Letrozole

[Discolove]

Hi everyone, I just wondered about the side effects of Letrozole. I had 7mm bc removed via lumpectomy, due to have radiotherapy soon, no chemo required. I am really struggling with the possible side effects of this drug. I know we are all individuals but just wondered if side effects are as hideous as I'm imagining?

[JMMK]

I'm on letrozole and have been for about a year now and I seem to tolerate it well,the only side effect is the joint pain but I take clartin and that seems to help.Good luck with it 🍀

[Discolove in reply to JMMK]

Thanks JMMK x

[Crazycocker in reply to JMMK]

Hi JMMK,

Am I right in thinking that clartin is a antihistamine?

[Adamskd1 in reply to Crazycocker]

Hi, it is, but for some strange reason it helps with bone pain.😄

[Crazycocker in reply to Adamskd1]

brilliant! I have been on letrozole for nearly 3 years and am coping really well other than bone pain. I do have mets to the bones, but I’m sure a lot of it is due to the letrozole. I’m going to give it a go! Thank you 😊

[Adamskd1 in reply to Crazycocker]

The funny thing about this conversation is that I forgot about the Claritin, and was wondering why my bones were hurting. To be honest, I has stopped taking my meds (Letrozol - don't ask why - don't have a good excuse 😜) so when I started back taking it, I noticed bone pain. I was like what is going on. You all just reminded me that it's a side affect from L. So, THANK YOU! Got to get back on Claritin. ❤️

[Crazycocker in reply to Adamskd1]

Hope it works and helps with the bone pain again for you, and glad your back on it ❤️

[Adamskd1 in reply to Crazycocker]

Thanks, I am trying to be good!😍

[Stoli]

I have been on Letrozole for 7 years. I am Stage II BC survivor and was told to as long as I tolerate it I will be on it for 10 years. I also had IV chemo & radiation in 2015 and from that developed neuropathy in feet & hands and I think the long term of Letrozole has contributed to that, I do take Gabapentin at night and that does relieve the discomfort. So far bone density tests have come back good so I am very fortunate for that. Initially I was fatigued but that was not long lasting, Just pay attention of any symptoms and let your oncologist know in case adjustments have to be made, Good Luck

[Discolove in reply to Stoli]

Thanks Stoli x

[Red1246]

I understand your anxiety and have been on Letrozole abs Ibrance since 2019 for metastatic breast cancer. Hard to know to which drug my side effects are attributable but I have few.

Low wbcs (definitely the Ibrance), occasional fatigue and in the beginning mouth sores and a body rash. There were fixes for anything I exietienced though and I’m lucky enough to lead a mostly pain free and fairly normal life.

Hope you’ll have little or no issues with it. We are indeed all different in our reactions to these meds.

[Discolove in reply to Red1246]

Thanks Red1246 x

[Melpub]

I had stiffness in my hands and feet Pointed and flexed the feet; did wrist rotations with the hands and got porcupine balls (the rubber things with soft spikes) to squeeze with my hands and roll under my feet. Got as much exercise as possible

[Discolove in reply to Melpub]

Thanks Melpub x

[Kayaker82]

I’ve been on Letrozole since Spring 2021. I didn’t notice any side effects right away, but then developed some stiffness in my feet in the mornings when I got out of bed which continues. I’ve also developed stiffness and slight tenderness in my wrists. None of it keeps me from doing what I want. Just keep your body moving!! I’ve also been on Ibrance for one year. I’m willing to put up with the Letrozole side effects for the protection it offers. Wishing you all the best in your journey.

[Discolove in reply to Kayaker82]

Thanks Kayaker82 x

[KarenandLinda]

Hi there, sometimes the worrying can be worse than the actual happening. I’ve been on Letrozole for about 18 months initially with Ibrance but because of low blood counts now only take Letrozole. I manage to tolerate it well I think the worst side effect is the joint pain but with gentle exercise and a bit of yoga my life is still the same. Hope this helps

[Discolove in reply to KarenandLinda]

Thanks KarenandLinda x

[Jessie55]

no side effects … I’ve been on it a year

[Discolove in reply to Jessie55]

Tanks Jessie55 x

[Lillysue]

I have been on Letrazole for 18mths. Once I found a brand that suited me it was fine. I have had dry eyes nose and skin. Some brands caused awful bone/joint pain. Good luck.

[Discolove in reply to Lillysue]

Thanks Lillysue x

[Ange137 in reply to Lillysue]

What brand do you take?

