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Stopping Anastrozole

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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

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


 

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Re: Stopping Anastrozole

Have just stopped taking Anastrozole on Xmas Eve 5 years after starting.

Trying to monitor withdrawal symptoms. So far I've had heartburn a few times and a bit of cramp. 

Have not wanted to go out. Ache all over but don't think my legs ache as much but my feet are still stiff.

Had a painful and runny nose, however, the drug affected my sinuses so think they may now be clearing at last. 

 

Has anyone else noticed withdrawal symptoms? If so, what and how long did they last?

 

Definitely had a foggy brain on this drug. I eventually became depressed and anxious so needed anti-depressants which have helped. Apparently, this is common but when I spoke to my consultant at the time he said the drugs don't affect the brain. I hate to differ with him but this is not patently incorrect. 

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Re: Stopping Anastrozole

Hi Treeze I’ve been taking Anastrozole for just 3 months but stopped due to the joint pain issues I’m now about to start Letrozole which doesn’t sound much better 🙁
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Re: Stopping Anastrozole

I would love to stop taking anastrozole..if I dared but dont think I do.I get good days of maybe a week or so where I dont ache so much and then something new hits me.Last Saturday I got up with weak painful knees as often occurs but one didn't let up and feels as if the knee cap sticking and cracking on moving.Also swelled behind knee.Doctor is sending me for an xray.Also this week my hip very painful and developed pain down my left shin which wakes me if it striked in the night.Yesterday barely made 3 hours at work with pain, so glad its Christmas week and not doing my aft job too.I worry a lot about the state of my bones and joints as they seem so weak and my mobility.I'm only 58 not 88 and walk everywhere and have to work as theres only me.Besides which, I WANT to.do stuff.At the moment my bones feel too weak for exercise and I'm frightened of pulling something as I must have done unknowingly with my knee.I've been on it for 2 years and no bone strengthening injections for ages as I have an ongoing problem with a mouth abscess so they wont risk it.I would love to stop medication but theres my family to consider if I got a recurrence and practical things like then not being able to work again and pay bills etc.
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Re: Stopping Anastrozole

Hi TP, I can so empathise with your difficulties, I started taking letrozole almost 3 years ago, the joint and bone pain were just so debilitating, I suffered my first fracture after 15 months. I have recently been changed over to tamoxifen by my oncologist having only taken it for 4 months I cannot take it any more , I suffered with terrible hot flushes both day and night. I too am a nurse working in the community. I have sen my GP this week and agreed to stop the tamoxifen and return to letrozole although I must say I am really considering stopping this treatment altogether, my quality of life is significantly affected. I have tried different brands of letrozole and thought the brand I am on suited me better .... perhaps not. 

I am due to see my breast surgeon in February so will discuss this with her at that time. 

 

Not many options have we ?. Sending you very best wishes. 

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Re: Stopping Anastrozole

Dear Kathyx

 

Your situation is similar to that of many of us; you are not alone. Quality of life is so important, especially at our age (I'm 69).

 

A specialised nurse I spoke to over the phone at Breast Cancer Care was extremely sympathetic to the issues and said that most women with a history of depression find they have to come off Endocrine therapies. When I mentioned this to my Consultant Oncologist, he said that is absolutely true.

 

I too have a history of depression. Mine is atypical and appears to be associated, at least in part, to dopamine levels. I am prescribed, in the long term, a drug that is a dopamine agonist. Tamoxifen is a dopamine antagonist, and affects dopamine transporters in the brain. My GP has agreed it would be unwise to take it.

 

The general advice given to me by my very understanding BCN and echoed on the BCC and Cancer Research UK sites is to keep weight down, keep to a healthy diet, avoid alcohol and not to smoke.  Beyond that, there is no scientific evidence that omitting certain foods is likely to give any protection against a recurrence of cancer. It's a matter of eating sensibly and enjoying what we eat.

 

All the very best for your own experiences.

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Re: Stopping Anastrozole

As I haven't started AIs yet (start date planned for middle/late January after finishing rads) I hope it isn't inappropriate for me to post here. However, several posts on this thread really spoke to me and studies quoted backed up my own wider reading which is why I think I'm unlikely to take them for long, although, as with everything, I'll give them a try.

