How do you go about having your jormjbe levels tested privately ? Adec70 x
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Should of said hormones
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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.
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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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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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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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
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.
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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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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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
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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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.)
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.
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.
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.
Has anyone stopped anastrozole after only 2 months?
Just wondering if you have stopped ? . Same issue and want to stop after 2 months
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.
:womanwink:
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!