[Lillysue in reply to Ange137]

I now take Glenmark. Sun Pharmaceutical was sort of OK although did have some joint aches. Accord was awful and affected me really badly.

[Justme153]

This is my 5th year on letrozole i dont feel i have any side effects. I am 65 and farely active ( try to get 10,000 steps a day) some days its less some days more. I truly believe keeping active is a key to fewer side effects!

[Discolove in reply to Justme153]

Thanks Justme153 x

[Sharonpat]

I want to know this too as I’m due to start this in about a month and I had dreadful side affects with chemo

[Discolove in reply to Sharonpat]

Thanks Sharonpat x

[Hidden in reply to Sharonpat]

I have been on Letrozole since August 2022, I get some back and neck pain but I do have spine mets. No other problems so far, thankfully.

[Discolove in reply to Hidden]

Thanks Ensbury133 x

[JKMS]

I have been on Letrozole since 2020 and zero side effects and most people I have met tolerate it very well. And as people have said any side effects can be very well managed so please don’t worry 🙏🏻

[Discolove in reply to JKMS]

Thanks JKMS x

[Knickerleg]

Letrozole seems to affect everyone differently, I have been taking it for a year now and things seem to have stabilized. I get aches in my joints and spasms in my calf's occasionally which feel like I've had bad cramp. Don't let your imagination run away with you as you could be worrying about nothing, be practical and keep notes.

Log what brand you are taking and the dates you started then write down your symptoms.

Stick with it if you can as some of the side effects will go after a while.

Stay positive and good luck.

[Discolove in reply to Knickerleg]

Thanks knickerleg x

[penpen18]

I’ve been on Letrozole and IBrance since August 2021 with little side effects except achy joints and dry eyes when I wake up. I have stage 4 MBC and it’s in my bones. I totally agree with the try not to “worry about every ache” comment. It’s hard not to. Staying active and yoga helps. Hang in there!

[Discolove in reply to penpen18]

Thanks Penpen18 x

[mariootsi]

When I was taking Letrozole the joint pain was difficult especially waking up in the morning. Walking helped and stiffness lessened as I began moving around. Fatigue also but that comes with every treatment . I wish you luck.

[Discolove in reply to mariootsi]

Thanks mariootsi x

[PJBinMI]

Lists of side effects can be scary! But drug companies are required to list side effects. even the really rare ones. And as others have said, we each react differently to each med, one of the things that makes cancer so difficult to deal with. I'm a long timer--bone mets from the get go. Today marks 19 years with mbc, and Letrozole was the first med I was on. I got just weeks short of 5 years from it. The only really bothersome side effect I got was intense hot flashes. My wise old onc prescribed Effexor ER for those and that worked well. I was already on Celebrex for arthritis and it may have helped me avoid joint pain. Some of us with Estrogen receptor positive mbc do really well for a long time, and we're living longer than when I was first diagnosed. I hope you'll do well for a long time,too!

[Lulis in reply to PJBinMI]

19 years! Wow, that gives me so much hope! Thank you for sharing.

[Discolove in reply to PJBinMI]

Thanks PJBinMI x

[Hidden in reply to PJBinMI]

Wow that has given me hope too.

[1glajon in reply to PJBinMI]

19 years wow!!!

[lovnmycat]

I’ve been on Letrozole and Ibrance since August and at first I suffered from extreme fatigue a little nausea, dryness and joint pain.It took about 4 weeks or so but then symptoms got a lot better. Dryness also went away (took a little longer but not a problem now) I take mine after dinner.

Good luck to you on this journey.

[Discolove in reply to lovnmycat]

Thanks lovnmycat x

[morty87]

I have been on Ibrance and Letrozole since Jan 2018. I've had excellent results. I did feel the side effects but as with any new drugs over time you become used to them. I take a daily claritin to help with the joint pain.

[Discolove in reply to morty87]

Thanks morty87 x

[Red1246]

I wanted to add to my initial response that it’s crucial to drink a lot of water daily. These meds are very hard on liver and kidneys and need flushing. I’m not a big water drinker by nature so purchased a 32oz bottle with straw from Amazon. It lists quantities per hour and when you finish it, it’s time to refill. On a good day I get through two of these but I supplement with soups and other liquids.

