Dhould be both not throat 🙄 xx
Hello all you lovely ladies. I had 2 lumpectomy s after the lump I found was cancer. Felt ok all through and having radiotherapy bit then the nightmare got worse as I started on letrozole. I changed to anastrozole after nearly 1 year but everything just got worse. Joint pain like I had never had in my life. I have now been off throat one for 7 weeks and have an appointment to see my surgeon and try and sort something. I have read a lot lately about taking a lower dose and feel that would be worth a try before giving up completely. Xx
Thank you JudeK!
Darlene, I hate all of the opioid meds being thrown at me as a double cancer survivor and I am not at EOL decision time. What I have found is CBD and THC concentrates when the pain is unbearable. Unfortunately big pharma doesn't want people to know the benefits of nature's natural medication. Fortunately it has been made legal for those of us stricken by undesirable joint, bone, and muscular pain. I have found it also helps with the anastrozole side effects immensely to include restful and restorative sleep. Please understand I'm not advocating for anyone to cross-ways with law enforcement, however those of us lucky enough to have legalized THC in our tool boxes, are truly blessed by the acts of compassion of our communities. Sending positive energy your way! One2nevergiveup Deb
I have been on anastrozole since March 2019 with one hiccup, a completely different and new cancer diagnosis November 2022. Went through chemo and radiation simultaneously, The oncologist had me stop anastrozole while undergoing treatment for early stage lung cancer. Once treatment was complete one of my oncologists wanted me to restart the anastrozole and one said to NOT restart anastrozole. It was very confusing for me. I restarted the anastrozole and the horrific side effects started again on day 8 of restarting. After discussing it with my loved ones I decided the pain and side effects of anastrozole was better than a certain death. I hope this helps those on the fence about their post-treatment with anastrozole, tamoxifen or whatever our doctors believe provides us with the best outcomes for a happy life. Hang in there ladies, it will get better.
I am so pleased to see this post, sometimes we need positivity. I am due to change to Anastrozole very shortly and was feeling very nervous. Coincidentally I am also on Venlafaxine so definitely feel, after your post, that I am in a better place to deal with the change.
I was also thinking of refusing all meds a few months ago as my cancer was early found and small and I was going to take the risk, but a round of biopsies to my other breast last month after my first post op mammogram made me re think that!! Thankfully it was benign but it made me decide to try anastrozole as a last resort.
Thanks again for your post, it has definitely helped me. Have a good day.
Debbie
Hi
I would like to bring some hope to this thread as I posted here last year with all of the dreadful side effects and wanting to throw in the towel! I spoke to my breast care nurse after 3 months of taking it, saying that I was going to stop. She persuaded me to give it 4 more weeks with the promise of an appointment to review and discuss alternatives or stop. I’m so glad I did! I’ve now been taking for almost one year with little to no side effects now. I am taking venlafaxine anti depressant and have increased my dose as for me it has completely eliminated the hot sweats and obviously helped with my mood at the same time. I have lost a stone by just slightly increasing the length and time I walk my dog for. My life is back on track, in fact some days I feel I am living my best life ever and these meds are just something I take to help keep me living this life. I hope that this doesn’t come across in any arrogant way saying look at me, as all I want to do is to say that for some of us if we just persevere for that extra day, week, or month we may start to feel better.
I still get stiff joints but some glucosamine off the shelf from Lidl supermarket seem to help and I do sometimes get a little brain fog in the morning if I’m tired, but an hour earlier to bed soon rectifies this. I hope you all can find a little about your day to enjoy and maybe tomorrow or next week it will be more than a little x Whatever you choose, it’s your life and your body and you must be free to make the choice best for you ❤️
Thanks for sharing Melisa. I am 43 years old and my cancer was multi focal (3 little tumors in one breast ). I got a double mastectomy with reconstruction, no chemo, no radiation needed . I was very lucky and I was very positive during the surgeries and recovery . I just started this pills plus lupron injection once a month on March 3rd. The first days I felt nauseated and needed to take a nap every afternoon. 2 weeks later started the hot flushes, mood swings , angry and down and not wanting to leave my bed . Lots of tears too. My knees hurt and I am just tired all the time .