 

For me, many of the common side effects are already things I suffer from - arthritis pain in my knees (already exacerbated by Taxol and Herceptin), depression (on and off Prozac for 25 years) and hot flashes (suffer badly from the summer heat here in SW France and already spend most of the time indoors with the air con on). For some reason, the bone weakness bothers me less but the loss of cognitive function would be insupportable.

 

As someone has already said, age comes in to it as well.  If, when I had BC 30 years ago, someone had told me that by putting up with 5 uncomfortable/painful years I was greatly increasing my chance of living for another 50+ years that might well have been a trade off worth making, particularly having married only a couple of months before my diagnosis. Now, at the age of 68 and widowed 3 years ago, putting myself through that for 5 years (much less 10!) to increase my chances of living  into my 80s rather than my 70s - just doesn't make any sense to me.

 

I don't have any family and live on my own with my surrogate children (ie dogs and cats) and, really, having a decent quality of life is all I have left. If I can't walk my dogs, read reasonably challenging books and go on occasional city breaks (mooching round exploring) then I would not only lose quality of life but actually have no life at all. It's really difficult to explain this to friends because it can sound as if I'm suicidal (which I'm not) but I just don't believe in having more life at any cost.

 

Anyway, I've given up alcohol, lost 3 stone and I'm working at cutting my oestogen levels naturally (about which I can find nothing on this site) and I will give AIs a go in case I should be one of the lucky ones. Otherwise, a couple of months of side effects and I'll stop. (Apologies for rambling.)

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Re: Stopping Anastrozole

This is a post I put in another thread on this forum recently.

 

My information comes from scientific papers obtained by searching NICE, the BMJ and the Lancet sites.

 

As the Aromatase Inhibitors effectively block production of oestrogen altogether, we have to face the consequences of oestrogen depletion as long as we are taking them. The Electronic Medicines Compendium states for Exemestane: ‘Most adverse reactions can be attributed to the normal pharmacological consequences of oestrogen deprivation.' Letrozole and Anastrozole have much the same action. All the Aromatase Inhibitors are notorious for causing cognitive problems, as well as severe joint and muscle pain and, in some patients, severe depression.  

 

Oestrogen depletion in itself can have damaging effects on our bodies, including our cognitive abilities, so it's a matter of deciding where our priorities lie. Are we so afraid of cancer that we subject ourselves to a miserable life with debilitating health issues, or do we take the risk of a cancer recurrence in order to have quality of life whilst we have it?

 

There are two main oestrogen receptors, ER𝜶 and ERβ, which are expressed throughout the brain. In general, ERβ is expressed at high levels in the hippocampus and temporal cortex, whilst ER𝜶 is expressed at higher levels in the amygdala and hypothalamus. Multiple studies have indicated that AIs and Tamoxifen can cross the blood-brain barrier and enter the brain. All AIs inhibit both ER𝜶 and ERβ whilst Tamoxifen has a mild stimulatory effect on ER𝜶 and completely blocks ERβ activity. 

 

The information on Tamoxifen in the Electronic Medicines Compendium suggests that adverse effects are closely related to the drug's effects on the two oestrogen receptors. 

 

Quoting from a research paper (downloaded from NICE) published in 2014, several studies have reported the negative effects of Tamoxifen on cognitive function. Results indicated that patients in the Tamoxifen group were significantly impaired and performed significantly worse on various tasks involving memory and information processing. The study demonstrates that breast cancer patients taking Tamoxifen have several decision-making impairments. The findings may support the idea that Tamoxifen resulting in cognitive changes plays an antagonistic role in the areas of the brain where oestrogen receptors are present, including the prefrontal cortex (responsible for higher level functioning), the hippocampus (responsible for factual and episodic memory) and the amygdala (controlling fight or flight and emotions). There are quite a few other papers making very similar observations. 

 

NHS Predict Version 2.1 is generally used by oncologists to give us some idea of our likely lifespan with or without endocrine therapy. Unfortunately, it only takes into account the pathology of our cancer, our age and how our tumour was detected. It doesn't allow for lifestyle, co-morbidity, or give any guide as to what might kill us eventuallly, or how far our lives might be reduced by the treatments themselves.

 

I discussed all this recently with a friend of mine who is a very experienced doctor who has worked in public health for many years at a senior level. These were her observations. 

