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?
I really feel for you. I wish there was an alternative too. Tamoxifen is not a good option for me due to gynae issues so I was put on zoladex to put me into menopause and then letrozole. I managed 3 days on the first attempt of trying it and then had the most horrendous vaginal bleeding which the gynae can’t explain. I’ve now been back on the letrozole for 2 days and feel so stressed because I’m terrified the bleeding will start again and also because the letrozole makes me feel depressed. I felt reasonably ok whilst just on the zoladex. I feel caught between a rock and a hard place. I too would be interested to hear of any alternatives.
Hello Helm,
It sounds like you have been having a rough time with your oestrogen blockers. I did too but one year on I have finally be prescribed the most effective pain medication to enable me to continue taking Anastrozole.
I do not know how old you are and whether you are post menopausal but as your oncologist swapped you to Letrozole I am guessing you are post menopausal.
Like you, I started on Tamoxifen but the s/e’s were horrendous (permanent body overheating/vivid bad dreams) so my oncologist switched me to Anastrozole.
The alternatives your GP could prescribe are Anastrozole or Exemestane.
Tamoxifen blocks the oestrogen getting to breast cancer cells only whereas Letrozole, Anastrozole and Exemestane are systemic aromatase inhibitors. They significantly reduce the amount of oestrogen in your whole body by inhibiting the production of aromatase, which is responsible for converting androgens to oestrogens.
To be honest, you may find that all of these drugs give you s/e’s. Our bodies are finely tuned and any hormone therapy disrupts how it works.
There are women who have no s/e’s with hormone therapy but unfortunately there are a lot of ladies that do suffer as you will see from the posts on this Forum.
From my own experience, I had to really persevere for at least nine months and work with my GP to find a solution to ease my pain and reduce the number of sleepless nights.
I wish you all the best in finding the hormone therapy that suits you the best.
Good luck, Helm.
Peace and Positivity,
M x
Instead of tamoxifen, which inhibits estrogen, I tried eating cruciferous vegetables, which accomplishes the same thing without side effects, lots of fresh juicing, sleeping, etc. That was 6 years ago after having stage 3 cancer.
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.
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.
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 ?
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.
Hi. I wasn’t on letrazole and I’m post menopausal. However, at my surgical review I was taken off Anastrazole due to joint pain and having a couple of weeks break before I start Exmestane, which the surgeon said has less reported joint pain. I don’t know if it’s ok if you’re pre menopausal. However, just 2 weeks off Anastrazole and my joints are much happier!
Hi ladies,
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.
Jaci
Wow! Some interesting reading here. I changed from the Tamoxifen to Letrozole quite a while ago. I thought the tamoxifen was giving me bad cramps in my legs so after doing blood work again the doctor put me on the letrozole. I have always had bad knees and I have no cartilage left in either knee. I am awaiting knee replacement surgery in May. I have been hurting so bad thinking it was the bad knees, now I’m beginning to wonder if most of it just might be from the letrozole. I do know the knees are bad and there is no cartilage, there is also family history of the bad knees. I think I’m going to talk to my oncologist regarding the letrozole and see if I can take a break for awhile to see if a lot of this pain I’m feeling will go away. I can’t sleep at night because of the knee pain and I’m barely walking right now as well. Almost makes me wonder if I need to do the surgery or not. However my orthopedic surgeon has showen me my x-rays and said which one do you want to do first.
Jaci I am really interested to hear that you are consulting a Functional Medicine practitioner. I found out the chemo has caused osteoporosis in my spine & hips & I just don’t want to take loads more pharmaceuticals with vile side effects & questionable benefits, as only just finished herceptin. I am seeing a FM doc as well. The way they go about trying to balance all your systems is so interesting. He gave me a book to read called the Delusion of Disease. It was beyond fascinating on the subject of cancer & other chronic diseases. I wish all GPs operated like this. xx
Hi wonderingwhattodo
I am almost a year post diagnosis. After 6 months I switched from Anastrazole to Exmestane with a 5 week gap in between. Those 5 weeks were glorious! My mobility, mood and energy shifted back to “me”. I started exmestane full of trepidation. The first couple of weeks I had a real dip in mood. However, I persevered and can honestly say things have improved. There is some tiredness, more flushes etc, but all are bearable. So far so good joint wise too. That said, being me was so lovely, I had been weighing up not taking medication and risks. However, a few weeks ago I found a lump. Luckily all was fine but the fear was awful and it made me realise I want to take this little tablet. X
It is worth looking at marniclark.com as she offers very good advice for alternatives and is a breast care coach having also had breast cancer herself. X
Exemestance is more expensive but its side effects seem to be milder than letrozole and tamox .
Its used in conjunction with a affinator for secondaries as well and is very effective for many ladies too.
I was a bit worried about the price, as exmestane was £90 per month, but apparently now off licence at under £2 per month. Anastyzole as lovely Rubycat calls it is 69p. It is remarkably kinder for me x
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
Hi Loulou,
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.
ann x
Prayers for all of you that you find the right solution that aligns with your heart. Listen to your intuition ladies.