I have been on Letrizole for over a year and just can't tolerate the side effects any longer Extreme weakness, fatigue, and dizziness to name a few. My onc wants to change my medication to Tamoxifen even though she feels Letrizole is the better choice.
Have any of you gone from Letrizole to Tamoxifen? And did you have side affects?
Right now I feel like I have no life. I don't have enough energy to make the bed
I had been on Ibrance too. Went from 125 mg to 100mg then 75 mg. I couldn't tolerate that either So I was taken off it.
Any comments about your experiences would be appreciated.
Patricia
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Gram10
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I'm sorry to hear that you are finding letrozole so hard to tolerate. Before you change to tamoxifen though, could your oncologist look at ways to help you deal with the side effects of letrozole? My oncologist was going to put me on tamoxifen when I first started treatment, but she chose letrozole instead. An anti-inflammatory may help with the aches and pains. Or how about some gentle exercise, Epsom salt baths and massages? These can all help with the pain you are experiencing. I had some aches and pains to begin with as well, but they went away.
Your quality of life is really suffering, so I hope that you will soon get relief from all of these side effects you described.
I don't think this is going to be very helpful so I apologise.
I had a year on tamoxifen before my mets diagnosis, I found the side effects very hard to deal with. And my oncologist treated me as though I was exaggerating. Changing the manufacturer and time of day I took it helped. But apparently most people tolerate tamoxifen well, I was just different.
After my mets diagnosis I was put on faslodex and ibrance and had very few side effects. Then because I returned to the NHS where faslodex isn't allowed as a first line treatment I had a month on letrazole. After 4 weeks I went back to the oncologist with a a4 page of side effects - mental and physical. I said that I couldn't continue living like that. He agreed to put me back on faslodex due to intolerance of Letrazole.
Both with tamoxifen and letrazole side effects improved with 24 hrs of stopping the drugs.
I had returned to my pre diagnosis me while I was on faslodex and ibrance 125mg but unfortunately after 18 cycles, it stopped working and I had progression to my liver.
I think what I'm very clumsily trying to say is that everyone reacts differently to the drugs we are given. What makes one of us feel like death warmed up means relatively normal life for someone else. I asked my oncologist if there is any way of predicting how a drug will affect us and his answer was no, the only way is to try it. He was very clear that his main concern was whether the drugs gave me progression free survival and I pointed out that without quality of life this was academic. So we have a constant balancing act, how much of our quality of life are we prepared to sacrifice for progression free survival if the drugs are effective.
I'm really sorry if this sounds too blunt, I'm just not feeling well and am struggling with getting my thoughts across well 😊
I appreciate your honesty. Tamoxifen also presented problems for me. I also tried switching manufacturers and eventually stopped taking it. I was NED and off everything for a few years, but then ended up with bone mets. I was on Ibrance and Faslodex and had breakthrough to liver and it changed type. YES, we all react differently. It's great to find commonalities when we share info on here though. Makes me feel less like the odd one out.
I was supposed to be off tamoxifen for 6 weeks to enable the oncologist to get accurate blood tests for my hormone levels. But I got lost in the system and couldn't get an appointment to see her so I was off meds for around 3 months and then the orthopaedic consultant found the bone mets when the gp had diagnosed arthritus and told me to lose weight.
Yes, I've learnt so much about the different meds on this site and it is so good to talk to others going through the same experiences, it's horrible feeling so alone when you are first diagnosed. This site is my sanity 😊
Thank you Julie. You have really helped me in making a decision. The fact that you were on Tomoxifen when diagnosed with MBC is disturbing. It was recommended that I take it following my 2nd breast cancer but I declined. I felt like cancer had been removed with the lumpectomy and stupidly thought it wouldn't come back a 3rd time. After 11 years it came back with a diagnosis of MBC in my ribs. I'm not going to take any more chances. I'll try a few weeks of tomoxifin to see how I react to it. If bad side effects, I'll go back on Letrozole.
This forum really helps when going through a tough time.
Don't forget I'd actually been taken off the tamoxifen for 3 months when the mets were discovered, but I suspect that they were actually there before I finished treatment for the primary breast cancer and the tamoxifen was keeping it in check. When it was stopped then they progressed.
Not all drugs work for everybody and sometimes it's a matter of swapping until you find one. Thankfully there's a choice.
Hello Patricia. I was on Letrozole (Femara) for 5 years after my initial diagnosis. I was still on it when my mets to lungs was diagnosed. I didn’t experience bad side effects with Letrozole but had to stop because I had mets. What if instead of Tamoxifen, your onc tries you on Arimidex. I know it’s the same class of drug as Letrozole but as Julie rightly said, each of us reacts differently to the same meds. I know that some of us tolerate Letrozole better than Arimidex and vice versa.