I’m glad you’ve had so many responses and see we’ve all done pretty well on Letrozole. My biggest fear after diagnosis was side effects. Somehow terminal cancer didn’t frighten me as much as being incapacitated or in pain from meds so I do understand your angst. Hopefully now your fears have lessened. 🙏🏻

[Discolove in reply to Red1246]

Thanks Red1246 x

[sancarlos]

Hi,

For 25 years I was just taking Letrozole, with no problems. I am now on Letrozole and Ibrance for the last 5 years. Ibrance has definitely been harder on me.

Good luck!

[Discolove in reply to sancarlos]

Thanks sancarlos x

[sonycamera]

HI. Letrozol and Ibrance combo works well for me. This is year 3 for the combo. My third recurrence in of breast cancer in 2021 then became diagnosed as metastatic. Even on my week off of Ibrance when I take only letrozol has no side effects. Little inconvenience for big benefits. Wishing you well. Hope this helps. Kathy

[Discolove in reply to sonycamera]

Thanks Kathy x

[Enie in reply to sonycamera]

I was on Letrozole for 3 1/2 years with hardly any side effects . One morning I woke up with severe joint and bone pain.I could hardly get out of bed it hurt so bad to move. I wasn’t on this site back then so had no idea what was causing it. Finally my doctor switched me over to Exemestane and it took about six months for me to get back to it not obeing in pain. I still have soreness in my fingers but nothing I Can’t live with.

[TammyCross]

You are getting very good, fear-alleviating comments. As people have noticed, we all have different reactions. My hips hurt really badly on letrozole. Claritin made me feel like a zombie. I switched to anastrozole. (I was on Arimidex, the brand name of anastrzole, for five years after my original breast cancer and had no side effects. Now I do. Go figure.)

The only thing to do is to try it and see how it affects you. Maybe it won't, but if it does, try remedies and alternatives. Definitely moving helps.

[Discolove in reply to TammyCross]

Thanks TammyCross x

[Smokeyd]

Hi, I have been on Letrozole and Ibrance for just over a year for MBC ( mets in bones). I do have bad arthritic/joint pain, especially when waking up. I take a low dose oxycodone 5mg for it, which helps, although it's still there but manageable. I had not heard of taking Claritin for that so I will try it and hopefully won"t have to take the pain meds anymore. I'm surprised the nurse or onc does not suggest this! All the best, hoping it's smooth sailing for you!

[Discolove in reply to Smokeyd]

Thanks Smokeyd x

[Enie]

I was on it for three years before the joint and bone pain kicked in. My whole body hurt. It got a little better as the day went on but every morning the pain was back. My Oncologist switched me to Exemestane. It took about six months to feel almost normal again. Now I just have slight pain in my hands and shoulders.

[Discolove in reply to Enie]

Thanks Enie x

[Enie in reply to Discolove]

I just realized I posted this twice. Chemo brain lol

[Ange137 in reply to Enie]

Is Exemestane as effective as letrazole?

[viennagirl]

I have been on Letrozole and Ibrance for over three years. I am not sure how my reactions to the drugs can help you because it is hard to know what each drug is actually doing. I am not the scientific type so just let the Oncologist make the decisions for me. And now she has me on now 75 mg of Ibrance and one Letrozole pill daily. I don't know how these drugs work together or just how they affect me except to say that I am on a 21 days on and 7 days off of both drugs.

My side effects are minimal. But I do have some numbness in my feet and some muscle cramping. But don't know which drug is causing that condition. Other than that I feel quite good and my scans are coming back clear. I never had any of the mouth sores or rashes that some people get but my hair did thin out a great deal. And I did not have thick hair to begin with so I was really sad about the hair loss. On the advice of a friend I started taking Natures Bounty Skin and Hair product that I buy from Costco. I noted that it has biotin in the list of ingredients.

I take two Natures Bounty gummies per day. Within four months my hair stopped falling. Then it started regrowing some of my lost hair. So happily I have regrown some of my hair. My friend and her daughter in law say they have grown so much hair on this product that they stopped it for a while. I think I will continue taking Nature's Bounty for as long as they make it. I am grateful to whoever designed this product. It was a miracle cure for me. I have never had thick hair but to be able to protect and regrow hair has been a god send to me.

So I think you should confidently take the Letrozole and keep a diary of the side effects you are having. Then report this information to your Oncologist.

I hope at some point to go off all the medications. Maybe that is just a pipe dream but it is my wish. I think if I keep getting clear scans I should be allowed to stop medications. But so far my Onc is keeping me on the meds. I am taking supplements - like vitamins and I intermittent fast for about 15 hours per day. I eat my last food of the day at 8:00 pm - then take my cancer meds - and do not eat again until 11:00 a.m. I think it makes me feel good and helps my energy level.

