I can't of course advise on taking or not taking Tamoxifen or Letrazole (or Anastrazole in my case) but I do take supplements and they have made a huge difference - particularly Glucosomine & Chrondoitin which has been proven to stop my hip/lower back joint pain. When I ran out in Australia and didn't take G&C for three weeks all the pain came back. A month after re-starting the high dosage from Healthspan I was back to being pain-free. Positive proof to me of its efficacy. For the record I also take calcium, omega 3, B vitamins, curcumin and soon to start Magnesium as I get cramps in legs and feet which is probably not cancer drug related. Gay X
Please can you share your homeopathic tablet regime with me?
I am about to have a double mastectomy, hope to escape radiation treatment but have been told I have to take drugs for next 5 years. The Surgeon says Letrozole, but reading about the joint pains (amongst other side effects) sounds terrible to me as a musician.
Thank you very much.
Just seen this thread on a quick visit - I'm 5 years post mastectomy, chemo, radiotherapy, diep flap and hormone therapy (stage 3a invasive ductal carcinoma).
I was relatively OK on Tamoxifen for 3 years (bearable joint pain, hot flushes etc) then put on Anastrazole by oncologist 2 years ago as post menopause. OMG - it felt like the end of my life. I was a fit, active, cycling, hiking, golf-playing, fun-loving and totally reasonable person beforehand. Post Anastrazole I was an uncomfortable, unhappy, pain-ridden monster! I could hardly walk up the stairs and I nearly lost the good relationships I had with all friends and family (not to mention my marriage!)
Now back on Tamoxifen (oncologist had advised that it was my decision on my quality of life on Anastrazole as the survival rate difference was only 2% compared to tamoxifen). Wow what a difference! I do of course have some side-effects from Tamoxifen but they are bearable and I am alive. My oldest friend from childhood had a similar breast cancer diagnosis to me (same number of cancerous lymph nodes, similar tumour size etc) and she died of secondary BC just 18 months after finishing her five-year course of Tamoxifen. It's a no-brainer for me to keep taking the pills for another five years. Stiff ankles & knees, hot flushes, occasional fatigue and all. I'm alive. Long may it continue . . . and thank goodness for Tamoxifen. Gay
I have also had a break from Letrozole due to awful side effects such as joint pain, nausea and insomnia. Slowly I returned to feeling more like my old self. However my oncologist had suggested I try Tamoxifen which I reluctantly started four days ago and lo and behold all the joint pain has returned alongside the difficulties sleeping - hence the time of this post. I am now back to wondering if the extra protection Tamoxifen gives is worth it. Has anyone had similar experience and have symptoms settled after staying on it. any suggestions for pain relief for the joint pain in ankles, wrists and shoulders. This may then help me sleep a bit better !
I tried the tamoxifen for 4 weeks and but the side effects were terrible, from bone aching, fatigue, depression, increased munchies (I was constantly hungry) hot flushes... and this horrible dry mouth which felt like cobwebs - I stopped taking it. I was a G3 tumor with no nodes but vascular. Oncologist then looked at AIs, but in mean time I studied Dim and found a homeopath who could could provide me the homeopathic version of tamoxifen (using my own tablets). So now I take this and 100mgs of Dim daily. Although I am not totally side effect free, it is livable and there is no sign of return of cancer and now coming up to my 2 year anniversay of diagnosis.
My oncologist is now looking closer at Dim and IC3.
There is lots to read and digest on this subject, but what ever you chose you have to be happy with the decision you make, for me there was no point in surviving cancer unless I could get out there and live after!
Good luck to all - happy to share the evidences I found if anyone is interested.
May I ask where did you get Vital Proteins Collagen Peptides AND 1 Move Free Triple Action collagen pill.?
I moved from Letrazole to Anastrozole 4 months ago and find that my weight has at least stabilised and I am no longer obsessed with food all the time. I even forget to eat sometimes and the ‘off switch’ telling me I’ve had enough food is back in operation.
I have had breast cancer 3 times , when I was 33, 49 and 56 the last two times have been put on arimidex and now on letrozole, and I have gained nearly 2 stone in 8years I am supposed to stay on it for another 4 years but cannot put on more weight, have tried dieting, am fairly active but cannot shift it. Reading a lot of posts it is well known to gain weight on aromatase inhibitors. Has anyone tried natural remedies ??? Ive thought of asking GP for weight loss medication but I’m sure that will have side effects !! Any help would be grateful
Had breast surgery in may then radiothreapy sailed through it then in September put on Letrozole and after a month wham joint pain hot flushes not sleeping mood swings ,been through the menoporse and now have all the simptoms back the thought of this for 5 years is not bearable .I am 65 fit and still working but finding it so hard feeling like s----t all the time help!!!!!