I was on Letrozole when I didn’t have mets yet. It was prescribed after chemo to prevent recurrence. However, I did get recurrence (mets) so that means Letrozole didn’t work for me anymore.
You might give yourself several months to see if side effects subside or lessen, if you can manage it. I'm on Letrozole and Ibrance and the first few months were hard. Each month I seemed to lose a side effect, sometimes got a new one, but eight months later my body seems to have adjusted.
Tamoxifen was bad for me. Letrozole is better in my opinion but I still deal w side effects. Bone pain, fatigue, hair loss and thin, very dry!!!, bloating in the afternoon, but tamoxifen did make me feel depressed and I didn't want to get out of bed. I am on Ibrance 75mg but the doctor maybe change..... due to my blood count
Arimidex is very similar to Letrozole and some of us have fewer side effects from one or the other, so some oncs will switch those two meds around -- ask your onc about that. Effexor works well to control hot flashes, and I've found that the Celebrex I've been on for years pre cancer for arthritis pain controls any AI pain. Being sure to drink plenty of water is really important to us, too. I've considered an "exceptional responder" meaning that I have lived with MBC for much longer than most do -- over 15 years--but I gotta tell ya, it's crazy, but I am on more meds for side effects than for cancer! even meds for side effects of side effect meds. I take 17 pills a day! Not counting calcium, fish oil, turmeric, vit B. But I am alive and don't have pain from cancer. I don't get as much done as I used to, but I'm 73 and probably wouldn't be as active as I was 15 years ago without cancer!
I’m 72 and have days when I don’t get much done and then wonder if it’s the cancer or my age. Unfortunately there is no real way to know, but it’s good to know others feel the same way!
I think about my grandma! lol She lived to be 102 and had still been planting a garden into her early 90's! She'd been treated for endometrial cancer in the 1950s when she was in her 70s! Old farm wife--used to hard work and eating butter, whole milk, lard, beef, homemade everything. Her life was sure different than mine! And of course it never occured to me as a young woman to ask her the questions I'd ask now! But she did develope some dementia and I would not want her last ten years!
I had horrible side effects on Letrozole, both mentally and physically.
My onc put me on it after my treatments were complete for my first cancer diagnosis because I was post menopausal. Took it for almost 5 years til my mbc dx.
Alot of depression and terrible aches which lessened with excercise.
I pray God will help you through this challenge, and provide a treatment that will not cause the difficulties you are now experiencing. I pray God will allow you to regain your peaceful, and comfortable quality of life. Amen, amen, and yessssssssssss amen. I take 2 natural anti-inflammotory/anti-histamine capsules daily, for multiple airborne, and food/liquid allergies. Yesssssssss I am the girl who should live in a bubble. I hear a lot of women, on this site saying they were using Benadryl, Claritin, and natural anti- inflammatory's. to help with intolerable side effects from these cancer drugs/treatments. Please make sure anything designated natural has no contraindications with prescribed drugs you take. God bless you sister/warrior . I know it is easier said than done, but try to push through to fight another day, week, month, and year. Amen XoXoXoX We need a cure yesterday
this body did not tolerate Tamoxifen well, with the initial diagnosis in 2011. was NED with every check up and took myself off of Tamoxifen in 2014. was told stopping Tamoxifen had "nothing to do with" the metastatic diagnosis.
with the metastatic diagnosis in 2015, was put on quarterly Lupron injection, Ibrance 125 and Letrozole. i switched from Letrozole to Anastrozole 1mg and Ibrance 75mg.
in reflection, i would have skipped the Tamoxifen and gone straight to Lupron and Anastrozole. and, i was not thinking about recurrence or metastases as a possibility.
So very sorry you are having such a difficult time. I can 100% relate. I am on Ibrance/letrozole, (it will be 5 years in February), the 125mg dose. I am beyond fatigued much of the time.
My oncologist has started monitoring my vitamin B and D levels, both were very low. They have started me on monthly vitamin B injections and I have increased my oral vitamin D supplement. I try to eat as healthy as possible without depriving myself of things i love (chocolate 🙄, in moderation, lol). Has your oncologist recommended any dietary changes, are you taking vitamin supplements? Our clinic even has a physical therapist who specializes in cancer patients suffering from fatigue. My sister also has cancer and she juices and swears by it. Something to keep in mind is that the Tamoxifen will have side effects also, I've been on it. That was 18 years ago when I was working full time in a critical care recovery room and I could not tolerate the fatugue and muscle aches.
I hope you feel better soon. Ultimately it is YOU who knows how you feel and what your body can tolerate or not.
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Tamoxifen for a second time . 
