I know everyone reacts differently to the various brands of letrozole but just wanted to ask - I have been on sun pharma for 3 years and last prescription order , pharmacy could not get it and gave me accord brand. Has anyone has balance issues when changing brands especially accord. ?Also seem to have developed neck and back pain ,not sure if this is coincidence as have had many side effects over past years anyway
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I had terrible aches and pains on Letrozole. I was mainly on Accord. I swapped to Exemestane which less aches and pains but still have hot flushes/ sweats and poor sleep.
This thread is very active and you might find others in a similar position to you.
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Hi I am taking 2.5mg of Letrizole accord.
My side effects are very similar to previous replies, Ben aches, arthritis worsening, depression, weight gain, not feeling great about continuing with this medication.
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Hi i have been on letrozole 2.5 mg accord brand. I constantly have aching joints and fatigue and hot flushes.
I started on Sun Pharma and all was fine. Now on Accord despite requesting SP. V bad joint pain in hips and I have regular waves of nausea too. I believe Accord is the standard brand most pharmacies dish out. I walked round every single local pharmacy and none were able to get Sun Pharma - my suspicion is that its more expensive!
Hi there Loti, I’m sorry to hear you’re suffering too.
I also am suffering terrible neck pain/aches. I’ve been on Letrozole since early March & the neck pain started at the top of my spine which now radiates all around the right side of my neck, my ear, lower right jaw & either side of my throat. It’s frightening me to be honest but my Oncologist just sits, smiles & listens.
Just awful side effects sadly
I hope your pain eases for you XX
Hi I had the reverse. Was given Sun Pharma and preferred Accord. Shortage of Accord meant I had a 2.5 weeks wait but I order in advance of needing it now. I think we are all so different.
I was advised not to touch herbs or alternatives.
Letrozole is the only thing I have between me and my now advancing stage 4 metastatic breast cancer (bones / lungs)
Ribbo …made me collapse (13 hr A& E visits) as impacted on liver/ kidneys. I’m too far advanced to have radio or chemo.
Pains…yes I have them but had arthritis from toes to head anyway. Annoyingly.
Letrozole has allowed me to live another 23 months… as stablised my mets… so I can put up with aches pains, bad sleeping, feeling down at times and just enjoy life as full as I can when I can.
Over 50s disco, pilates, mahjong classes (new venture for me), exercise classes, knit & natter, book club, socialising with friends and I managed to travel uninsured to Australia earlier this year for 8.5 weeks to see my family as no one will insure me! I do recommend travel insurance if you can get it!
I’m now retired and do struggle but I’m so grateful for my early NHS treatment as it was nearly 27 years between stage 2 and stage 4.
So here I am grateful for the prolonged life and wishing I could tolerate drugs better.
But ‘Hey Ho’ live life to the full you lovely people out there – as much as you can-- for as long as you can.
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Sorry to hear about the advanced stage but positive to hear mets are stable - long may they remain so!
Just on travel insurance my local Maggie’s (charity) holds a list of current insurance companies that insure folk with cancer etc. Maybe just good to know just in case it’s worth seeing if they have anyone new that insures.
Wishing you prolonged stability and a full life!
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Sorry to hear your cancer has progressed but it’s good to know how long it took, for the rest of us that worry about it.
BCN did a speakers live about travel insurance it’s on YouTube with this company.
Also others on the forum have recommended these insurers.
Hope it helps anyone.
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Thank you we don’t have Maggies here we have Big C and
Starthrowers. Both very helpful. My bank, last week refused me travel insurance once again ( a year later) but were excellent at providing comphensive links to other sites. I’ve loads of names of insurance firms that might insure when you have cancer I’ll start a trawl through once again but will check my list against your suggestions.
However, there are plenty of things to enjoy without going overseas. Sadly, my family live overseas.
I am pleased that my longlevity has inspired you. My auntie lived for 39 years after her cancer and breast removal. She was my inspiration. She died at 89 due to old age.
Thanks. J
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I know of a lady who was diagnosed in early 40s had breast removal and Tamoxifen for a short time, she is still going strong at 79.
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Thankyou so much for all the replies to my question about changing brands of letrozole.
I know people who have and are going through this know exactly what it feels like .
It is always difficult to know if the change in brand is the cause or just the letrozole itself whatever the brand - causing a deterioration in my neck and back as I know I have some arthritis anyway. A bad period that hopefully will improve !!
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Hi I was on Cipla which made me feel very achey and tearful. I have now been on Accord for a month and think the side effects whilst still there aren’t as bad. Very weird you talk about balance though, I went on a 4 hour boat trip totally calm and ever since then I feel as though I am very gently swaying all the time (even though I’m not!) . Has anyone tried Femara or is it impossible to get hold of?
Thanks.
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Hi does anyone think dizziness and nausea has anything to do with side effects from radiotherapy. Mine started just after which was in June and still have it.
I’m supposed to start letrozole once we get my blood pressure under control. I was on anastrozole initially. Side effects were too much. Then switched to exemestane and while the hot flasshes, night sweats and seepless nights improved, the side effects of uncontrolloed bp, high cholesterol (never a problem in the past) and higher glucose than ever before in my lifetime (74 years old) made it clear (to me) that medication was not for me. I’m really unsure about starting letrozole. Anyone else have a similar journey with these medications? thanks, jo
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