned and whiskers had appeared on my chin........(They haven't !) .Admittedly it is early days for me - only 5 weeks in - so although I have noticed no difference in anything so far, i could expect some of the possible side effects any time soon, but I think it's worth it to stop this nasty disease coming back if at all possible. It's good you've got some time to think about it all. As someone has mentioned, whether here or on another thread, people who post tend to be the ones who have concerns and want advice - people who sail through things are unlikely to post unless to offer reassurance to other people, which I tend to do where I can. Good luck with the rest of your treatment. X

Emma111
Member

Re: Arimidex - R U normal after the 5 years?

Hi Barbara. Just wanted to send a quick message of reassurance. I remember the days before starting anastrazole. .... petrified doesn't even come close. When I read all the side effects, I thought, wow, I've gone through all this and will have no quality of life now.
Anyway, three months in to taking it ..... Nothing bad has happened! Life is good. .. I'm running again, returning to work gradually and my medication doesn't stop me doing anything. I'm 38 so have zoladex implant into my stomach once a month to shut ovaries down and put me into menopause. .... no side effects from that either!
I know others who have no probs either ...Try not to worry ..... you've come so far!!xx
ann-m
Community Champion

Re: Arimidex - R U normal after the 5 years?

Hi Barbara,
Just to point out, that many women are also fine on hormone therapy & tolerate it well.
Understandably, the problems get reported, which can be daunting if you know it is recommended in the treatment plan.
Wishing you the very best in your decision.
ann x

bclibrary
Member

Re: Arimidex - TO try it or not.....

With this chemo brain, I can't recall if I commented about this on this forum or the other....I go back and forth of whether or not to go on Arimidex or the like --I have a few months to decide (just had bi-lateral limpectomies on Monday, ACT chemo last 3 months....) and will have radiation in a month or more. I have heard so many horrific things about the side effects of the AI's, and I have to get back to work this summer or fall!! Yes, as someone repleid to me, there aren't as many peer-reviewed studies on the benefits of nutrition, exercise and reduction of stress for post cancer treatment vs using inhibitors. 

 

Our oncologists are given a certain toolbox that holds drugs and more drugs and they disregard the benefits of nutrition and supplements because they really do not know...How do I weigh my quality of life (59 and holding....) to taking a much higher risk of recurrence of my breast cancer or somewhere else?

 

A few friends have had more success from going on Arimidex but had AWFUL side effects on the generic (forgot the name...) so maybe I will try it and see -- ? I'm going ot talk to a former oncology nurse who is a real advocate for change in diet and a few other additions to battle recurrence. There is BIG money in drugs, especially cancer drugs. I'm not saying that they aren't effective, but trying to pursuade patients to go on these AI's or Tamoxifen for TEN years seems insane to me. But I'm not an oncolgist...! Hopefully the chemo brain will dissipate and I will have a clearer head and make a decision I can live with...

 

DId anyone opt NOT to go on an AI? I think I asked this on another forum....

Barbara

lalizt
Member

Re: Arimidex - R U normal after the 5 years?

Hello,
I am new to the forum, I am a 5 yr survivor Stage 1 IDC. I was on Arimidex for 5 yrs and just took my last pill 2/28/17. Initially my provider asked me to think about taking it for 10 yrs but at my last visit was told that studies show no benefit so was advised to stop med. I have osteopenia, hair thinning and most recently my cholesterol levels had started to rise. I am told this can also be a side effect with Arimidex. I have also been on Effexor to help with hot flashes and now have to be weaned off of this too!! By the way Mayo discharged me from their services after seeing them every 6 mos for the last 5 yrs; my provider said their pt load is getting to big so they were instructed to discharge pts like me who are now considered "low-risk". I was told I can f/ u yearly with my PCP and that this should be a "happy time" for me. Needless to say I am a nervous wreck!!!!
Janecowell
Member

Re: Arimidex - R U normal after the 5 years?

I just had my final visit with the oncologist today. Five years ago when I had my mastectomy and began taking Arimidex, the protocol was 5 years on armimidex. During the past 5 years, it changed to 10. However, today my doc said that at the most recent breast cancer conference, the pendulum had swung back the other way -- they are back to then 5'year plan. Research showed there was no difference in recurrence between the 10 year group and the five year group. Sooo....wooohooooo! I tossed my pills in the trash as soon as I got home. Good luck to you!! I have found Hatha yoga to be a tremendous help, by the way. Also, I am in the US but I assume the 5 yr/10 yr research is good where you are too!


