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Stopping Anastrozole

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Re: Stopping Anastrozole

hi all

In 2016 i had stage 1 breast cancer, a lumpectomy and 5 weeks of radiation. I have been on Anastrozole since Dec 2016. I heard horror stories but my Med Onc was adamant i take it. I also get Prolia shots every 6 months to keep the osteoporosis away since I'm estrogen +.  So it's been almost 4 1/2 years for me.

I was allowed to stop it for 2 weeks when i recently started having horrible night sweats. I was good, Then started back on it again. I am going off it. I feel 4 1/2 years is fine. I didn't get muscle aches but it does upset my stomach.  Anyone else been on it longer?

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Re: Stopping Anastrozole

Yes , I stopped. I feel so much better, but I’m a little scared the cancer would return

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Re: Stopping Anastrozole

I stopped Anastrozole after 6 months, but I only had in-situ breast cancer and a lumpectomy. I had so much pain with Anastrozole that I could hardly walk. I’m barely getting better but I’m taking pain medication. My doctor advised I’m low risk and if my cancer comes back I’ll have a mastectomy.

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Re: Stopping Anastrozole

I still have pain in my leg from time to time after stopping  Arimidex 5 months ago.

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Re: Stopping Anastrozole

It’s been 5 months and I still have pain in my leg from time to time. 

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Re: Stopping Anastrozole

I took Anastrozole for 6 months, after BC surgery and radiation treatments. I have stopped it now for 2 months.
The pain and muscle weakness became so severe it was impacting my ability to work full-time, and I have to keep working, so I decided to quit anastrozole. My medical oncologist agreed that it was impacting me too negatively. If BC returns I’ll just have a mastectomy.

I consulted an Ortho doctor about the pain after 1 month and she said it was the anastrozole and prescribed an nsaid (Meloxicam). It helped a lot. I tried to stop it after a month (to see if it was better) and all the pain returned. My medical oncology nurse said that since I had a lot of arthritis before starting the medication, that the anastrozole made it worse. She said it should have been out of my system by now, but to give it another month.

I’m going back on the pain med for a while to get some pain relief and try to get active again!

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Re: Stopping Anastrozole

It took me 3 months for side effects to go way. I still have bone pain once in a while, but nothing like before. 

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Re: Stopping Anastrozole

i have stopped taking anastrozole since jan 2020 because I was getting severe bone pain just wandering how long the side effects stop after taking the medication 

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Re: Stopping Anastrozole

Blessings and hugs to all of you anastrazole-sufferers!  

I only took the anastrazole for 2 months before stopping it, because it caused me to have an inability to remember new information.  I also had dizziness that I finally realized was due to problems putting info together.  For example, I had to stop driving, because I couldn’t remember how to safely park the car (I couldn’t remember how to judge where the front & back of the car were, despite almost 50 years of good driving!).  I didn’t have as much bone pain as many of you.

 

After a few months off anastrozole, I felt better, but never fully recovered.  I was then switched to Tamoxifen.  It gave me terrible fatigue, but left my brain alone!  It took me 9 months and a complete diet change to get to the full dose.  When I switched to mostly vegan, high fiber diet, I finally felt good again!

 

I was fortunate not to have any endometrial (uterine) bleeding.  Tamoxifen actually strengthens your bones!  Yeah!

 

Sadly, about 3 months after getting to full-dose Tamoxifen, I started feeling terrible again, despite my new, really healthy diet!  Aweful fatigue and the WORST constipation EVER!  No bowel movements for weeks!  Painful, etc!

 

It turned out that the worsening was due to diabetes!  It took 9 months to figure that out!  So I stopped Tamoxifen—more likely to die of diabetes complications than breast cancer!!

 

I did lots of reading medical info online about estrogen and brain, estrogen and diabetes.  For some of us, the loss of estrogen cuts the blood sugar (glucose) delivery to the brain.  I believe the brain sent signals to my body to raise my blood sugar, so it could get to my brain.