I am also considering stopping the treatment and take the risk of that extra 20% of cancer coming back . It’s only been 1 month so I’ll make my desicion after the second month. Dealing with depression and all these side effects may not be worth it . Mental health is SO important to be able to function and have a happy life . This is so controversial and I feel so lots right now . I am glad I found this forum. Reading about your experiences is helpful .
Thank you 🙏
I am taking Anastrozole. Joint pain is bad. I am trying red light therapy. You can get different brands on Amazon. I have a wrap belt that I can use for knees, hip, back, ankles. It really helps. Also for nails and hair, try collagen peptides powder in coffee or tea or juice. I also take ashwaganda and rub magnesium butter on my joints before bed. You have to use whatever works for you.
Hi Ali
i have been taking Anastrozole for 5 months. So far the side effects have been weaker pelvic floor muscles to the point of needing tens ladies day and night. I have lung nets so was coughing a lot which didn’t help. My Pilates teacher helped me build up pelvic floor muscles and I no longer need protection but the coughing has stopped too so that has helped. I get hot flushes but debilitating. And at first I got really cold but that doesn’t seem as bad now. The only other side effect is very weak nails. I keep getting hang nails and they have always been weak but now very bad, flaky and my thumb nail looks as though it might split length ways down the middle. I’m keeping it really short otherwise I get a notch out of it at the top which catches on things. I’ve put nail hardening on so hopefully that will work. Good luck with it all.
love Jac x
Judek, I also am in the same boat you are with medication. I can't even get to a solid 2 months without having to stop meds for awhile. This is the worst medication I have ever had. The problem is they are all the same. I see my oncologist in a few days and I have made up my mind it's just not worth it. The side effects never go away as I was told my my family doctor. I'm almost 63 now and this all came up last August,2022. I was caught early stage and my numbers are pretty low so why should I continue to torture myself just for a 37 percent chance more of it not returning. I wish you and all the rest of the women here best of luck and I hope I am making the right choice. Only time will tell.
@JudeK - good morning.
Just read your post, what you describe is exactly how I am feeling with Letrazole which I have taken for 3 months. I felt better after the lumpectomy than I do since taking Letrozole and I have now said I wont take it anymore and I am being switched to Anastrozole - what I am reading about this one though sounds just as bad as Letrozole and the dread is starting at what I am letting myself in for.
I dont suppose there is anything we can do other than trial and error and hope for the best but I definitely understand where you are coming from.
I wish I had something more positive to say......
Debbie
This really resonated with me. I have been in this medication now for 8 weeks and am sat here with tears rolling down my cheeks because I feel so awful. Hot flushes, joint pain, memory loss, lack of concentration and very low mood. I sailed through my double lumpectomy and my radiotherapy with a very positive attitude and was feeling great. However shortly after starting Anastrazole started to feel rubbish. Used to live my job, now it feels like a chore and life in general seems a struggle. What I can’t understand is that my onco type DX score was low meaning no chemo needed as low risk of recurrence yet I’ve been prescribed this stuff which is making me feel old beyond my years 😭 any thought, suggestions, comments welcome x
❤️Do use the ask the nurse facility on the forum too or tge someone like me option ❤️ could help answer any questions you might have too ❤️💕💕✨✨Shi xx
Hello Ladies from across the pond. I have been searching for a forum of BC warriors and survivors. This forum regarding side effects of anastrozole is wonderful and I thank each of you for caring enough to share. My BC battle started in February 2018. Following surgery, I went through 12 weeks of Taxol like a warrior, other than hair loss, I remained active. Then I endured 16 weeks of a 3 chemo cocktail with horrific side effects. With chemo behind me, I had 25 radiation treatments. The onc-type of my tumor and axillary lymph nodes came back high risk, estrogen positive, HERC negative. It was extremely invasive and my 5-year survival rate was only 11%. With all of the treatments and taking anastrozole forever, only improved that number to 24%. The side effects of anastrozole have been daunting. Bone and joint pain is something I must learn how to live with but the constant nausea makes it extremely difficult, especially during this COVID pandemic. Yikes! When COVID-19 hit, my husband and I thought we were experts on self isolation, yet it continues to be a lonely existence. Again, thank you ladies for contributing to this forum.