@AnitaA wrote:

I am so excited to have found this!  I have been on Arimdex for 2-1/2 yrs.  When I contacted my dr about all the horrid side effects and what would happen if I got off of it, his answer was the protocol had changed and now it is 10 yrs!!  I started crying.  I asked for alternatives and was told this was the protocal.  A few days later it struck me - MY doctor wasn't MY doctor, he is the health care providers doctor.  It is a business and I as an individual doesn't work in that system.

I have 12 of the listed side effects.  It is so bad that I avoid sex with my husband because of the pain, my knees hurt so bad I walk like I'm 90 if I sit too long (I'm 57) and I don't remember the last time I got 6 hours of sleep.  

Because of this I have decided to explore for 60 days.  

During this time I am doing a detox, vitamin routine and drastic dietary change (grass fed& finished meat) organic veggies, etc.

I figure I want to live with a quality that feels like living and still live a long time.

The cost is there but I plan on saving on my co-pays!  

I will keep you "abreast" of happenings.  I'm so excited it made my humor come back!!


 

AnitaA
Member

Re: Arimidex - R U normal after the 5 years?

I am so excited to have found this!  I have been on Arimdex for 2-1/2 yrs.  When I contacted my dr about all the horrid side effects and what would happen if I got off of it, his answer was the protocol had changed and now it is 10 yrs!!  I started crying.  I asked for alternatives and was told this was the protocal.  A few days later it struck me - MY doctor wasn't MY doctor, he is the health care providers doctor.  It is a business and I as an individual doesn't work in that system.

I have 12 of the listed side effects.  It is so bad that I avoid sex with my husband because of the pain, my knees hurt so bad I walk like I'm 90 if I sit too long (I'm 57) and I don't remember the last time I got 6 hours of sleep.  

Because of this I have decided to explore for 60 days.  

During this time I am doing a detox, vitamin routine and drastic dietary change (grass fed& finished meat) organic veggies, etc.

I figure I want to live with a quality that feels like living and still live a long time.

The cost is there but I plan on saving on my co-pays!  

I will keep you "abreast" of happenings.  I'm so excited it made my humor come back!!

lynnneith
Member

Re: Arimidex - R U normal after the 5 years?

I am finishing up with my radiation treatments. My doctor wants me to take arimidex for 5 years. I hear so many bad things about this drug and the side affects that never go away. Why would I want to create more problems for my self? I am thinking of not taking it. I was a stage 1 breast cancer. Any advice is appreciated. God bless you all.

 

Diane Beamer
Member

Re: Arimidex - R U normal after the 5 years?

I too was told I would only have to take Arimidex for 5 years.  when my hair and eyebrows began to fall out, my doctor had my thyroid tested.  I now take a low dose of Armour thyroid.  This is very common.  To get my hair back, I've been using a supplement that is high in biotin.  It seems to be working.  It also helps my nails.

Good luck to everyone, you're all my heros.

wendyf12
Member

Re: Arimidex - R U normal after the 5 years?

Hi there, bit late coming to the party but I thought I'd let you know that I've been on Anastrazole for 9 years now.  The SE's did ease alot over the years, hair thinning is my only major issue now (only 47 so not liking the thin hair look).  I spoke to a friend recently who is a few months ahead of me on her journey and she said the same.  Some of the effects will no doubt go - but some we will be left with.  I'm just glad to still be here after 9 years :).

 

I read recently that the recommendations coming in from the US is now 15 years on AI's so who knows how long we will need to take them in the end 🙂

clagraffe
Member

Re: Arimidex - R U normal after the 5 years?

I too am experiencing hot sweats, but I am looking forward to no more pain in my joints, end of chin hairs galore, and I hope that my hair thickens back up on the top of my head. I just stopped taking it 9/1.  Please someone tell me about the option of taking it for more than 5 years. Not that I want to. I was under the understanding that we take it for 5 years, it protects us for a minimum of 10 years and that some studies have shown it can be up to as long as 15 years total. Thanks

Suziex
Member

Re: Arimidex - R U normal after the 5 years?

I have just had my last yearly check up today and also told that my consultant will be writing to my doctor to tell her not to prescribe letrozole any more. I don't really know how will cope with not taking this pill it has given me peace of mind for the last five years. I did ask if I could stay on this for longer but he told me he would agree to this. I'm a little confused as all the reports you now read recommend 10 years
I can only think it's because mine was DCIS. I would like to hear your feeling of this. X

rogamil
Member

Re: Arimidex - R U normal after the 5 years?

I'm about halfway through my 5 years. Like most of you, I've had a host of side effects (hand swelling and pain, insomnia, loss of focus, lack of energy, acne, etc.). It's encouraging to know that these will go away once I'm done with the med.

I'm in the US. I can get medical marijuana in my state and it's helped a lot with the insomnia. Hopefully it can help some of you too.
Huskergrandma
Member

Re: Arimidex - R U normal after the 5 years?