 

There is another way to supply energy to the brain (instead of glucose).  When we don’t eat enough carbohydrate, the body breaks down protein to use ketones for energy.  The brain can use those ketones, instead of glucose.  When I seriously decreased my carbs, And stayed on a low carb diet, I not only got my blood sugar back to normal, but I became more alert, energetic, and actually recovered physically-able to go back to exercise classes, and IMPROVE again!  PLUS, I didn’t have to go home and sleep afterward!!!

 

I know that we are all different, but now that I know how my body is affected by the blocking of my estrogen, I’m going to consider resuming my Tamoxifen or anastrozole to see if the ketones are the key to my side-effects.  If I keep us my courage, I’ll let you know how it goes!

 

God bless each one of you!

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Re: Stopping Anastrozole

From Breast Cancer Now.

 

Before the menopause, oestrogen is mainly produced in the ovaries. After the menopause, the ovaries no longer produce oestrogen, but some oestrogen is still made in body fat. This process involves an enzyme (a type of protein) called aromatase. 

Aromatase inhibitors such as Anastrazole, stop this enzyme from working. This means there’s less oestrogen in the body to encourage breast cancer cells to grow.

Last reviewed: February 2019
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Re: Stopping Anastrozole

I was on Vit D3 50,000  a week and 2, 000 of calcium a day. I have been off of aramidex for 4 months and still have pain.

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Re: Stopping Anastrozole

I thought I'd pay a visit let my story be known. Not much of a story really. In November 2019 I completed my 5 years on Anastrazole. YIPPEE That's the good news. After I finished chemo in 2013 I developed Vasculitis which required high doses of steroids on top of Anastrazole, I got Osteoporosis and had 4 Vertebral fractures. Also have Osteoarthritis. So I'm in a lot of pain and can barely walk. My advise to everyone is to look into Vitamin D3 to hopefully prevent this. Wishing everyone the best of luck.

Woman Wink

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Re: Stopping Anastrozole

Just wondering if you have stopped ? . Same issue and want to stop after 2 months

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Re: Stopping Anastrozole

Has anyone stopped anastrozole after only 2 months? 

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Re: Stopping Anastrozole

Dear Kathy,

I had similar pain in my right arm that went from 10/10 to 1-2/10 with acupuncture.  The relief lasted for 2-4 days, with gradual return.  I eventually was diagnosed with radial tunnel syndrome, and an injection was magical!  

Make sure your Vitamin D level is normal, as deficiency can cause bone pain, even off anastrazole!

 

Im also finally learning that my fatigue got hugely better on a low carb diet.  I figured it out when my arm pain was much better, if I stopped sugar.  The arm pain has gradually come back, but my headaches and fatigue are gone on a very low carb diet!

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Re: Stopping Anastrozole

LHello again, and thanks for the hug! Since my last post, I’ve gone back on the  Anastrazole and it’s just the same, painful right hand  and wrist which “burns” at any time after midnight. Very tearful, spoke to the breast care nurse last week, and she said that the drug is working and it will get better....

Last night was horrible, I’m getting tired of tea at 4 am, and cold compresses! 

Decided to stop drug and get in touch with the breast team to let them know.

Just want to get back to normal,but thank you for your helpful posts about how long the Anastrazole  takes to ease off.

 

Kathy

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Re: Stopping Anastrozole

Yes Susan it took almost 2 months for my joint pain to go away.  I have bursitis in my hips from before and that is still there but all the other pain is mostly gone now.  For me it literally happened over night. 

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Re: Stopping Anastrozole

Susan, it took me 8 weeks for the pain  to subside. 10 weeks to feel back to my old self. It’s the medication. I still hip pain and leg pain occasionally, but I feel great! I do yoga and it helps. Give it time. I  holistic now. Hang in there.