 

Cancer treatment efficacy is always measured in terms of 5 or 10 year survival (as a proxy for cure) whereas for many other interventions we look at QALYs (quality adjusted life years) which takes quality of life into account.  We have conditioned people to aim for cancer elimination almost at any cost as it is assumed that living with it is too fearful.  In reality it is no different to any other chronic condition that people may live with.  I think this has come about because the big advances in cancer treatment have been with childhood cancers where aiming for cure is entirely reasonable and parents are often accepting of short term distress for their child if they have a good chance of achieving a normal healthy life post treatment.  Priorities and decisions are very different at the other end of life.

 
So, it is very much down to a matter of personal choice. Do we do as the oncologist tells us and suffer debilitating health issues in order to just stay alive, or do we treat quality of life as a priority?
 
I had to come off Anastrozole on 24 Sep this year after taking it for 91/2 weeks; my symptoms had built up gradually and included severe depresson, extreme joint and bone pain, nausea, weight gain but reduced interest in food, reduced cognitive abilities (like thinking through pea soup), fatigue, extreme irritiation of the sort where you feel extremely angry about nothing, complete lack of motivation to do anything.  My BCN and my GP agreed I should stop taking the drug, these symptoms being largely those associated with oestrogen deprivation.
 
Subsequently I've seen my Consultant Oncologist who has suggested Tamoxifen. I explained to him the information I have found (outlined above) and asked him if he felt this was accurate. He replied that he din't know and would have to look it up. I've also spoken to a clinician in the Breast Unit of my hospital who has had 20 years experience of working with breast cancer patients. Whilst being a lovely sympathetic person, she couldn't tall me anything either, remarking that I would know more pharmacology than any of the doctors treating me.
 
After 11 weeks without Anastrozole, I have returned to where I was before taking it. It isn't just a matter of 'getting the drug out of your system' as it appears to be the effects of oestrogen depletion that cause the most problems, so it's a matter of giving your body time to start producing oestrogen in your fat cells again, and for the oestrogen levels to return to normal all over your body, including in your brain. No-one has been able to tell me how long that can take. Presumably, it will be different for different women.
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Re: Stopping Anastrozole

I have been taking Anastrozole for 11 months, I was trying to make it to at least a year at my oncologists urging.  I have had steadily worsening symptoms especially over the last several months.  Hot flashes were first that improved but quickly stiff joints added to my arthritic knees, brain fog, fatigue, bone pain, and a general overall feeling of lack of motivation and depression crept in.  The final straw was yesterday when I woke for work and could barely walk.  I limped around all day and felt like I might not be able to take another step.  I called my oncologist and said I had had it and was done with this medication.  She quickly agreed and instructed me to stop and we would discuss Tamoxifen at my visit in a few weeks.  I am hopeful to feel better as this is an awful way to live, I just turned 60 this week and feel decades older, I sailed through surgery and radiation but this medication has knocked me down.  I am a registered nurse and work hard all day, I truly feel my sanity and career were in jepardy if I continued this medication.  I looked up the half life and found it to be 50 hours!  Can anyone tell me how long before I will feel better and if my joint pain will improve.  My fear is this is not going to improve despite discontinuing the medication and I will never feel myself again.  Also I am interested in hearing about those who had severe side effects with Anastrozole and started Tamoxifen subsquent to stopping Anastrozole, how you did and what you think of the Tamoxifen.  Thanks for your feedback in advance.

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Re: Stopping Anastrozole

I have had the same problems..but the depression and anxiety has been awful...still trying to get over this awful stuff...

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Re: Stopping Anastrozole

I totally agree with you Jacey.  

I was put on Anastrozole after stage 1 ER+ breast cancer.  I sailed through surgery and radiation.  I started this medication and in less than 6 weeks I could not move without severe pain in my knees.  My hair is falling out and I am having a fullness in my chest with heart palpitations.  I stopped the drug.  I am NOT going to live like this. It has been 2 days, so I have not seen results yet.  That is why I am on this forum.  I was hoping to find out how long it will take for my symptoms to resolve.  The pharmacist said about 10 days due to its long half life.

There are better ways to lower your estrogen.  Eat whole and healthy. Avoid red meats and if you eat meat, it should be organic.  Daily aerobic exercise and get to an ideal body weight since estrogen hangs out in fat.  Limit your alcohol to 3 drinks a week.  Tumeric is great along with over a dozen herbs.  