Does anyone have any suggestions on how you dealt with the constant nausea?
I hope you all remain in remission and find joy as a BC warrior and/or survivor! I am grateful for the time afforded to me, this stuff is not for sissies!!
One2nevergiveup
Hello Sherwood , can you tell a bit more about your experience taking Anastrazole . Any side effects?
8 have been on anastrzole since November of 17...after a lumpectomy, 8 rounds if radiation and a horrific 3 months on femera, leading me to what I now refer to my crazy cancer med. Anatozole has made my anxiety worse, increased my pain, dulled my memory at times and made me feel 10 years old than I did 18 months ago. I've also gained 15 pounds. I am 66, and post menopausal after a complete hysterectomy at 37. So, I take meds for the pain, something for the anxiety, and a shot every 6 months for the bone density, as I akready have ostioporosis. My new normal must seem like a pod person to my grands. But I'm still here, and dont wont to relive the year 2017 when I found the malignant lump.
I am in the same situation. Did surgery, 4 chemos, then 8 chemos, radiation with good attitude. Now this harmone is kicking my butt. The bone pain is unbearable and don't want to take Op-oids or meds that give me extreme sedation. I'm taking CBD drops and Alieve for pain. Some days it works and some days it doesn't. Let me know if you found something that works.
I have been taking Anastrozole for about 2 months...Having hot flashes and I feel horrible mentally ,fuzzy headed ,thinking all over the place and feeling depressed and mood swings......this was not me a month ago...I am praying it will ease up...Going to try L-theanine cause someone said could help with mood swings and depression..this is awful...went through finding out I had cancer and having double mastectomy with a pretty good mental outlook on things and kept the faith...now after starting this med I feel horrible...
Hello Ladies
All your posts have been very helpful and informative.
After having two lumpectomy ops. I have been taking anastrozole for five months.
Hours of research revealed it is a very powerful drug and very effective at blocking estrogen production. Also that if a dose is missed, there is sufficient in your system from the day before. This is also stated in a booklet the hospital breast care nurse gave me.
The doctors will simply prescribe 1 mg. a day to one and all, as it would be time consuming to say start slowly and build up the dose gradually. but I thought it was worth a try.
My very best wishes to you all.
Eve.
Hello Gloria,
Sorry to hear about your diagnosis, however it must be be somewhat reassuring to be told you are "very low risk". I am on Anastrazole too and post menapausal.
The "redness in your mouth with white dots" sounds like oral thrush which could arise for a number of reasons. It could be the Anastrazole's effect on your oestrogen (as for some women reduced oestrogen/the menapause can cause a very dry mouth with soreness and oral thrush being problematic). Also a number of other medications and conditions can cause mouth dryness and or thrush. It may be best to talk to your doctor. If it is oral thrush, they can prescribe, for example, a swish and swallow remedy like Nystatin as well as assistance to manage a dry mouth.
If you are deemed very low risk as you state, it may be best to talk to the Oncologist who prescribed the Anastrazole or to your breast care nurse about the predicted percentage benefit for you. When you say that your oestrogen is 100% and progesterone 80%, I am assuming that when tested, the "microcalcifications" were found to be highly hormone positive. Is being "very low risk" based on you taking anti hormone treatments like Anastrazole or were you deemed to be very low risk even if you don't take it.