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Re: Stopping Anastrozole

Have been on Anastrozole about 5 months. I do have some Osteoarthritis but the pain in my knees, hips, ankles, shoulders has increased immensely. Can hardly walk stairs. I'm off now 2 weeks with no improvement so my oncologist says it's not the Anastrozole. Does anyone know how long it really takes to see improvement after stopping Anastrozole? And what about changing to Tamoxifen?

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Re: Stopping Anastrozole

YES for me lmc.. "Only 10 months"😣 on Anastrozole and months before the bone pain was gone.

Further 8 months on I just have a niggle in the thumb. Still got flushes but not night sweats. 

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Re: Stopping Anastrozole

Ok sorry lovely ladies for the multiple posts.  I thought I was responding to each person not the whole group.  Technologically challenged here 🤣

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Re: Stopping Anastrozole

Ok my lovely where are you located?  I was in this same boat.  I would just break down and cry from being 1000% miserable.  I started seeing a natural guy.  I’ve been seeing him for a host of problems for about 3 months.  I feared stopping the anastrozole so I waited.  In all other aspects I have had noticeable improvement.  I’ve only been off anastrozole for a month so I haven’t noticed any changes but I’m still hoping to see the changes.  All in all best decision I made.

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Re: Stopping Anastrozole

A also chose to go natural but have not informed my oncologist.  I use a guru (for lack of a better word).  He is super knowledgeable about cancer.  He has out me on a whole food supplement.  I will have blood work in 3 months so we shall see but I just couldn’t take the pain anymore.

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Re: Stopping Anastrozole

It took me about  8 to 9 weeks for some relief from my he bone pain. I still have an occasional pain , but nothing like it was. I just started Aromasin and praying the s/s won’t be so bad.

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Re: Stopping Anastrozole

This is exactly me.  I feel like I am 90 and I’m seriously about to apply for a handicap plaquacard because most day I can’t hardly walk.  I switch to all natural and praying the pain with leave me.  I have only been off for about a month and so far no change in pain. I am a massage therapist so this is effecting my work immensely.

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Re: Stopping Anastrozole

Just chiming in....I have a friend that has a different breast cancer than mine and they actually used Tamoxifen as a chemo for her.  When she told me I thought her doctor must be a quack but then I looked into and sure enough it us used the same way.  I just assume anastrozole was basically used the same way but in post-meno so I assumed that’s where all this darn pain is coming from.  I chose to go an all natural route and in praying this pain leaves me sooner that later.

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Re: Stopping Anastrozole

So did I read this right?  You were only on Anastrozole for 10 months but it took 7 months on tamifen for the pain to go away.

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Re: Stopping Anastrozole

I was on  it for 11 months and could not tolerate the bone pain anymore. 10 weeks off I feel great! Occasionally I will have pain in my leg. I start taking Aromasin in January, and pray I do not have the same side effects.

 

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Re: Stopping Anastrozole

Once you are considered to be post menopause, the current protocol is Anastrozole. 

While A is apparently slightly more effective in preventing recurrence, some of us just cannot tolerate it. My symptoms were just like Braindoc's. I was really determined and managed to get to 10 months before deciding to stop. BCN agreed and after 6 weeks off, I started Tamoxifen. 7 months on the bone pain is gone and apart from hot flushes I don't feel anything like the crippling side effects on A. I'm 61 and feel that young 😉 again.. not 91 like I did!

(By the way chemotherapy just means use of chemicals to alter the body's natural processes to aid treatment. Pill form or infusion. Just words really but it's known as "endocrine therapy ")

Happy New Year! 

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Re: Stopping Anastrozole

Hi gmorgenson,

Im not a cancer specialist, but I don’t believe that Anastrazole is considered chemotherapy.  It blocks all estrogen-like hormones from being formed in the body.  It is used to block the recurrence of breast cancer, as I understand it.

 

I had all the possible side-effects, so I was switched to Tamoxifen.  It blocks estrogen in some parts of the body, but not others.  It helped cut down on some of my side-effects.  Tamoxifen did stop my bone pain.  I hope this helps!