AND, the most important thing...believe that you are cancer free.  Live life.  Have fun.  

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Re: Stopping Anastrozole

HI,ladies and gents.

 

Well its not a month since i left my last post.

 

But is has been 7 weeks OFF anastozle tablets.

 

Well let me tell you,i feel so happy. no aches and  pains,no more feeling sick. blood pressure do not know yet  {they have started me on new tablets to open my heart valves}

 

I am at the moment dancnig,laughing,and enjoying  myself.

 

I can actually walk with out  the pain, i can make decisions on everything, i go shopping,i am doING all my gardening again.

 

But ladies remember it is mind over matter, plus relieve from a oil that is being noted FOR  getting rid of CANCER,,MRS and ACNE.

 

Just thought i would give you all a update report.

 

BUT REMEMBER,WHAT SUITS ONE,DOES NOT SUIT ANOTHER.

 

SO,good look to all of you,and i hope you all learn to cope wih the symptooms, but if you do your research you might find,like i have there is a alternative out there.

 

This drug is no joke,but remember, THERE IS A CHOICE

 

 

 

I HAVE NOT LET MY ONCOLOGIST KNOW, THIS IS MY DECICION.

 

LIKE i said in my last post, THIS IS MY LIFE,and i would rather have a few  decent years of pain free life.

 

 

 

Rather than having 5/10 years of HELL,our famileys are also going through the same.

 

 

SO this MY  DECISION,I DO NOT RECOMMEND IT FOR OTHER LASSES AND LADS.with out contacting your oncologists.

 

ITS WHAT IS RIGHT FOR ME.

 

ALL do your research,if you are capable, GOD BLESS YOU ALL.

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Re: Stopping Anastrozole

Ann-m,

Thanks!  I needed an idea from someone who understands!  It’s the perfect ideA!  God bless you! Braindoc

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Re: Stopping Anastrozole

Hi Braindoc,
Well, you’ve certainly been through the mill with all of this.
Just a thought, is it an idea to start a little daily exercise routine gradually, maybe for about 10mins, then build up as you feel able to?
Like you, I’m on tamox & have been on it for over 2 years now without any significant issues.
Wishing you well with it all
ann x
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Re: Stopping Anastrozole

Dear mcnulcc and Luck, plus other sisters,

Since my last note, I have a new oncologist, who actually read my chart before my appointment, and who listened to me.  Testing has showed my memory function to be at or below the 16%ile, and I am quite a bit more impulsive.  I’m now taking tamoxafen daily with just aches and pains so far. No cognitive worsening.  Fatigue,a few more migraines, constipation, but no insomnia or severe hot flashes.  It’s much more tolerable.  It’s not as effective, per research, at breast cancer recurrence prevention, but I feel like I can survive taking this.  Tamoxafen is a selective estrogen receptor modulator that blocks estrogen in breast tissue, but not in bones or pelvic organs.  It does not block the entire body’s estrogen.  It can cause endometrial cancer and blood clots, etc. 

 

I’m feeling ok on the tamoxafen, but I’m mentally worn out!  I had gotten to the point of exercising, and lost a few pounds.  All of a sudden, I lost my momentum.  Just want to rest/sleep all day.  I don’t feel sad; just NO motivation.  I am attributing it to the succession of meds that gave me language and memory problems, so I can’t work, plus having to try 2 other meds.  Even though Tamoxafen has been ok, I can’t get going. Any ideas for this?  Do you think I just need time?  Prayer?  Or do I just grit my teeth and get off the couch?

 

Thanks for being here!  Braindoc

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Re: Stopping Anastrozole

HI,my blood pressure has gone through the roof, 210/125. i have given up this drug all togeather,read my post on the forum.good luck.

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Re: Stopping Anastrozole

look at the latest report on here from me, if you want to contact me let me know, mary
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Re: Stopping Anastrozole

HI all

 

I first had cancer of the colon when i was 18.

 

since then i have had cancer of the womb, totally removed .

 

 

What i would like to know is why in 2015,they took a biopsy, of my breast and missed the breast cancer cells?

