First of all, it’s so amazing to have found this group. Reading this thread makes me realise what I’m going through happens to other people too which helps somehow.
After BC last year I was on Letrozole for 4 months but the muscular pain was so hard to cope with (I was ending up in bed every day) I switched to Anastrozole at Christmas. Initially it seemed fine but over time the side effects have increased. Hot flushes are the least of it. Carpal tunnel in my right hand and trigger finger in the left - to the extent that I now can’t hold a fork properly. And it was interesting to see someone talk about walking like a tin man - that’s so familiar, as is the lack of sleep. Anyway last week I agreed with my nurse that they’ll try me on Tamoxifen instead. In the meantime I’ve stopped taking the tablets and at the moment feel worse than ever - I guess I’m getting withdrawal symptoms.
I’m lucky because I caught my BC very early and like some other ladies on here the tablets only make a very small difference to the chances of it coming back. I can only speak for myself but coping with the side effects is so much harder than dealing with the initial treatment and I do wonder whether it’s worth taking the tablets. Still I’ll give Tamoxifen a try and see how I get on.
Thank you all for being there.
I’m 77, was put on anosrazole for y weeks prior to surgery, and a few days before surgery I got debilitating rib pain, so bad I was having spasms. Surgeon said stop taking it, pain gone in several days. Its now 5 weeks since double mastectomy and I’m being crippled with bone and hip and joint pain. I have degenerative spine and arthritis and shots etc have always worked well. The pains now are all in different areas, and shot not helping. Pain doc put me on oxycodone-acetominophen, now I have painful constipation, parchment dry mouth, can’t sleep, or get out of bed. I’ve also no appetite and feel I always hated aural meds because they mess up the whole body, and have stopped. I just don’t know where to turn. So glad to have found this board as it confirms for me that anastrozole was the worst thing I ever did. I live alone, too much pain to drive. No quality of life, but maybe the affects wear off eventually?
Please do take all the professional advice before making any decisions. I ended up on exmestane and it worked for me symptoms wise. I’m 4 years on now. I take cod liver oil and evening primrose to help with any joint pain. I have non bc friends going through menopause with the same symptoms. Xx
I’m stopping it today . I was on Letrozole then was switched to this . My bones hurt , I can’t sleep and my throat is soar . I’m done with these pills . I have no quality of life anymore.
I wanted to tell you I also, take Turkey tail mushrooms by Host Defense as a holistic approach. It is Made in USA.
Thanks for your post sweetpolly. Its very kind to share your experience with everyone.. I made my decision in the end, boosted by the fact that my condition is obviously not as serious as many out there.
I really dont know how I would cope with a more serious diagnosis, I suppose you just have to get on with it but Im sure I couldnt swallow a tablet that I know would make me feel ill. Its so counterintuitive.
I wish you all the best with your treatment and outcome, I really do feel for you.
I have decided not to take up the option of any endocrinal drugs, anastrozole or the latest alternative offered, exemestane.
This is my decision; I do not recommend this for others but set out my reasons below.
I have read extensively about this family of oestrogen inhibitors all of which produce similar side effects, whichever one is chosen. Other drugs are often administered to counter the detrimental effects of lowering oestrogen. I also read many posts from users of the various types.
I understand that a younger person or those with a more serious diagnosis than mine, must perhaps take this Hormone Therapy and, it is said may not, hopefully will not, be affected by side effects.
I also considered the option of ‘trying them out and changing if nec.’ As side effects often long lasting, I also decided against this option.
I discussed my concerns thoroughly with an oncologist who entered the details of my cancer case into a calculator. (Stage 1 Grade 2 ductal tumour Oestrogen Positive. No growth hormone) No Lymph Nodes affected. This gave a reading of a 1 to 2% chance of tumours returning.
She agreed that my reasons, based on age and current symptoms, for declining Hormone Therapy were valid.
My decision is made on this basis:
A reluctant return to HRT in my late 60’s gave me 3 years of excellent health. Back to happy active life, my weight normalised and all the typical, very excessive menopausal symptoms disappeared. The added unexpected bonus was the disappearance of stiffness, arthritis and joint pain and symptoms of carpal tunnel syndrome. I had forgotten about that one unti this morning!
With no HRT (i.e. oestrogen) for 3 months, all the symptoms have returned, with some additional ones. In fact ladies, I am typing this in bra and pants, no central heating (and fortunately no onlookers) but perspiring freely, I hate it. When I rise from my chair I will walk like the tin man, to the kitchen for a cuppa.