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Re: Stopping Anastrozole

Where did you get the information about Anastrozole being a chemo pill?

Never heard that from any doctor or nurse or other patients through the whole process😳

Rather perplexed and upset if thats really the case??

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Re: Stopping Anastrozole

What was your reason for changing from Tamoxifen to Anastrozole?

I was on Tamoxifen with relatively no pain or side effects, but I had never had a hysterectomy so I had to switch to the evil pill Anastrozole😩

After only 3 months on Anastrozole, I can not believe how I feel?!  Can not sleep! My hands are fingers are unbearably painful and feel like they are on fire. I take pain pills and script from the doctor to no avail. I can barely walk or get up out of a chair.  

If you have a choice, do not take Anastrozole!!

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Re: Stopping Anastrozole

Be very careful using the oils. 

Most, or should I say all oils contain estrogen, which might elevate or contribute to breast cancer issues. 

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Re: Stopping Anastrozole

Hi , I’m finding all the posts very helpful. I have primary BC, lumpectomy and radiotherapy.  

Started Anastrazole in August and was ok for 1 month, then the wrist joint aches began, mentioned it to the oncologist at the hospital and I was told that this was a classic symptom!Great! Persevered for 3 more months, but was being kept awake at night with wrist pain. Spoke to BC nurse, and stopped the drug for one month to see how things settled. Since I stopped, things haven’t got very much better. Hope that soon things will get better. It always feels worse at 4am!

i really don’t like this drug, and will speak to my breast care nurse again when she reviews me after Christmas!

Thanks to yo all for sharing your pains.

Kathy

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Re: Stopping Anastrozole

I am currently taking Turkey Tail  mushroom as a supplement by host defense. Read up on it. 

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Re: Stopping Anastrozole

Hello, I was diagnosed with stage 1b BC a year ago. I started Arimidex January 2019 and stopped October 2019. Extreme bone bone, fatigue, hot flashes, oh and foggy brain too! I have decided to go holistic instead of taking these drugs. Quality of life is more important to me. My oncologist gave me a 6 week break and wants me to start on tamoxifen in December. I am very skeptical  of this drug and it’s side affects. I am currently taking Turkey Tail mushroom supplement, 2 capsules a day by host defense. I highly recommend this supplement. I have lost 12 pounds and changed my diet. What  are your thoughts about tamoxifen and side effects? 

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Re: Stopping Anastrozole

Hi Gerihattrick

Guess that's how you feel rather than your real name?

Hang in there. Further to my post below,  I did stop the evil pill  (Anastrozole) in March. Like you I felt I had a high pain threshold but it was just ridiculously bad. I couldn't stand up without my hubby helping. I couldn't even put washing out. Only 61 and poor sleep too. Managed 10 months on it. Felt like I'd been run over! Spoke with BCC nurse.

Off everything for 6 weeks and I'd say the pains were just easing then I started Tamoxifen. 

Didn't want to give up on

endocrine treatment completely especially as I declined chemo. Been on T for 3 months now. Yes got flushes but not night sweats. The bone/joint pains have gone completely 😊. Strength has returned to my hands.  I sleep better  (not like I did pre BC)  and my mood is defo better.

Hope you improve.  Have an octopus hug 🐙

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Re: Stopping Anastrozole

Hi Everyone..........I stopped Anastrozole nearly 4 weeks ago, after 2 years on it, the side effects made me feel totally wretched, with all the horrendous symptoms already mentioned. My question

is, how long will I continue to feel wretched, if anything, my side effects are worse. I thought I would bounce back to my normal self reasonably quickly, but instead, find my pain level is off the charts. My hot sweats are just as bad, still not sleeping, and am spiraling into depression, when I thought I would be living a full life again. I was on HRT for 10 years before my cancer diagnosis, sailed through my double mastectomy and reconstruction, in fact I felt really well. 