I was on Letrozole and began having serious pain in my knees and upper right arm. My oncologist changed my medication to Exemestane because joint pain is one of the side effects of Lerrozone.
I was on letrozole for almost a year. Almost crippled me, had hard time breathing, and cried alot...for no reason.
My oncologist gave me a 2 week break. My life was back after the 2nd day off.
I then tried Arumadex. Got off that.
Went on Exemestane for a year. As of today, Ive been 2 days off Exemestane and Again, the symptoms are going away.
The exemestane has made me gain weight, cry all the time, no sleep and this past month, I really couldnt shut my brain down. Since off, Ive slept the last 2 nights, am breathing better and have more control of my thoughts.
THIS is what learned about Letrozole. Letrozoles half life is about 2 days. That means it takes 1 1/2 - 2 days to eliminate from your body. Thst means as you take the next days dose, you've got a bit from the previous day still in your system. My onc didnt even know this.
I went to my dear pharmacist and asked her to look into the half life. I told her I had read about it and had some ideas. She did and called me and said, yes, what I read was true. I then asked her, if this is the case, isnt it reasonable that I could take it every other day? She said yes, according to what she read.
I still got off of it because the ACCUMULATED effects were debilitating.
I got on Exemestane. was great until about a year.
Let me share, that everyday I take a scoop of Vital Proteins Collagen Peptides AND 1 Move Free Triple Action collagen pill. (Glucosomine was not effective with my chemistry) This has helped tremendously. This has helped overall.
Exemestane didn't give me the joint pain like the letrozole. But I take the collagen for building and repairing. Its been very good.
Ask your dr if you can get off letrozole for 2 weeks. If your symptoms start going away, youll know its the letrozole thats giving you fits.
If it is, perhaps you can try exemestane for awhile to see how you do.
Weight gain on tamox is not necessarily a given, from my own experience, my weight has remained stable.
I was peri menopausal at diagnosis & having menopausal symptoms anyway, so for me, tamox has not really made any difference to what I was experiencing anyway. I have now been on it for just over a year.
I do eat healthily, but have increased my activity levels.
You maybe ok on it, so see how you go. Any issues with side effects can be dealt with should they occur.
I found rads quite ok to deal with, it's helpful to keep yourself hydrated & to moisturise the affected area. I used e45 cream which worked for me.
Hi have read this and am still confused as to what to do. I have been told that I will need to be on tamoxifen for 10 years. Have a weight problem and the thought of putting on more weight does not appeal. Do I speak to my gp about what tablets are available of foreign in need to go back to the breast care nurse. Sorry I sound naive but I'm just starting to look at things that I never really felt I should question the dr. Any advice would be greatly appreciated or idea of what I am looking at facing in the next ten years. Also any advice on radiotherapy treatment as I am starting mine on the 9th of this month xxxxx
Hello, I'm in a similar situation to you. . needing the knees done, but had Euflexxa injections and they've helped a bit. . . I do wonder if a lot of the pain is from the Letrozole. Has anyone on a break from it then gone back on it?
I have had similar symptoms am going to stop taking letrozole and have a break and see what happens.
Hi Buster. Exmestane definitely going well so far. The first couple of weeks were a bit trying, but so far no joint pain (other than the joints that were playing up before diagnosis!). I am so pleased I had a doctor willing to suggest something different X
Hi Janey, just wondering how you're doing on the Exmestane ? I too struggled horrendously with joint pain on Anastrazole but then tried Letrazole which was no better. Since then I've been on Tamoxifen (only the last couple of months or so) but finding a whole load of other SE's which are equally difficult to live with. 🙄. I know my oncologist said there was another drug he could try if Tamoxifen wasn't any better and I suspect it's exmestane.
Do you think it's worth a try ? I do hope you are coping better and feeling good. Xx
During my time on Tamoxifen I explored startegies to help, natiral remedies etc.
I found the Ladycare Plus magnet eased hot flushes and anxiety. I honestly did not think it would work but it has, I still using it as stopped drug few days ago but still got side effects.
I see a herbalist amd explored what I could do if not coping with drugs.
Obviously weight is issue as fat holds estrogen when we older, so I am going to lose some weight.
I checked all supplements, magnet, teas with oncologist first.
She advised not to take anything that increases estrogen in body.
Certain herbs often used to help period and menopause symptoms can do this so research well.
I have used Chamomile tincture for nausea, plus peeppermint and fennel teas.
I am assisting my immune sytem with echinacia and astrogalis.
My results show only 2% increase in survival in ten years by taking hormone drugs so whilst I want to do what I can, I do have more leeway then many others where drugs can help so much.
I have met many women who have no side effects or found they eased in a few months.
There is the Complimentry therapies section which has interesting sugestions re supplements
Have you all checked benefits of taking hirmone treatment via the NHS PREDICT tool?