I know I must now put up with this menopausal discomfort, but logic tells me that to suppress what remaining oestrogen I have, is not going to improve matters. It may even provide me with new side effects to manage.
I worked full time until 68, also cared at home for my centenarian mum for 7 years. I am finally free at 72 years, to enjoy the large garden and greenhouses I worked so hard for. It is not unreasonable to suppose that the next 5 years are going to see me more active than any later ones. I will therefore, risk the 2% possibility of a return tumour. I was further reassured when the consultant rang me ‘because of the coronavirus and I was a borderline case’ to tell me that they were cancelling the scheduled, recommended radiotherapy. This has now been reinstated as I am not taking the Therapy
This decision is about quality of life, which becomes all the more precious in later years.
All clinicians involved were most insistant on inhibter therapy, in spite of the possible effects on an elderly patient. Only the oncologist took a more balanced view.
Hi, I would speak it’s your oncologist and see what other options are out there for you. I have been on two Aromatase inhibitors that I could not tolerate. I am now on Tomoxifen and two month in. I have an occasional hot flash, praying this will work for me. Do your due diligence in research, talking to your doctor.
When I first started I was taking them every other day. I was also taking a tums before I took the anastrozole to try to keep my stomach from getting too upset. Stopped taking them 2 weeks ago due to high blood pressure. Not sure what to do!
I am in the same situation. My breast cancer was 1A...no lymph node involvement. I had 19 rounds of radiation, no chemo. I have read there is a 10% chance of recurrence without anastrozole....5 with...is it worth it???
I read your post and was wondering if there is anything you take that reduces estrogen naturally. Please lmk as I am currently on a one month break from anastrozole due to heart palpatations and increased blood pressure from the medication. I am 69 yrs old.
I have been on anastrozole for approx 6 months and have been having a problem with my blood pressure being high. I have also been getting a lot of palpatations. My oncologist said to stop it for a month and see what happens. I have been off the anastrozole for 2 weeks and my blood pressure has gone down considerably and my palpatations have stopped. Don't know what to do ....should I stay off the estrogen blockers or should I try a different one....
Thank you Pawsome.
When I first looked at this site I read hundreds of posts, looking for something positive like yours. None persuaded me that taking this eostrogen blocking drug was a good idea. The reason I even looked was because of the range and severity of the menopausal symptoms I have already experienced, causing me to risk the return to HRT twice and staying on it. I lost all the symptoms and the disappearance of arthritis was an added unexpected bonus. Now they are all back and I feel as though I am screwed together with rusty nuts and bolts, nevertheless, coping, still active and not 'ill'.
You can imagine then, that when I read that all the endocrine drugs produce the same menopausal side effects, then read the posts, I was horrified, still am.
I try to remind myself that most people post out of frustration, desparation, a desire to help and are often genually distressed so its not a random sample, but yours is the only truly positive one I found, in fact you are quite inspirational.
I am of course afraid of returning tumours I want to continue with therapy if possible but at 72 dont want to turn myself into a permanent 'patient'. 70 something sounds old, but when you get there you still feel 25 inside and want to go on energetically and happily if possible.
Thank you again for your post, Im sure it will help many others. It has given me pause for thought before my conversation with the onc./breast team this afternoon.
What I would say is that everyone is an individual and is going to react differently. I am 42 and take letrozole and zoladex. If I’d read the posts on this forum first before taking my meds I probably would have been very worried about side effects. As it is I didn’t and I took my meds as prescribed. Other than hot flushes which have now pretty much subsided I don’t get any symptoms at all. I work full time. I walk my dogs for 2 to 3 hours a day. I do yoga and dance fitness classes (pre the virus). I am incredibly fit and active. Taking hormone therapy has in no way affected my quality of life or my ability to undertake my normal range of activities that I did before diagnosis. I have secondary breast cancer that has spread to my lungs and bones so I am also on chemo for that and that doesn’t stop me either. When I was diagnosed with primary breast cancer at the age of 26 I did experience aches and pains whilst being on zoladex and decided to stop it after 2 years. Looking back with hindsight I obviously wish I hadn’t but I also strongly feel that the symptoms I felt were most likely due to the after effects of surgery, radiotherapy and chemo - it is a massive onslaught on our bodies and fatigue and stress can make you feel quite poorly. But being on exactly the same hormone treatment this time around for secondaries I find I don’t have any of these symptoms and I haven’t had surgery, harsh chemo or radiotherapy so maybe that has made a difference? Who knows for sure. But I would suggest giving the meds a try and see how you get on and also to talk to your team before making any decisions. x
Wendy, I wished I had known about this forum before I started on Arimidex and Aromasin. I can not put into words how my body felt. On one for 11 months, 2 weeks on the other. I have always had very social and active lifestyle. I was bedridden on most days. I started taking a supplement that a good friend takes. Turkey Tail Mushroom capsules. 2 per day by Host Defense. Made in USA. Read up on it and the owner. I was not going to take Tamoxifen, and just go holistic because of my painful experiences with the other two drugs. My oncologist talked me into it as a last resort. Started on low dose 10mg and I can say so far this is working. I wish you well and yes everyday matters! I was willing to take my chances on just supplements. I will keep you posted on journey with Tamoxifen. What didn’t work for me may work for you? If you start to develop side effects right away please let your doctor know.
