Hi Alys M. I just wnt to say that the only symptoms I have now is still the pain in my hands my middle finger on both hands are the worse ones and cnt not hardly bend them. I wear pressure gloves for bed to keep the swelling down but it dosnt stop the pain. I dnt regret stopping the Anastrozel which is now 7mths on I dnt have any hot sweats now my sleeping pattern is back to normal I get a full night's sleep every night. I still get tired but have jist got myself an exercise bike to try and get my fitness levels back up and I have also gone back to Zumba classes I feel I have to push myself other wise I feel more tired not doin anything. I know I am risking my cancer coming back but that was a risk I was willing to take as I didnt have no quality of life at 57. I do have the bone infusions twice a year so that cancer dosnt get into my bones and I am fine with that with no side effects,I have 2 more years of that to come. I still have my yearly mammograms in October I do get nervous when that comes round but the bonus is that u dnt have to wait for results u get to know soon after if there is any problem. I wish u all the best on your journey and hope u find something that works for you. X
I was diagnosed with stage 4 leiomyosarcoma 4 1/2 yrs ago. Had surgeries, no chemo or radiation. Managed it with cannabis oils (1/2 cbd & 1/2 thc in a capsule with coconut oil) 3 x's a day and food supplements, no sugar. It stayed away for 2 + years.......then the Camp fire of 11/08/2018. Needless to say, my cancer came back as I didn't have my "stuff" and so wasn't taking anything. More surgery and began again as it had spread to my lymph nodes in groin area. I was a bit worried about it coming back and having gone to my lymph nodes. At any rate, we just rebuilt and got back into our home a month and a half ago. I met a woman who told me she's been on Anastrozole for over 2 yrs for her breast cancer with NO problems. So, when my doc again suggested it for me because my body is still making estrogen (I'm 70 yrs old) I thought it might be doable. I have a husband, kids, grandkids and 2 greats. Though I'm on my regular stuff again, I thought it might up my survival chances. I don't have breast cancer but, I thought I'd give it a try.
I only took it for 2 weeks. I wasn't sleeping and I had (still do) sores in my mouth. But, the absolute worst for me was being awakened with severe pain in my hands (mainly right) and legs. Not so worried about my falling hair because, well, wigs and I can always just shave my head. The pain however, was not doable for me. I've always had a high pain tolerance but this is so different than anything I've ever experienced. I've been off of it for a week now and the pain is still unbearable. I'm unable to walk without help and my brain still feels foggy and the pain is still really bad. I've been told it may take several months to get it out of my system. My liver is swollen (I went to the doc yesterday) which is a concern as I've already had 1/3 of it removed twice and surgery is no longer an option for me. I was managing just fine before taking the Anastrozole with my cbd oils and acupuncture. Now, not so much. I don't think the Anastrozole is a good thing, though, I understand the reasoning behind it. I want to live too. But, for me, it's a quality of life issue. I want to be able to ENJOY my remaining time so, it isn't for me. I began taking the natural herbal hormone blockers that will help carry me through this cancer journey. We each have to do what is right for us......and the Anastrozole isn't right for me. I wish you well on this journey and hope that you find something besides the A that will work for you. Follow your gut, and remember to breathe.............
I tried all 3 of the estrogen blockers and they all raised my blood pressure to dangerous levels. I stopped taking them about 5 months ago. My cancer was a stage 1A...I am 69 yrs old. I pray BC doesn't come back but I couldn't take the pills.
Thanks for your reply even when I use my phone my thumb pops out of joint its so painful. I am goin to speak to my nurse today so hopefully might get an appointment to see about different drug. Since not taking it I have actually peeled some potatoes for the first time in 4 months its just amazing what a difference it makes. Take care x
I can really relate to your problems with Anastrozole and your history sounds much like mine. I'm 62 and was on the evil pill from July 2018 until May 2019. I too decided I was almost crippled by the side effects: I could hardly stand up alone and my hands were also getting more and more useless. I did speak to my BCN and stopped after 10 months, break for a month and have been on Tamoxifen since.
As I was Grade 2 with 4 nodes and had declined chemo, I was determined to take the pills, otherwise would have given up much earlier. BCN was happy to change and I'm told there is hardly any difference in efficacy. My movements are much better (within 2 months), but my thumb is still "wrong" and painful at times now 18 months on TX. Flushes are much less, but still have them.
For others, I have a close friend who had Stage 1 at 52 and is now on Anastrozole and her journey seems much less painful. We're all different, but there is always a choice.
Best of luck
Hi I have been on Anastrozel since June this year and omg cnt believe how quick the flushes came then the aches and pains. My hands are so bad I cnt clench a fist peel potatoes and lots of other stuff. I am 56 yrs old they caught my breast cancer early so that was a relief. I have tried ibuprofen and diclefenic tablets for the swelling of my finger that look like sausages all the time but they dnt seem to make any difference. My left thumb dislocates all the time and is painful I am so fed up with it now if bothers me that I am on this for 5yrs and if I feel like this after 5 months I wnt be able to use my hands at all so I stopped taking the Anastrozel today not had a flush as yet I know its mad I have stopped it but it is effecting my life and job so much I will take that risk.I was never told that the side effects would be like this In fact I wasn't told anything about it full stop i was told I had to go on it to stop me producing to much ostergen. I feel worse on this drug then I did having chemo and radiotherapy just dnt understand it 😒
I hate anastrozole. I’ve been taking it for almost a year and the hot flashes and aches over time have only gotten worse especially right after I take it. They are so bad that I was not sleeping. I’ve also gained a lot of weight. With that said I started taking a sleeping pill at night with the anastrozole and that seems to have actually worked. I can sleep through the night so if I’m having a hot flash I have no clue! But at the end of the day it’s worth taking if it keeps BC at bay and me here with my kiddos. Stay strong ladies! 💕
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.