Its worth exploring.
curiois ? what med have you switched to? I am currently off Letrozole (3 weeks break) to see if it eases the side effects I was experiencing-mood swing, anxiety-to depression, muscle and joint pain in ankles, feet, shoulder, arm, insomnia, hot flashes nausea, ad the list goes on! I want to do what I need to do to prevent recurrence, (my IDC was caught early, 6/2016, had lumpectomy, no lymph node activity, and 30 sessions radiation, then to Letrozole (for five yrs), but this Letrozole is proving to be a viscious attacker in many other ways to my system , enough for me to seek an alternative. Any suggestions will be greatly appreciated. I have felt so much better since being off the Letrozole, energy has returned , don't feel so down and oh how I wish I never had to take any of the aromatase inhibitors but I guess there are no alternatives of doing what you have to do that is best choice to prevent return. thanks so much!
Thank you for sharing-And God speed your journey to optimum health. My story is much like yours-BC in 2003-stage 1, no lympth node activity, only I refused the recommended 5 yr Tamox. road, but didnt know enough to push toward a holistic approach to help prevent reaccurance. 9 years later, under chyropractic care, bone pain and fracture of several ribs with conclussion/biopsy of BC was back, and had settled in my bone. Letrozole was administered (2 years on, which I took a break from now for 4 months (without my oncologyst knowledge.) Probably not the smartest move, and do not recommend this. My conversations with my Oncol. have been very clinical; He really sees no other way forward without the drugs, and still can only promise that these can prolong my life by un undetermined amount of time, and side effects from the drugs will vary. I am uncertain that he can convince me that I can live without my body utilizing estrogens. I don't believe anyone (men included) can live without these hormones. I am convinced though that I have bad (dirty) estrogens in my blood and because they are dirty, they are in part responsible with contribution of Cancer cell formation. Since then I have contacted a Holistic Nutritian Councelor who is presently administering total immune system rebuild, along with complete as I know cleanse of my blood and cell components. I am very new with this holistic approach, but do draw witness to starting to rebuild my immune system, and cleaning by body of the damage I apparently caused over the years of not eating right,and not giving my body what it has needed over time. I am reading and following "Eat Right For Your Type" by D'Adamo.
After I had stopped taking Letrozole and using bio feed back to check estrogen/hormone levels, my ct scan shows either re-growth of "C" cells, or a "post-effect" from the Letrozole I was on. Suggest of another bone scan, which I had one as recent as 5 months ago, will refuse to do one so close to the last one, so my Onc. will suggest Letrozole combined with Palbociclib, or may suggest Tamoxathin (sp)
So sorry for all the "I's" in this reply, I don't mean to make this about me as I mean to reply in hopes we can collectively join hands to find solutions to bring health back to each of us and to encourage along the journey.
Reconsider your options! I started Letrozole in 2015, the pain increased as time progressed, I thought I had a broken ankle, bad knees, a weak back and crumbling muscularskeletal system. Towards the end of 2016 I concluded that I my quality of life was being significantly altered. With a pending work travel assignment that I anticipated was going to require stamina, I requested a temporary break from Letrozole. My oncologist and I agreed to a break starting January 1, 2017. OMG I immediately started getting back to normal, by Febraury I was ready for work travel by March I was able to hike remote trails to complete my assignments. Now I am weighing my options as I had agreed to start something new on May 1. Before you go through all the procedures, discuss stopping Letrozole first and possibly switching to something else or not. Best wishes
Thanks Jaci I agree we should all follow our gut feeling. I have just had 4 years on tamoxifen but had to come off because of a bulky uterus where the lining has thickened due to side effect of the drug. They have now prescribed anastrozole which I knew I didn't want to take because of all the reported side effects and as I am living with lymphoedema I think I have enough to cope with. My husband said I should at least try which I did reluctantly well after 10 days of bone pain,insomnia,nausea and dizziness as well as other side effects that was enough I am now off them and will not be taking anything else. I think it is more important to be as active as possible and look at your diet. My gut instinct was right and I feel happy now with my decision that they are not right for me. I prefer a quality of life. As far as I am concerned not enough is known about the long term effects of these drugs and doctors cannot know everything I think you have to do your own research after all it is you that has to live day to day with any side effects you may get x
This is my first time replying on this forum. Until now all I could do was sympathize with all of you, and not offer up any suggestions of my own, as I too started with exactly the same symptoms as most of you have described. I was dx with Invasive breast cancer in 2013 at age 47. No lymph node involvement. After having a bilateral mastectomy and no chemo, I too was put on Tamoxifen. I took it for 2 years without any s/e at all. I thought I was home free! Not so much. I developed mild bone pain a year ago but explained it away. I then developed a fast growing "growth" on my L ovary 3 mos after the pain started. I subsequently had both ovaries removed in June 2016. It's been all down hill since then. My lower body bone and joint pain and overall feeling of being unwell has diminished my quality of life considerably. I developed an eye inflammation called Uveitis and my Opthalmologist recommended getting blood work to rule out auto immune diseases! Whaaat?? My Onc agreed. My Rheumatoid factor came back 4 times higher than it should be yet my inflammation levels came back really low. So bizarre. I spoke with my Onc and she suggested a Tamoxifen vacation for a couple weeks, to see if I noticed relief and an appt with a Rheumatologist:( It's been 2 weeks since stopping the Tamoxifen and I haven't been feeling really any better yet. Like most of you I too was growing weary of feeling so crappy but was not willing to chase one med after another. I prayed A LOT and was led to an amazing physician who is not only an MD with a family practice clinic but she is also a DO and is also practicing as a "Functional Medicine" physician. Look it up ladies if you haven't heard the term. It's a more holistic approach to healing the body yet also using her knowledge from western medicine. I have my first official appt with her coming up. She said she looks at the whole body and focuses on each system separately to determine a plan for optimal health. She said Tamoxifen depletes and inhibits absorption of many nutrients and once we've determined what they are she said I'm going to start feeling so much better.