I was on arimidex (generic is Anastrozole) for 5 years. I stopped taking this pill about 1 month ago. I realized one day that I did not have the constant aches and pains that had bothered me for 5 years. The first 3 years were the worst. Felt like I had arthritis. Getting up from a chair was torture. The past year it seemed to have improved, but after 5 years was I just getting used to it. Now that I have finished my 5 year regimin my body does not have the aches and pains I had gotten accustomed to. Hooray!

 

There is hope ladies. Hang in there. I'm 61  now but my bones feel better than they did after I took

Anastrozole during the 5 years. 

Susanchristy
Member

Re: Arimidex - R U normal after the 5 years?

Hi, Christiane, I just stopped Arimidex myself a couple weeks ago myself after 5 hears and I had all the side effects exactly you describe. So far I feel a little more energy but still waiting to feel really good again--hard to remember, but know I did. Of course I have to remember I'm now 5 yrs older . . . actually having a little insomnia--hormones probably all crazy even tho I just turned 64. I just read someone else said it takes a few months. I think we'll both return to "normal" in a couple months--let me know if you do--would be so great after feeling so marginal for 5 hears. But we're alive anyway!
ChristineR
Member

Re: Arimidex - R U normal after the 5 years?

I came off Arimidex two weeks ago after being on it for five years. The oncologist said that because I was having such bad side effects that staying on it would not have any benefit. I have had so much pain in both hands and feet that it has affected my life. I am now hoping that the side effects will improve and have already noticed that I'm not as tired and don't have palpitations anymore. I have been told that it will take about three months for the pains to go and if not I may have to see a rheumatologist. I am grateful to the NHS that my cancer has gone (I had a mastectomy, reconstruction with implant followed by chemo then Arimidex). I will let you know if things improve.

Hopefully everyone who has finished their treatment will stay fit and healthy.

best wishes to you all.

Chris

ollisj6
Member

Re: Arimidex - R U normal after the 5 years?

Hi I'm on letrozole been on it for a year at first it seemed ok but then I started having awful pain and stiffness in my shoulders it is dreadful in a morning I still maintain it is the brand I am on which is cipla going to my GPS next week to see what she can suggest I think the other inhibitors are similar in respect of joint pain the oncologist has suggested tamoxifen but I'm not too keen and as you say five years is a long-time and I don't not want to take one as my cancer was hormone positive bit of a dilemma love judi 

BikinGail
Member

Re: Arimidex - R U normal after the 5 years?

I am in agony with Arimidex. Can't sleep, in pain and my fingers are stiff, hips are sore and my shoulders are in agony. I have three more years of this, ugh.
Guest user
Not applicable

Re: Arimidex - R U normal after the 5 years?

I came off Arimidex December 2012 after 5 years. I was one of the more fortunate of us as I had few side effects apart from fingers locking on occasion and the onset of osteopenia. I have not noticed any major changes since coming off the drug, though my fingers don't lock now and I can grip better. On a positive note I am enjoying all life offers and the cancer and hormone therapy have not held me back. Thankfully I am just as normal now as I was 6 years ago, mind you those that know me may think otherwise!     

Guest user
Not applicable

Re: Arimidex - R U normal after the 5 years?

Hi Christine, i hope i can be of some help.I took my last arimidex on tuesday and am experiencing some withdrawal symptoms - lots of hot sweats and joint aches but im encouraged by a friend of mine who finished her course a month ago and feels great, so im looking forward to feeling that way too !

If its any use i can post my progress maybe on a monthly basis and let you know how things are and hopefully offer you some reassurance ? I would also like to hear how others have felt after finishing their arimdex too ?

christiane
Member

Re: Arimidex - R U normal after the 5 years?

How unfortunate, Olivia07, to have it return after 17 years.

You may be right that a lot of the side effects I am experiencing from Arimidex may be just signs of getting older - as I am already 3 years older than when I started - and by the time I finish I will 5 years older. So maybe not all the so-called side effects will disappear when I finish. It may well be 'anno domini'!

Hopefully the little white pill will protect me and you and I really must remember your advice to keep smiling!

olivia07
Member

Re: Arimidex - R U normal after the 5 years?

christiane - a word of encouragement. I have been on Arimidex for two and a half years after a recurrence of my BC after 17 years. I was previously on Tamoxifen for 3 years but stopped because of the dire side effects which ruined my quality of life. The side effects of Arimidex settled after a few months but I still get flushes in the night (I take my pill at night)and cannot remember the last time I slept through! I wake up every morning with my heart beating fast and have a hot flush even though my oncologist thinks I am making this up!! Other side effects, I sometimes think I should not blame on Arimidex but on getting older.
What a burden we all have to live with but keep smiling - it helps.