I’ve been on Letrozole now since about early March. What an awful medication it is for side effects
I have breast cancer & bone cancer. Lobular Breast Cancer really does creep up on you sadly. It can take a long time for a lump to form in the breast as it generally grows in “strands” so often no lump is felt sadly until it’s too late.
My main suffering from Letrozole is the neck pain/aching/pulling feeling (odd I know) It started in the top of my spine originally but now radiates all around the right side of my neck into my ear, lower right jaw & all around the front, either side of my throat.
Then there’s the front of my ankle & wrist pain, severe hot flushes, severe exhaustion ohh & the cancer in my pelvis hurts a lot too sadly.
My Oncologist just listens but offers no reprieve sadly.
I’m not sure I can tolerate Letrozole for much longer to be honest.
It’s keeping us alive thank goodness but it’s really, really tough on the side effects
Hi, i had lots of issues as well with letrozole i had all the side effects but also my bp wasn’t settling so had a 6 week break and my bp came down. My surgeon then put me on exemestane and what a difference, have the odd flush and aches and pains but nowhere near as bad but what works for one may not be the same for another but maybe worth trying a break and a different one x
Hi @wackyny , happy to hear that Tamoxifen is helping! We almost have to be our own pharmacists through this… I think there was a reason I wasn’t given it, but with all the meds and surgeries and treatments, I have forgotten it now!
Hello @justturned50, not sleeping and overthinking is the worst. Can recommend Dr Guy Meadows the Sleep Book, there is also an app too. It is very helpful and common sense, and he has a nice soothing voice too!
Great username @madbatdiva! I’m really sorry to hear about the lack of sleep. I think ‘side effects’ is an understatement when it affects your quality of life like this. We definitely have to push for answers!
I don’t know about supplements specifically @andreag1, maybe worth posting the question on the nurses’ page on the forum? I don’t want to put you off - for example my sister takes Letrozole and apart from being a little achey and thinning hair has no side effects. People who tolerate it don’t come here to complain so I guess it gives a biased picture. For the first year it was not so bad for me. Hoping it is okay for you.
@MargotL
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Hi MargotL,
Thanks for your message. My username is a result of singing and starting off as a mezzo soprano, but now I’m a full soprano so get to learn all the “trilly -stamp your foot” arias. Great fun and as I can’t feel my feet I can stamp my feet a lot . I can definitely attest to the need to keep pushing for answers. I saw my old pain management consultant as my new GP can’t prescribe the lidocaine patches as the CCG don’t think they’re effective. The consultant had looked at my previous results of electrical conductivity and said he advised a Spine MRI before anything else to ease the pain. He requested the GP arrange this but they didn;t as they say it’s not their job and whilst they didn;t let me know, now they have suggested they refer me to the local hospital MSK clinic for a consultation and if they think it’s “clinically appropriate” they will refer me. I pointed out my neurologist and pain management consultant were world renowned in their field, but the NHS bureaucracy is what it is. Meanwhile, I’m in pain, my back is getting worse, and the GP wants me to see a junior doc to confirm an expert’s diagnosis. I’ve never wished for dual nationality as much as I do now. If you know any Vikings, put me in touch!! Re the herbal treatments, ask at the library if they have access to the world wide educational website. All universities are signed up to it and you can search all the research topics. You may find something on there; I’m sorry I cannot remember the name. Keep laughing.
I’m so sorry! Your experience makes me so cross, and feel like banging my head against a wall. I hope you get some pain relief and proper care and consideration soon. How wonderful to be able to sing though. I have a singing voice like frogs croaking xx
Hi, I’ve changed from Letrozole to Anastrazole to Exemestane, I’ve only been on the latter for a few weeks, but the joint pain is as bad as it was with Letrozole. Did you have a break between each therapy? I’ve just moved directly from one to another, so i’m not sure if my pain is continuing, or if its the same on the new meds! My oncologist isnt great, when I told her how awful the joint pain has been, she said ‘oh well’ and moved on! I’m considering coming off hormones altoghlether, but I dont know if they would allow me to continue with Ribo which I’ve tolerated really well. I wonder if a break might help. Thank you Metastatic breast cancer in bones, 51 (feeling 108).
Hi, I didn’t have a break between meds but there was definitely an improvement, particularly in my hands, with exemestane. We are all different and at different stages in treatment and disease progression. I think you just have to try different options to find what is right for you. I think that you also need to consider whether it is actually the meds causing your problems, so discussing a break with your oncologist might be the way forward to help you make decisions. If you are not happy with your oncologist you can ask to see someone else. I hope you find a solution x
I had an 8 week break between stopping Letrozole and starting Exemestane. I felt better between, less hot flushes and joint pain. The joint pain is there on the new medication but lessens off a bit as the day progresses. For me the hot flushes and night sweats are worse. Like others have said we are all individual and what is troubling for one isn’t for someone else.
I had a primary diagnosis and the protocol for a break may be different with secondary. Maybe give the BCN nurses a call and chat it through 0800 800 6000 m-f 9-4 sat 9-1
. I can definitely attest to the need to keep pushing for answers. I saw my old pain management consultant as my new GP can’t prescribe the lidocaine patches as the CCG don’t think they’re effective. The consultant had looked at my previous results of electrical conductivity and said he advised a Spine MRI before anything else to ease the pain. He requested the GP arrange this but they didn;t as they say it’s not their job and whilst they didn;t let me know, now they have suggested they refer me to the local hospital MSK clinic for a consultation and if they think it’s “clinically appropriate” they will refer me. I pointed out my neurologist and pain management consultant were world renowned in their field, but the NHS bureaucracy is what it is. Meanwhile, I’m in pain, my back is getting worse, and the GP wants me to see a junior doc to confirm an expert’s diagnosis. I’ve never wished for dual nationality as much as I do now. If you know any Vikings, put me in touch!! Re the herbal treatments, ask at the library if they have access to the world wide educational website. All universities are signed up to it and you can search all the research topics. You may find something on there; I’m sorry I cannot remember the name. Keep laughing.
xx
Metastatic breast cancer in bones, 51 (feeling 108).