I am surprised that your doctor has said about ovary removal if side effects of the Anastrazole become problematic as you state you are 14 years post menapausal and it is not your ovaries producing significant oestrogen anymore. My understanding is that oestrogen in post menapausal women is produced from the effects of aromatase. Hence the use of Aromatase inhibitors like Anastrazole. If you find the side effects of Anastrazole too much, then perhaps discuss it with Oncologist and try another aromatase inhibitor or maybe Tamoxifen.
In the end it is all about you weighing up the information, your quality of life and the risks and balancing this with the treatment and effects of your other conditions. I really hope the Anastrazole does not cause an increase in your pain. Hope the radiotherapy treatment goes well.
Best wishes x
I was recently dx with breast cancer. All my tests an numbers show me to be a very low risk. The doc has put me on anastrozole for about 6 weeks now. Have redness in the mouth with white dots. sides of the tongue are tender. I a 65 and been in menopause for 14 years now. Estrogen is 100% and progesteren 80. I have fibromyalgia, gout, arthritis, and diabetic.
I did talk to the doctor about having ovaries removed in place of the anastrozole and he said that would be possible if the side effects became problematic. I do not want to increase my pain levels as they are already at 7-8 on a daily basis. I will be starting radiation on7-16 for 19 treatments. This cancer was picked up on my yearly mammogram. I did have 2 lympn nodes removed and they were negative as well. Also no chemo recommended and their is no lump. they found microcalcifications that started to cluster.
Has anyone had the ovaries removed?
I have been on anastrozole for 8 years now
Hi, Ive been taking anastrozole for a month now and ive been really unwell with it. Awful nausea and waking up in the night constantly needing a wee, also very stiff achy joints. Dr has now given me some anti nausea meds which seem to be helping and my radiotherapy is almost over.
I keep reminding myself how lucky I am as I didnt need chemo and the cancer has all been taken out of me, but I underestimated the effects these meds, and the Radioth, would have on me. I feel like an old Crone!
Does anyone know when the nausea stops? Im off work because I felt so unwell and I dont want to take extra tabs (anti nausea) for ever more.?
Hi rubycat
Just a quick heads up on anastrazole to anyone suffering bone ache. I've been taking it now for one year and almost immediately started with horrible bone ache. Sister has osteoporosis, so very fed up. As osteoporosis very much related to diet and weight bearing exercise I decided to go to the gym (hate this kind of stuff) and a personal trainer (GP's can do referrals) and within 2 months the aches have gone!
I'm feeling very good, so much stronger and more confident though of course we never actuallu know what is really going on insde BUT can thoroughly recommend. During this bad weather I've done much less exercise and consequently had the odd ache returning....but definitely worth giving it a try. I strongly recommend.
Rubycat: Thanks for getting back to me. I have not been prescribed AdcalD3. I'll ask my doctor next visit. I am curious about having estrogen levels checked to find out at what level a woman my age (65) should be or does all estrogen have to be depleted. Losing weight will help of course as estrogen is made in fat cells. I worked in a health store for over ten years, so taking a medication with all these side effects is very disconcerting. From what I am reading the benefits still outweigh not taking them.
Good luck on your journey.
Hello Liz, No I changed from the anastrozole to exemestane about 4 months ago and can't say I have found any difference at all. Still got all my joyful joint aches and pains! Would say that on anastrozole I did find enormous differences with the various brands - I tried at least 4 I think. I found Accord the best of a bad bunch, but Teva was actually the worst. Eventually I persuaded my doc to put Accord only on the prescription as my chemist would not supply it (said it was too expensive). But we are all different and I think giving a manufacturer at least 3 months is a good idea. I do seem to have a bookful of side effects, but now at the grand age of 63 they might be that dreaded word - sshhh - ageing. With the osteoporosis has your doc prescribed Adcal D3, calcium supplement, as I haven't found any s/e from that. You are so right with being between a rock and a hard place - I've never been one for taking tablets of any sort, now I find I'm rattling. I don't know of any studies, but can only say for myself, that I feel that the tabs must be having some sort of effect and I would feel too vulnerable not to be taking anything. But it's all down to individual feelings, and the awful thing is that even taking these tablets doesn't guarantee not getting it again. If you are new to this forum, I have found it a fantastic support. Whatever query or problem you have, usually someone can help. (Although I haven't been able to answer your question - let's hope someone else can!)