I am also a bit addicted to chocolate. But I take only the dark chocolate and I believe it helps with my health. According to Dr. Li in his book Eat to Beat Disease he says chocolate is a super food. Other than that I eat everything - some meat and lots of veggies and a very small amount of gluten foods. Not much in the way of alcohol but I feel good and usually have lots of energy so I think I am doing good things for my health. I hope this information can help you with your concerns. Just remember to make note of the side effects. Hugs Marlene

[Discolove in reply to viennagirl]

Thanks Marlene, I have very fine hair and have been worried about hair thinning, so I will certainly give Nature's Bounty a try x good luck on your journey x

[viennagirl in reply to Discolove]

Yes, give it a try. It is easy to get this product if you are near a Costco. You might even be able to order it on line. I just pick up Natures Bounty in our local Costco store. It might take four to six months to get results but my hair seemed to stop the falling very quickly. It took longer to see new growth but I did eventually grow back quite a bit of my lost hair. Best wishes. Marlene

[Andersl]

I understand your concerns. I was on Letrazole for a few months but had horrendous side effects. I looked up and read many research papers. I read that there is some benefit for those who are still menstruating but there is very little benefit for post menopausal women. Consequently I came off it.

The consultant didn't try to persuade me otherwise.

I'm not recommending you dobthe same as I did. Read all other views here too.

[Discolove in reply to Andersl]

Thanks Andersl xx

[Lavern2]

Hi from East Texas i had a Lumpectomey and 8 lymphnodes removed in June 2022 i was started on Letrozole 2.5 two months before sugery. And I Had a zometa infusion after sugery. I had 21 days of radiation. I finished it the week before Thanksgiving. The side affects i had from Letrozole were sweats and hot flashes and fatigue. also weight gain. And the radiation causes low energy also i had a bad skin burn. But all is better now . I was scared too but by the grace of God and talking to people on this site and others I know have helped me deal with all . Stat taking vitamins if you are not. I take vitamin D3 5000mg, emergen C with zinc, B 12 500 mg and 50+ centrum silver multi . Helps build your immune system back up and your body. Its a long road to feeling better. Take care and I will add you to my prayers.

[Discolove in reply to Lavern2]

Thanks Lavern2 x

[TwithBC]

hi! Been in Letrozole for 6 years — some “times” there has been weird joint pain — where I was scared — but I have come to totally adapt and to thank God for this drug … it put me 5 years and counting NED … feet, arm, wrist, shoulder pain—experienced all—but goes away… and comes and goes … but man it’s really nothing … best best best to you!

[Discolove in reply to TwithBC]

Thanks TwithBC x

[viennagirl in reply to TwithBC]

Thank you for sharing all the names and doses of the supplements you take. I will add a couple of them to my vitamin regime. I recently added salmon oil tablets. The provide Omega 3. I wish you the best on your journey. Hugs marlene

[Fpmeehan]

I had muscle aches while taking letrozole. My oncologist prescribed a generic form or Clairitin (loratadine) for to ease the aches.

[Discolove in reply to Fpmeehan]

Thanks Fpmeehan x

[Ldonovan481]

hello

I am supposed to be taking Letrozole, I had 8 mm bc, and I am holding off. I have osteopenia, and I can’t afford to have any fractures, which is a side effect, one side effect of this drug. The other side effects are no better…….I had chemo and radiation, now every3 weeks a “ infusion” threw my port, Herceptin. I am not positive if I will do the Letrozole…….I will meet with Brest surge. Next month, July, however, I really don’t think I will end of taking it for 5 years……….so many ppl did NOT have chemo for similar incident. ( I really don’t trust medical community, I have excellent health benefit. )

[Magic_midlife]

Hi. I know everyone’s experience is different. However, I do think we should be spoken to about what we may experience. I had my op last July and radiotherapy finished in November. I can’t believe the side-effects I’ve experienced. Hot flushes in the night are intense. I’ve gained a lot of weight. When I stand on the floor first thing in the morning, my feet ache and I feel nauseous. I’ve just been told by the doctor, I have high cholesterol- despite having a fantastic diet. I’m not usually negative about things, but I do think we should be helped to manage symptoms.

[NeverOutOfTheFight]

I did great on it for 4.5 yrs. Just switched in May after developing an intolerence. Starting feeling achy and fatigued in January, and switched in May. All good now.