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Stopping Anastrozole

kibbles01
Member

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 

Braindoc
Member

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!

poemsgalore
Member

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
Sweetpolly
Member

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.

poemsgalore
Member

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

cf1336
Member

Re: Stopping Anastrozole

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

cf1336
Member

Re: Stopping Anastrozole

Has anyone stopped anastrozole after only 2 months? 

Braindoc
Member

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!

KirbyKX
Member

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

lmcmillen4465
Member

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. 

Sweetpolly
Member

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.

susan.bosler
Member

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?

MellyL
Member

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. 

lmcmillen4465
Member

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 🤣

lmcmillen4465
Member

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.

lmcmillen4465
Member

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.

Sweetpolly
Member

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.

lmcmillen4465
Member

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.

lmcmillen4465
Member

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.

lmcmillen4465
Member

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.

Sweetpolly
Member

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.

 

MellyL
Member

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! 

Braindoc
Member

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!

gborgeson
Member

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??

gborgeson
Member

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!!

gborgeson
Member

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. 

KirbyKX
Member

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

Sweetpolly
Member

Re: Stopping Anastrozole

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

Sweetpolly
Member

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? 

MellyL
Member

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 🐙

gerihattrick
Member

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?

 

Getorade
Member

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

GAW
Member

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.

Lindley51
Member

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.

MellyL
Member

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

Lindylou2
Member

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.

Lilymay
Member

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 ♥️

 

 

Onemotime48
Member

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

Jacey
Member

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

Krisk
Member

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... 

Nanny Neese
Member

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 !!

 

 

Gaild
Member

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


 

rhubarb
Member

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. 

Di.R
Member

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 🙁
Treeze
Member

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.
Daylily1803
Member

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. 

Appletree
Member

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.

kathyx
Member

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.)

Appletree
Member

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.
TP
Member

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.