WIshing you a healthy New YEar as well.xxx
Hello Rubycat: I am new to the forum, but wanted to inquire if you stayed on anastrozole. I am taking Accord anastrozole since Nov. 2017 and have not felt myself. This could be our new normal after BC, but today I learned there is another manufacturer TEVA. Also, right on the bottle it says you can experience dizzyness. I have a weird headache and not keen on taking Advil every day. Also dryness, sore throat and aches. I am 65 and been post menopausal for ten years. I am wondering how much estrogen (made in fat cells) can possible be left to stay on this medication for five years. I will give it a good six month trial to see if symptoms subside. Dexa Scan says I have osteoporosis already, but after reading the side effects of more prescription medication I am trying the natural approach. I will just lift weights, increase calcium and Vit D3. I feel we are between a rock and a hard place forced to take medication to deplete estrogen. I had a lumpectomy and 30 rounds of radiation. My energy level is not back to speed. I am curious if you know of any studies done on women who choose to not take anastrozole and the recurrence of cancer? Thanks, I wish you a very healthy New Year.
Ooh thanks Jill, I didn't know that about the tamox - another good reason for me not choosing them!
Poppy, I make up names to keep myself laughing too! It's so difficult this decision making, have to find a laugh in it somewhere. xxx
Hello Smiling Poppy I've been on anastrozole for 2 years - found the Accord brand the best of a bad bunch. Just had my second DEXA scan, was osteopenic before but now got a lot worse, have osteoarthritis etc etc (all of which I blame anasty for!). I took my first bisphosphonate on Monday! I was recommended to change from the anasty to either tamoxifen or exemestane. I chose the exemessy as at 63 I'd gone through menopause. Although side effects for that also give bone pain! No good choices really. Have now got my first packet exemessy and finding my big girl pants to take the first one! Might stick with the anasty for a couple more weeks, whilst my body gets used to the bifossywhatsits first. I thought I'd go with whatever brand was supplied, give them a couple of months trial. Hope you get on ok.
xxx
Hi Poppy. I was given the Accord Brand of Anastrozole from the word go - didn't even know there were other brands till reading posts on this forum. Have been fine on it for 6 months but freaked yesterday when I collected my tabs from the chemist and saw it was Teva. Now I've no idea whether I'd have been OK on Teva or not, but on the basis that if it ain't broke don't fix it, I went back in and asked for Accord, and was prepared to cry if necessary if they demurred, but fortunately they swapped them for Accord. I am going to ask my GP to specify Accord on my repeat prescription. I've a telephone call booked with him this week for a minor query (you have to be very ill to see one in person at my practice and I haven't seen a gp since I went in with me sore boobs over a year ago) so will ask him to do it then.
Some people recommend the Ladycare magnate for menopausal symptoms - you stick it in your knickers. I bought one in advance of the homone meds but haven't needed to use it but it's there if the need arises.