 

IT was me that went to the doctors, AGAIN AND TOLD THEM,I HAD BREAST CANCER,they sent me to the hospital,and sure enought, the cancer was there, they operated,all of the cancer team and my surgeon was fantastic.

 

 

This was aug 2016,had 35 days of radiation, i was warned by my oncologist it could cause other problems.

 

Now why should i have had cancer,operated on  since i was 18 , but did not have to take tablets for five years?

 

In the times i had the other cancer in my body, i was not allowed HRT.

 

So,why should i now take Anastrzole for five years.?

 

Yes, i unaderstand that when you have been through the menopose,that your body still makes estrogen,that can attack your breast cells.

 

But to take these tablets seems a bit over the top for me.

 

I have been on them since 2016,i have never felt so low down in my life,also my weight has gone from 11st 3 to 8st.04,i feel so confused,kept on forgetting things,aches and pains all over my body, but the worse was i did not,and still do not sleep,it is a nightmare.

 

So now i have decided a month ago i had have enough,THIS IS MY LIFE,WHAT EVER I HAVE LEFT.

 

I do not want to live it in AGONY of aches pains and no sleep.

 

So i have no intention of taking these tablets any more.

 

I have also been told by a very proffesional person in the DRUG DEPT,that a lot of these drugs are being used as BLACKMAIL.to frighten people into taking them.

 

This is because the pharmecutical companies give the british goverment SO MUCH MONEY for issuing them.

 

NO SURPRISE THERE.

 

Now they have allowed a certain store to sell a liquid drug,that some people swear it has got rid of thier cancer,acne,and pains.

 

So i know where i am going for relief.

 

I believe if i just  take a bit under the tongue a hour befor bed time it will help me sleep.

 

At least when you are sleeping the body repairs itself.

 

So good luck to all you people who have,and still are suffering like me

 

But,i will not take these cancer drugs again,and i also believe in mind over matter.

 

I am going to try this oil, i shall come back to the forum in one months time and let you all know how i  am.

 

good luck to you all,and do not forget there are other alternatives you can try.

 

 

 

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Re: Stopping Anastrozole

Wow! Sisterhood absolutely! I have never come across another ‘me’ since my cancer journey began 18 years ago. I would love to hook up with you, even if only exchanging emails as I have felt like a total rebel on my own.....

I am also an activist, in that I am trying to change the law to make terminal illness  ‘protected characteristic ‘ of the law, similar to Maternity leave. Campaign is www.dyingtowork.co.uk

Stay strong like me.....believe in the Universe & I hope we can talk.....Jacci xx

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Re: Stopping Anastrozole

Hello - I came across your entry as I was researching symptoms after stopping Arimidex.  I just wanted to tell you that your are not alone as a rebel - I have been bucking the medical advice I've been getting for 7 years.  If I listened and did everything they want me to do I know that I would have been dead long ago and the little time I had would have been of such poor quality it wouldn't be worthwhile.  I honor you and the decision you have made,  One of my big frustrations with my oncologist is her inability to answer my questions about what kind of pain and other physical problems to expect as the cancer advances.  Hope that these are manageable for you as you make your way to the next part of your journey.

 

Yours in sisterhood,

Pam

Catalina Island, California

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Re: Stopping Anastrozole

Braindoc. I am 3 months into Letrozole. I have never taken HRT due to history of BC in family and blood pressure problems but have to say the se from the Letrozole have floored me insomnia night sweats nausea to name a few. I was seriously thinking of stopping the tablets but as my cancer was highly hormone receptive I am worried about doing that. I have a meeting with my oncologist in early October having finished Radiotherapy 10 days ago. I am looking for alternatives as I also don't want the bisophospates that seem to come hand in hand with Letrozole. Will be interested in hearing more about how you get on. Chris
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Re: Stopping Anastrozole

Hi Julie and everyone else,

I took anastrozole for 4 months.  I had terrible side-effects!  The worst were:  not sleeping, brain fog, very poor memory, balance problems, depression, terrible fatigue, weight gain, and the other usual complaints.  I stopped it 4 months ago, and gradually got better.  About a month ago, I started doing things, such as grocery shopping and cooking a little, and was hopeful.  My brain was working almost normally, except for my wor-finding. My oncologist pressed on me to start AI’s again, so I took 3 doses of Femara (Letrozole) over 1 week, and had return of all the symptoms.   Stopped it right away, but am still reeling from the setback.  I am gradually getting better, but I’ve not been able to work for 5 months.  My optimism has left me!