I have fibromyalgia, so have a very high pain tolerance, but my pain seems to be multiplied by 10 right now. I had an Onco-DX score of 11, which gives me a cancer recurrence of 7%, so just feel that I can’t go on living like this, just don’t know how long this will take to leave my system, or is this going to be permanent?

 

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Re: Stopping Anastrozole

Hi Luck

 

I wondered how you are getting on?

 

I am also wondering about the oil you mentioned.  Are you still taking it?  

 

Would be lovely to hear from you 🙂

 

Mandy

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Re: Stopping Anastrozole

Hi I was diagnosed with breast cancer in 2007 had chemo radiotherapy and put on tamoxifen. After 10 month I was given a complete hysterectomy so was changed from the tamoxifen to daily Anastrozole. It took a long time for my body to get used to the drug severe joint pain that I was given regular pain killers for as I wanted to persevere with anastrozole as it was my safety blanket. The pain did subside gradually over time and I have lived a normal life since but now after 12 years I have been told it time to come off of them and I’m gutted it’s only been 1 week drug free but I feel my joints are becoming painful again and I’m very tired all the time . Is there anyone else who has been on anastrozole for as long as I have been and come off and had similar side effects.

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Re: Stopping Anastrozole

It isn't. Have done Letrozole & Anastrozole. Both caused severe joint pain, memory issues, fatigue, etc. Went off both. I am Stage 2b, no lymph node involvement.  Chose mastectomy and 6 rounds chemo. Prefer quality, but understand that choice is harder for higher stages of cancer.

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Re: Stopping Anastrozole

Low Price of anastrozol

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Re: Stopping Anastrozole

Hello

I have today discussed my medication with my BCN. After 9 months on anastrozole, I've decided to stop. I was a lot better on branded Arimidex, but still suffering too much on the evil pill.

However I scored 8/8 Oestrogen and have declined chemo (Stage II 4/7 nodes +ve) and so did not want to leave myself completely exposed. So I'm going to start Tamoxifen ...after a 3 week break. Will give it a good go, as I plan to be on endocrine treatment for 5 years, then I'm leaving myself to fate. I understand joint pain should go and know there is some extra risk of uterine ca and DVT. I can also return to Arimidex later, if I feel stronger

Just letting you know. It doesn't have to be all or nothing. Yes, I have questioned everything and am aware this is just my personal decision.

All the best

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Re: Stopping Anastrozole

Hi I was diagnosed with Breast cancer June 2018 grade 1 had lymph nodes removed all clear, 15 rounds of RT. I felt good for about 6 weeks then I was started on Hormon therapy i have tried 4 different types the side effects have got worse with each one.

I always struggled with HR during the menopause so it didn't surprise me the problem,s i have had.

I have felt so fatigued dreadfully pain in my knees wrists and fingers so much that some days i can't get up the stairs or lift the kettle, depressing.

I have spoken to GPS and oncologist and decided to stop for a month to see if I feel any better I hope I do I cannot carry on like this, I am 66 and have nursed all my life I now as though I'm 80.how long will it take before I feel better.

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Re: Stopping Anastrozole

Hi ! I was on arimidex for 6 weeks . I felt awful. The fatigue was the worst, both physically and mentally. I wanted to get off the couch and do things but felt too weak. I became very irritable, overwhelmed and weepy often, too often. I pushed myself to go to the he gym 3 times a week, it was supposed to help with the fatigue, right !! No it didn't. After a lumpectomy with no cancer found in my lymph nodes I had 21 rounds of radiation. I didn't need chemo. It was grade 1. I was on this medication for preventive measures. I asked my oncologist if I took the medication what was the percentage of recurrence ? She said 11 per cent. If I decided not to take arimidex the percentage of recurrence would be 15 per cent. At 61 years of age, my quality of life is more important to me than those 4 percents and feeling miserable. The hardest part for mr was making that decision to stay on arimidex or stop it. I stopped it today and I am at peace ! Good luck all you strong, brave Women ♥️

 

 