yours in love and cancer war,
Thank you so much for your reply, I have never engaged with a forum and am suprised by the feeling of support here. It also ties in with another post referring to the lack of engagement by many GP's who are, at best, often just a triage service, if youre lucky enough to get a referral. A whole other subject of course.
I have read many posts praising Tamoxifen and in one conversation with a consultant, was advised that I could change several times, until I found a suitable treatment. He named them, in some sort of order I thought, finishing by saying "and if that doesnt work you could try Tamoxifen". Is it a question of saving the best till last? This very much chimes with your advice to do some research. At 72, each remaining year becomes more precious, I dont want to waste even an hour of gardening or dog walking because of debilitating drugs. Thank you again.
Wendy, I have been off this drug since October 2019. I still have pain in my leg from time to time. I went on another estrogen blocker after 2 weeks symptoms came back. I started Tamoxifen in March and can say 1 month in I am ok. No fatigue, no bone or joint pain, no headaches, no night sweats, or mood swings. I do have an occasional hot flash. I have energy and don’t feel like I am 100 yrs old. I am 58 yrs old and I hope this works for me. Please do your research. Prayers 🙏🏼🙏🏼
I have just had surgery for stage 1 breast cancer (March 2020) and am waiting for radio therapy. The oncologist has written up a prescription for anastrozole which, after much analysis I am resisting.
I am 72, relatively fit, very active, well not quite so bouncy since I came off HRT. This has brought back my arthritis and all the other dreadful menopausal symptoms I experienced when stopping HRT in the past. There was Osteoporosis in the family so the HRT was helpful in this area too.
I well know the effects of losing oestrogen, now having many symptoms including hot flushes, night sweats, and the return of arthritic aching joints.
I wonder if anyone has decided to pursue endocrine therapy in these circumstances, knowing that all the drugs in this group produce menopausal symptoms. Reading through the posts, it would appear that even when stopping the symptoms stemming from the damage caused continue for some time.
Where are the alternative strategies? Are ther any?
I already suffer the loss of oestrogen from HRT, must I now elect to have what small amount is produced, blocked completely? I have almost decided not to take this option.
It is heartening to read of you brave patients who have decided that the threat of returning tumours is not as bad as the endocrine treatment after radiotherapy and surgery.
The Breast nurse has booked an appointment with an oncologist. Monday for yet another conversation!
In 2016 i had stage 1 breast cancer, a lumpectomy and 5 weeks of radiation. I have been on Anastrozole since Dec 2016. I heard horror stories but my Med Onc was adamant i take it. I also get Prolia shots every 6 months to keep the osteoporosis away since I'm estrogen +. So it's been almost 4 1/2 years for me.
I was allowed to stop it for 2 weeks when i recently started having horrible night sweats. I was good, Then started back on it again. I am going off it. I feel 4 1/2 years is fine. I didn't get muscle aches but it does upset my stomach. Anyone else been on it longer?
I stopped Anastrozole after 6 months, but I only had in-situ breast cancer and a lumpectomy. I had so much pain with Anastrozole that I could hardly walk. I’m barely getting better but I’m taking pain medication. My doctor advised I’m low risk and if my cancer comes back I’ll have a mastectomy.
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!
It took me 3 months for side effects to go way. I still have bone pain once in a while, but nothing like before.
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
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!
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.
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.
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.
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!
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.
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.
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.
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?
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.
Ok sorry lovely ladies for the multiple posts. I thought I was responding to each person not the whole group. Technologically challenged here 🤣
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.
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.
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.
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.
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.
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.
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.
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!
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!