 

The new plan is to use Tamoxifen, but I don’t know if I can take the side-effects from this, if it’s close to the same!  I’m just being able to sleep again, but have NO energy or ambition to get off the couch.  I think most women recover faster.  I pray that you feel better very soon!

 

My oncologist ( the new one) tells me I’m likely having terrible side effects because I was on HRT for these symptoms for 10 years before I got breast cancer, and had to stop it.  

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Re: Stopping Anastrozole


@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



Hi....I have secondary breast cancer. I had severe spread to my liver, I reluctantly had FEC chemo as my liver was nearly into failure. I was told not to expect to live longer than a year. I was put on Anastrozole after my chemo. Well, six years on, still alive, but fed up of feeling so tired all the time etc.....I took the decision to stop taking Anastrozole. I am declining all other treatment & wish to die with dignity. I have seen too many of my friends take one different treatment after another, but still did before me. I think a strong mental attitude etc helps. I do not have a kind Oncologist. I have requested just three monthly CT scans going forward so I will have time to put my final instructions in place. I feel better since finishing Anastrozole, not sure how it stays in my body for as it is approx 8 months seen I decided I wasn’t doing it any more. Quality over quantity of life is important to me. Has anyone else been a rebel like me? Thanks xx

 

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Re: Stopping Anastrozole

Hi....I have secondary breast cancer. I had severe spread to my liver, I reluctantly had FEC chemo as my liver was nearly into failure. I was told not to expect to live longer than a year. I was put on Anastrozole after my chemo. Well, six years on, still alive, but fed up of feeling so tired all the time etc.....I took the decision to stop taking Anastrozole. I am declining all other treatment & wish to die with dignity. I have seen too many of my friends take one different treatment after another, but still did before me. I think a strong mental attitude etc helps. I do not have a kind Oncologist. I have requested just three monthly CT scans going forward so I will have time to put my final instructions in place. I feel better since finishing Anastrozole, not sure how it stays in my body for as it is approx 8 months seen I decided I wasn’t doing it any more. Quality over quantity of life is important to me. Has anyone else been a rebel like me? Thanks xx

 

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Re: Stopping Anastrozole

I haven’t been checking in, because I’m a bad example! I couldn’t remember anything while on anastrazole! I got lost while driving, and couldn’t longer work. I stopped it after 5 month, and got fairly close to normal after 3 months. My oncologist was not happy, and asked me to try Letrozole. It only took a week of that to put me back in the demented range!

I researched the AI’s as a group. The extension from 5 to 10 years does decrease cancer recurrence, but does not lengthen survival. That means to me that I anastrazole and Letrozole MAY increase death rates from other causes.

If I did not have severely disabling side effects, I would stay on them, but I had to stop them to have a quality life after treatment for breast cancer. I asked my oncologist how much the AI’s reduce my risk of recurrence. With my tumor size and type, it was 2% at 5 years and 5% at 10 years. This information helped me decide.

Next discussion needs to be risk of HRT after breast cancer! That literature is VERY interesting! God bless you! He’s the one who has us in His hands!
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Re: Stopping Anastrozole

Hi,

Yes I did lose the weight once i stopped taking them but have had to restart them again.

My GP is concerned! I enjoyed my break & felt so very much better off them.

Flushes, aches are all back again;so quickly within 3 weeks.

I intend to have a break from time to time still. 

Let me know how Julys apt went.

Gillian x 

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Re: Stopping Anastrozole

Hello! I have experienced some of the same withdrawal symptoms...This Monday the 9th I will have been off for 1 month after 5 years. I was also taking celexa to help with SE's of Anastrozole I weaned off it a week ago and feel odd as well.
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Re: Stopping Anastrozole

Hi,

I'm new to this forum, and found it by searching for advice on stopping Anastrazole after 5 years.  I was originally told to take it for 5 years, but then that was increased to 10 years.  However my consultant did say that I could try stopping for a month after 5 years, and if I felt the benefits outweighed the risks, I might want to stay off it.

