Side effects of Letrozole and Xgeva

[Peggypilot]

Hello my fellow travelers,

I have been on Letrozole and Xgeva for about 3 months. I haven’t started Verzenio yet…my choice.

For last week I have had bone pain, stiffness and general flu like symptoms. Tested negative for Covid. I have awful hot flashes from Letrozole but I expect that. Anybody else have these side effects??

I am so grateful for all the feedback on this site. I am also thinking of changing my oncologist as he is not willing to listen and simply says he is the captain of the ship and I should not question.

Thanks again,

Peggy

[SabaAK]

Hi Peggy. My mom has been taking Letrozole and Ibrance for 15 months now. She has MBC with lung mets. Recently she feels extremely fatigue,neck pain,back pain that goes to her hands,flu like symptoms,muscle stiffness,joint pain. Her next scan is at the end of June and I’m kind of worried to be honest. I hope it’s medication side effects.

[Peggypilot in reply to SabaAK]

I hope so too but it definitely sounds like side effects to the drugs. I have been doing a little more research and the Letrozole alone can cause bone pain and Stiffness plus fatigue. I didn’t really expect to get it but I have and I hope it’s not here to stay😎Your mum is lucky to have you. Don’t jump to conclusions about new pains etc. they are mostly side effects of drugs but of course she should get them checked out.

All the best always..

Peggy

[NPmary]

I would recommend finding another doc who other people have had a good relationship with and of course is someone you trust medically. Your doc may be an excellent prescriber but if he tells you outright not to question - absolutely you should get a second opinion and switch docs. I have had to do this twice and my only regret is that l should have done it much sooner. Hot flashes, muscle aches, joint pain, stiff back, stiff joints, mild swelling of joints are all common and frequent side effects of letrozole. Do you have other symptoms you are concerned about?

You deserve quality medical care which should include listening, kindness, answering questions, offering needed resources. Take care, this is not easy, you are not alone. ❤️

[Peggypilot in reply to NPmary]

Thank you so much! Yes, I have had same side effects, didn’t start for 3 months though. I am looking at changing oncologist. You are correct; it’s not an easy journey and we are fortunate to have medical care. However, I really would like a medical partner on this journey. I’m sure they get burned out too. Thank you again.

[LadyKatarina]

I am on my 3rd oncologist in 4 years--and interviewed two others before I found #3. Passed on two that were also tyrants. We should all be involved in the decisions about our care, and deserve thorough explanations. Good luck in your search! Kay

[Peggypilot in reply to LadyKatarina]

Thank you…glad to know I am not alone.

[Hidden]

Hi thereYour Captain needs to walk the plank!!

Here in the Uk we don’t get much choice, but the ladies in the US often suggest different medical centres to find the right partnership.

All those side effects are common. My hot flashes have reduced over time and the joint pain and stiffness can be variable. I consider them mild annoyances as long as they are doing their job.

Keep on travelling

Clare

[RachH20]

Hi Peggy,

I am on same medication and get the side effects you are talking about, hard to not worry isn’t it though. If you have the chance to change oncologists I would look into that, I could not stand that attitude it’s scary enough and you want to be able to ask questions every step of the way. I have been so lucky with my team and my oncologist, she really listens and lets me ask away and it makes me feel a lot more calm and In control xx

[Peggypilot in reply to RachH20]

Thank you Rachel….yes, it is hard not to worry. None of us think we will be here!! I read a lot…my escapism , and I work as much as I can. 💕

[luckysmom13]

In the beginning I got injections of Lupron and XGeva monthly. I'd get them on a Friday, then spend all weekend with chills/sweats and body aches. This resolved after several months. Could it be XGeva for you?

[Peggypilot in reply to luckysmom13]

Good point…it’s hard to know..🙏

[TammyCross in reply to luckysmom13]

More likely the Lupron, hormone related, than Xgeva, which acts on the bones.

[DDIL1]

Hi PeggyFor 5 months I’ve been on Ibrance, Letrozole and xcheva. I am just checking off the list of side effects. I’ve had.. Rash, mouth sores, joint pain and most recently extreme back pain. I’m off an extra week of Ibrance and now the back pain is gone. So definitely side effects. With every ache or pain we worry something is wrong, the meds are failing. I know I do that every time something is different. How are we to know. I did get an MRI just to check my back since it hurt so bad and it showed improvement actually. As for the oncologist seek another opinion! I’m on my second one, and we started out shaky, he wasn’t listening, I’m an outspoken person so I had no hesitations in telling him to listen to me and respond as a partner. It’s my life and I want a partnership where you as my dr listen to me but I also will hear your thoughts. I did tell him that I will seek other opinions and he was fine. To that note I’ve been to 2 different facilities double checking my treatment plan. I have an appointment End of June with Mayo to talk about some things I want vs. the standard treatment of care. They reviewed my file and offered me an appointment! So being your own advocate is critical but exhausting. So much to read, learn then see if it will work for your situation. The word No is not acceptable to me without details behind it and then I’ll think about it. No one is the captain of the ship but you. I wish you All the best. Don’t worry to much as you see side effects are common. I hope that’s all it is.

[Peggypilot in reply to DDIL1]

🙏💕

[AvidBooklover]

Peggy is the pilot...and you deserve a co-pilot who listens! Definitely shop around.

[mariootsi]

I had horrible bone pain, stiffness and aches on Letrozole. Exercise helped. Even just walking. Felt like I had the flu for 4 years!You should always be able to question your onc! I suggest you look for another one!

[TammyCross]

Letrozole caused hip pain (as well as two kinds of rashes). Yesterday, my oncologist let me switch to anastrazole since I was having trouble with Letrozole. I was on Anastrozole 13 years ago for my primary bc and tolerated it well. After I switched, I learned that side effects of Anaztrozole are different for those with early stage cancer than for those with advanced or metastatic, and for those with advanced, the side effects are pretty much like Letrozole! So I might have accomplished nothing with the switch. Exercise did help with the bone or joint pain, but if I sat for a while, when I got up, I was in pain and stiff and lame.