I am told that the worst symptoms on Anastrozole are in the first few weeks, so fingers crossed for you that things improve as the time passes.XXXX
Hi Ladies.I have just started Anastrozole and really suffering with side effects. For the ladies that have min effects what brand are you using please? I know from taking tamoxifen that changing can help. Like you Collicsr I am having really bad hot flushes. Need to find a fix for melting make up!! My joints are painful and I generally feel week. By the time I have finished work I am good for nothing! I am disappointed that after taking tamoxifen for 3 years with no side effects that I had to change. I have also just been diagnosed with Osteoporosis so more tablets that I can't even face taking yet. I have seen my doctor who has said the side effects should settle after a couple of months so here's hoping! Lots of love to all you lovely ladies. Through everything we keep on Smiling!..xxx
Hi Alison
forgot to mention one minor side effect, (because it isn't a side effect any longer) A few weeks ago I felt a bit dry and uncomfortable in the ladybits department. Did a private email to Ask the Nurses, got a recommendation for some ReplenseMD, and problem immediately sorted, so forgot about it. I pasted my reply from the nurses under Going through treatment/hormone treatment/Problems with Ladybits if you want to have a look. Not really sure if the temporary problem was due to the Anastozole anyway - could just be that I'm 65 and would have had it in any case. But best to be prepared, and know that if it happens there is a quick and easy remedy. x
Thanks ladies
As you say I guess we often only hear the bad side-effects. I am with you Optimissy, I will sort out the lifestyle and focus on staying fit and healthy. Like you keeping the weight off helps with my already aching joints so I don't want to put any on if I can help it. Well done on losing 2stones!
Good idea about the vitamins Susie, hope you continue to feel fine on the tablets.
I am more than happy to take the pills just need to know I will deal with any effects they have.
Thank you for the positive feedback, helps a lot. I will let you know how it goes, positive as well as negative feedback!
BW
Alison
Hi Alison,
I'm with you on all the worries about the side effects of Anastrozole. I fretted over starting taking it, read all I could and delayed as long as possible, even asking if I could not take it as my ONCdx score showed a low chance or reoccurrence. No one would say that I should not take, everyone official said I should take it.
in the end I bit the bullet or pill and started taking them 2 weeks ago and I have been fine. The first few evenings (I take my pill around 6pm) I felt hyper and full of energy, but that has now worn off and am back to normal. I do get the odd "warm moment" but then I always have, sometimes I feel a bit cold (never used to) .
In all my reading I discovered that everyone seems to have different issues and I too came to the conclusion that mostly patients with problems will post on forums.
I have started taking some extra vitamins to help stave off any bone density loss and joint pain.
I have also joined Slimming World to loose weight and get into healthier eating habits.
I wish you all the best with your tablets, it's not been bad as I'd feared. And remember if for some reason you don't get on with one brand do ask to be given another one to try.
Take care and all the best xx
Hi Alison. I'm an Anastrozole lady and have been taking it since Feb this year. Like you I was horrified by the list of potential side-effects on the packet and looked at the packet in dread for a week, and took the first one on the last day of rads in case I got 2 lots of side-effects.(As it was the rads were fine...)
I can honestly say that I have had NO side effects whatsoever so far- even wondered if it was working........Being already 1 and a half stone overweight at diagnosis, I began a healthy weight-loss programme and more exercise a month before beginning the Anastozole, and have now lost 2 stone since January and am keeping it stable - (don't want to lose any more else I'll look scraggy at my wrinkled age!) The upside is that being lighter now, my pre-existing arthritis in hips is better -an unexpected bonus, since i was expecting all the predicted joint pains etc. with the Anastrozole.
I have noticed that it is important to eat healthily on the Anastozole though - if I have a pizza and chips binge with a few glasses of wine I can put on 2 pounds overnight, but a return to the veggies sorts it out in a day or so, but I think I will always have to be a bit more vigilent about calories on this drug than previously. It's a case of catching the weight gain when it is a few pounds and not a few stones.
Whilst it is still early days - exactly 6 months on it so far -even if a few side effects manifest in the future, I know i will deal with them, as the alternative to not taking the drug - possible recurrance - would be far worse. Also, if you don't get on with it there are alternative hormone treatments I think.
I have a theory about the hormone treatments for post-menopausal folk (I'm assuming you are post-menopausal as you have been prescribed it?) that there may be far less oestrogen in our bodies anyway, post-menopause, so the effect of the drug would be less of a shock to the system possibly?.Try not to worry ahead of time - the only way you'll know is to take the blooming stuff, but as the previous poster pointed out, people who are having problems are more likely to post for advice, and those who are fine on it tend not to post, unless it is to reassure, like now. All the best with the next stage of your treatment and let us know how you go on. xxxxxxx