After a week off Anastrazole I felt hugely better, and I'm now wondering what to do!  I wrote to my consultant  (does one not consult a consultant??) asking for advice, but after 3 weeks she hasn't deigned to reply, so I guess she's sitting on the fence, and forcing me to make up my own mind!

I think I might try earlier advice on this site, and see if taking it on alternate days works.  And I'm reading all the research papers I can find on the internet from respected sources, which make for interesting reading.

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Re: Stopping Anastrozole

Hi. I started taking anastrozole following a oopherectomy. I lasted 3 months. I could hardly function. I asked if I could go back on tamoxifen, although not ideal post menopause (due to op) it was a better option for me. It's also worth trying different brands of your tablet. Side effects can differ between each brand. It's annoying when we have so much other stuff to deal with. You get to the age where you don't if 1. It's your meds 2. Menopause or 3. Your age! Love to you all..xxx
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Re: Stopping Anastrozole

Hi. I started taking anastrozole following a oopherectomy. I lasted 3 months. I could hardly function. I asked if I could go back on tamoxifen, although not ideal post menopause (due to op) it was a better option for me. It's also worth trying different brands of your tablet. Side effects can differ between each brand. It's annoying when we have so much other stuff to deal with. You get to the age where you don't if 1. It's your meds 2. Menopause or 3. Your age! Love to you all..xxx

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Re: Stopping Anastrozole

Hi Gillian:
Were you able to lose the weight once you stopped?  I've been taking them for almost 3 years and have gained about 20 lbs!  It truly is THE most distressing thing to me. (I have ALL the others, like menopause on steroids!)
I want to stop - or at least take a break.
I have a doctor's appt in July and plan to discuss it seriously with him then.  I am so very unhappy.

 

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Re: Stopping Anastrozole

I stopped Anastrozole last April after being on it for 5 years.  I was not prepared for these "withdrawal" symptoms (as I call them!) that I have been feeling since then - lightheadedness, gassiness, dryness in my eyes, some infrequent leg cramps during sleep at night. Did not have any of those during the 5 years I was on it, but a slight increase in my joints pain, which I attributed to aging(I am 64). Has any one else experienced these post-Anastrozole? My doctors did not know of past patients getting these symptoms after being off of it.

Thank you! Any reply will be greatly appreciated!

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Re: Stopping Anastrozole

I stopped taking them after 2 months.My effects were as stated by pretty much every user.  My GP has advised to to go back on them but says a break of 2 months is not too detrimental. I am using the time to seriously lose some weight. It has been constant for years but having a dead line may well help. My joints were really aching on the meds so I'm hoping that will help. It's pretty much all I can do. I must admit I feel so much better not taking them but feel there is not a choice.

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Re: Stopping Anastrozole

Also I am NOT suggesting that all people should take anastrozole every other day. That was only a suggestion for people who were having such a hard time they were thinking of giving up completely. I am worried about the effect of anastrozole on my cholesterol which is already high - hence my cautious approach.
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Re: Stopping Anastrozole

Yes, anastrozole prevents your fat cells from producing oestrogen. It accumulates in the body and has a half life of about 2 days so even on one every other day there is still a lot of anastrozole in the body. Tests hve shown that the drug is very effective at reducing oestrogen but there are other ways as well, losing weight being one of them. Exercise another. And there are natural products such as chamomile
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Re: Stopping Anastrozole

I have to say that I thought all the same things as you.  I assume we are only given the hormone tablets if the cancer was ER+? Even after menopause the body continues to make oestrogen albeit in small amounts, so guess the tablets are to protect against this? 

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Re: Stopping Anastrozole

I tried on the NHS but the lowest value they could check for was 50 pmol/L which is about normal for post menopause. So I ordered a test online from Medichecks (£60 including having the blood sample taken at a local private hospital). Not cheap but worth it to find out. Their lowest level they can test for is 18.4 pmol/L which is much lower than normal for post menopause.

There are two sets of units for measuring estradiol which is the important hormone. One is pmol/L as above. The other is pg/ml. 18.4 pmol/L is equivalent to about 5 pg/ml

Some research papers use one type of unit, some use the other. You need to be careful to check which they are using. 

Anyway, I know my level is LESS than 18.4 pmol/L but I dont know how much less. But at least it is a lot lower than if I didn’t take the anastrozole.

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Re: Stopping Anastrozole

Should of said hormones