I've made a personal decision to stay off the Tamoxifen, for now, as there are so many healthy alternatives to explore. I know my Onc will disapprove and I don't want to be irresponsible yet I can no longer live with such a poor quality of life and therefore must follow my gut on this one. They gave me a book to start reading called "Cancer, Step Outside The Box" by Ty Bollinger. It's eye opening.
I apologize for the long winded post.:) Prayers for all of you that you find the right solution that aligns with your heart. Listen to your intuition ladies.
Wow, I am having the same problem. What can I do about it? The oncologist doesn't want me off the letrozole. I am so upset about this aching. Please help.
i suppose it's good to read that I'm not on my own with trying to cope with the side effects of Letrozol, I had a disibility to start with but now I am completely disabled with pain. My right knee and hip which were on my unaffected side are now so painful I am at a loss on how to carry on. I have constant pain on standing and hardly able to walk. Ten years on this will see me driven bonkers, anybody elsecsuffering with knife life stabbing pain, am I developing an arthritic knee and hip osteoporosis or what😣😣😣😣😣feeling so fed up! I've just phoned the hospital for advice and hopefully a change of meds, know that exersise and diet is good, my daughter suggested an Alkaline diet anybody tried this. Sitting here with a cup of green tea, apparently coffee is acid😫lol something else to give up? welcome to our club haha 😂
I know this is an old thread but wondering if any of you are still about to answer questions.
I am looking at alternatives to Tamoxifen, I have two vertebrae with very low bone mineral density and I am reading that T, reduces BMD in pre menopausal women. My Onc team says it doesnt.
I have been reading about IC3 and Dimm - and wondered if any of you had looked into it as I saw juicing green veg - this is where the two compounds are found.
Well there are 2 other aromatase inhibitors, but same problems. I had severe allergies to all of them and so take nothing. It is stressful. I just try and eat low fat and walk a lot. I try to stay away from additional estrogen like meat and dairy, take supplemental vitamins and minerals, turmeric, and cruciferous vegetables. I also use grapeseed extract.
Since I stopped, my onc doesn't care either. I see my GP. Luckily a great guy. Oh, I take fosamax and lipitor since they are supposed to both be great for BC. But I have osteoporosis and high lipids, so that won't work for everyone.
Johns Hopkins Medical Center in Baltimore has a website where you can ask questions. Just google them.
After finishing chemo last year I was given Tamoxifen. For months I had no energy, felt light headed, had hurting knees, bad sweats and just generally felt unwell every day. I put this down to recovering from chemo, but as the months went on I thought I should be starting to feel better. Then I thought about the Tamoxifen and wondered if it was that that was making me feel rubbish all the time. So I stopped taking them for a couple of weeks - hey presto I started to feel like me again! It was great. So, to cut a long story short, I saw my oncologist and got changed to Letrozole. That was 10 times worse, I had to stop taking them after only two days.
I'm now at a loss as what to do. I can't take either of these, they are stopping me from getting on with my life. I haven't been able to work, and I literally don't feel well enough to do anything much. My oncology dept. today on the phone said I need to visit my GP now, and take it from there. I felt so angry and upset when they said that to me, as though there's no support there, because I thought I would be going back to the Onc to discuss other options, I thought that's what they were there for. I feel like it's a case of take one of these medications or there's nothing else we can do for you. I was under the assumption that if the Letrozole was not good there would be something else they could suggest. I even tried different brands of Tamoxifen (except Teva which I couldn't get so far, might try to get that again tomorrow).
Has anyone else had a similar experience, or knows of an alternative that perhaps they've been recommended that I could go to my doctor and suggest?