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Re: Stopping Anastrozole

I just stopped taking it after only 6 weeks on it. Never was so miserable as when I was on it. Terrible hot flashes my hands back and legs hurt shortness of breath and no energy. Plus was staring to get depressed. Can’t live like that for 5 years. They didn’t tell me it was a chemo pill. Our doctors need to be honest with us. They told me I wouldn’t have to do chemo. I have been off it for 2 days. Understand it takes about 10 days to get out of the system. Can’t wait. Good luck to anyone on this terrible medicine

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Re: Stopping Anastrozole

I posted on this thread ages ago about how awful these drugs made me feel. I stopped them and have refused them ever since. I have thought long and hard about the risks, but the safety net they offer is too low for me to agree to suffer the awful debilitating side affects I experienced. I have talked openly and assertively to my GP and my Oncologist and I'm living my life to the full NOW while fully understanding I have rejected the very small protection the drugs might possibly give.

All of life is a risk. Every day we take 1000s risks. Tomorrow may not arrive for all sorts of reasons,  so today I am living without disgusting hot sweats, without limbs and joints that almost render me immobile, without headaches, without mood swings, without skin problems or hair loss or weight gain beyond my control. I'm 60 and feel I've had a reasonably good life, so I'm taking my chances and enjoying life. Quality is essential to me.

Ladies I wish you all well, and JACCIC I think we should start a section for rebels.

Xx

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Re: Stopping Anastrozole

Been on Anastrazole for 6 months even while going thru 6 weeks Radiation treatment.. These last 2 weeks the bone pain especially low back pain , lt hip pain going down my leg and just achy everwhere have been awful ... Today my oncologist took me off anastrazole for 3 weeks ... If pain goes away she'll try another AI ... If not , I'll have some imaging studies done ... I'm a retired nurse too and right now my quality of life sucks ... I'm somewhat doubtful another AI won't produce the same or similar side effects but we'll see ... Either way , besides the bone pain , brain fog I hope things get better even for a short while .. I was told by my Radiation Oncologist and medical oncologist that with the majority of patients if you don't develop bone pain in the first 3 months you possibly won't ... Thought I dodged that bullet ... Apparently not .. just prolonged it... 

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Re: Stopping Anastrozole

Started Anastrazole in June 2018 and all was fine until September when tiredness and fatigue set in. Had started healthy eating and exercising 4 times a week. Gradually started to get bone pain, depression , anxiety, hot flushes, strange taste and other digestive problems, poor sleep pattern and no enjoyment of life. I now cannot do my exercises as I have no energy. I feel like I'm coming down with flu while walking through treacle in the fog ( brain fog) .

Surely we shouldn't have to go through this for 5 years! What damage are these drugs doing to our bodies putting us at risk of other life threatening problems. My breastcare nurse has suggested I come off the  tablets for 2 weeks to see if I feel better. I have another week to go. She suggested I may be able to change to a different tablet that may not have those side effects. However as they all reduce the effects of oestrogen then I can't see that they will be any different. If I feel better soon I may decide not to take anymore tablets so I can enjoy my life again. As a retired nurse I know how important quality of life is and this at the moment isn't it !!

 

 

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Re: Stopping Anastrozole

I stopped taking Anastrozole on Jan 7, 2019 after on it for 5 years. Have noticed left calf leg cramping if I stretch during the night or upon waking since then. Other than neuropathy in my toes, had no other side effects I was aware of while on it. Wondering if this cramping is related to stopping. 


@julie9559 wrote:

Hi,

I have posted this on another part of the forum but now realised that this is a more appropriate section.

 

I am interested to hear from anyone who has stopped taking Anastrozole. I have stopped after 3 months. I have been experiencing various symptoms including depression, incredible tiredness and weakness, poor apetite and others. My consultant has agreed that these are possibly due to the Anastrozole and recommended that I stop taking for a while.

Has anyone stopped taking Anastrozole after similar symptoms? Did the symptoms improve and if so, how long did it take for you to see some improvement.

Thank you for reading and responding