I had breast cancer removed Aug 2013.  Started on Letrozole April 2014 for a year but because of aches & pains I got moved onto Anastrozole.  At first I thought it was better, but been on it now for over 2 years & I'm crippled with joint pain, shoulders, hips, knees, particularly left leg, foot deformed, bakers cyst behind left knee.  I'd asked consultant if I could stop it.  He said no & offered Tamoxifen, I said no.  2 weeks ago I went to GP who offered me a break for a month to see if there was improvement.  So I've stopped taking it.  I value quality of life.  My bakers cyst has reduced & hot flushes have stopped!  I've been cold.  Haven't been cold in over 3 years. In 2 years by bone density has gone from above average to osteopenia of the spine.  I know someone who has been on it for 6 years without any side effects.  It must affect people who are prone to arthritis.  My cancer was the most oestrogen positive you could get, but a risk I'm prepared to take rather than suffering.  Also had the insomnia & itching, take antihystamines to control it & constipation.  But prone to the latter two anyway.

Hi Shazbo, I took Herceptin because my cancer was her2 positive. It was my 2nd bout of breast cancer as a year after my first diagnosis they found it on my follow up mammogram!

I stopped taking Letrozole 7 months after starting it as I felt dreadful! I discussed everything with my Oncologist first though.  It was having such a detrimental effect on my quality of life that we both decided it was best for me not to take it.  

It is 2 years since my mastectomy this month and I still get pain in my breast and under my arm.  I do check in with my breast nurse whenever the worry takes over!  But after radio, chemo, herceptin and 3 ups I think its one of those things!

I take vitamin D, loratadine and turmeric with black pepper tablets each day.  The loratadine has been proven to help with bone pain after chemo and turmeric for the joints.

When my shoulders seized up the physio definitely turned things round for me so definitely push for that.  Ibuprofen also helped .

I am still a creaking gate at almost 53 but I am back teaching full time and have been since Sept 2018.  I pray every day and thank God everyday that I am where I am.

Keep going Shazby but get the help that you need.

Lots of love xx

Oh Shazbo, I'm so sorry you're going through all this at your age. I have found that 20 minutes a day on the exercise bike helps as it doesn't impact on your joints. I also do a range of physio exercises that take me about 15 minutes a day but they do help. I've started taking Omega 3 oils too along with turmeric and Accrete D3 to prevent my ostopenia developing into osteoporosis. A warm bath at night with some  epsom  salts in the water seems to help the pain a bit. I'm over 60 now but up to getting cancer was running miles and totally pain free. But I think it is almost manageable provided it doesn't get worse. Try the exercises and warm baths, I hope it helps. Best wishes

I tried a hot bath Friday night and I struggled to get out of it. I am on adcal for my oesteopenia and I pray it don't turn into oesteoporosis I a sleep at night I can't get comfortable everything is a uphill struggle iv been on my own many years now and very independant but this is frustrating as I hate needing help 

Hi, I don't know if this info will help as  I've only been taking Letrozole for 3 months so I'm not sure whether it's long enough for the pain to start kicking in on not, but I started taking Tumeric capsules the same time as the Letrozole and although I have a few dull aches it's nothing that I can't cope with, I do get the hot flushes though. I only mention this because before taking letrozole I suffered for years from crippling arthritic pain in my lower back, that pain has disappeared since taking the Tumeric & left me wondering whether it really has eased the side effects of the letrozole.   

Hi Ali49,

I realize that this is three years since you posted, but am replying in case you are still on it or for someone else coming to this thread now like me. I was diagnosed mid 2020, lumpectomy Sept, radiotherapy Nov, started the letrozole Nov too. By mid Feb I had so many side effects, painful joints all over, hands went horrendous, and both shoulder rotator cuffs were so painful, I had to get my husband to help me get undressed. Finally I was given a 6 week "letrozole holiday" in May. After 2 weeks I was in pieces, sobbing, because there was no improvement. But aound week 4, I realised my shoulders did not hurt anymore and various other pains had eased a lot even if not gone. The flushes/sweats dimished etc etc. I had an extra 5 days on top of the two weeks for a wedding (did not want to suddenly be a sweaty mess) and for the last two weeks of my break I felt a lot more human (almost normal!). I am back on it now and waiting to see what comes back.... But for anyone starting a break, don't despair in the first week or two.

Hiya Sailinglass....

Just read your post.... I've been on a similar journey...too scared to take a Letrozole break though....pleased to know however that the immense shoulder pain is just down to that pesky tablet....

I had lumpectomy in March 20 and radiotherapy in sept... started Letrozole in September..

Pain in left joints only.... for ages plus eyesight probs that started Feb 21.

Hope you are well going forwards.x

Hi MilosMum,

I notice that your surgery is scheduled for tomorrow and hope that it all goes well for you.

Kind regards,

Jolamine xx

Helloooo !

Thanks for your message...My surgery was the 8th June....so i'm already back at work...I had a salpingo-oophorectomy ! .....Went back to work on 27th June cos really fine...like carrying hoover upstairs and sorting litter trays (which was my biggest worry)...Anyway all fine.  Had eye hospital appointment today...just out of dark glasses after having eyes dilated...Dr said my eyes are not just healthy but very healthy!...which leaves me with some element of dissapointment as I know there is a physical pulling of my right eye.

I have reports and the actual images from my MRI...the doctor there says my eyeball is visually fine on the MRI scan..I can scan back and forth through it but it means nothing to me in terms of what is abnormal...so I have to believe them. 

Hope you are doing well and keeping safe...x

Hi MilosMum,

I am sorry for my mistake, but am glad to hear that your surgery is over and done with and, that you are recovering so well.

I am glad to hear that you got a clean bill of health from the Eye Hospital today, although I can appreciate that you're still not happy, when you are aware of the pull in your right eye. Don't be afraid to get this seen to again if this pull doesn't settle down after a month or so. Could this be a squint rather than a visual problem?

Kind regards,

Jolamine xx

Hello Jolamine...

Thank you for your reply, please don't be sorry, nice of you to ask...

The eye thing is like a physical feeling of something being caught on something... really weird....I feel like if I could put scissors under my eyeball and snip it would go.... it's like when I look up the lower part of my eye is attached to something it shouldn't be... that's the best I can do for explaining...

The Dr today said he could only tell me if my eyes are good or bad... not necessarily what is causing another problem. He said I do not need to see an optician for two years.... there is nothing wrong ... this is just frustrating....but because of the MRI scan I do kind of feel better. 

Don't know where to turn with it so just gonna leave it for now. Maybe I've reached a point where this is as good as it gets... weird vision, painful left hip and left knee... general joint arthralgia... still too scared to stop the Letrozole....so I think I'll just shut up moaning and plod on.....from the things I've read I really could be in a worse situation with my prognosis.

How are you??

X

Hello Jolamine...

Thank you for your reply, please don't be sorry, nice of you to ask...

The eye thing is like a physical feeling of something being caught on something... really weird....I feel like if I could put scissors under my eyeball and snip it would go.... it's like when I look up the lower part of my eye is attached to something it shouldn't be... that's the best I can do for explaining...

The Dr today said he could only tell me if my eyes are good or bad... not necessarily what is causing another problem. He said I do not need to see an optician for two years.... there is nothing wrong ... this is just frustrating....but because of the MRI scan I do kind of feel better. 

Don't know where to turn with it so just gonna leave it for now. Maybe I've reached a point where this is as good as it gets... weird vision, painful left hip and left knee... general joint arthralgia... still too scared to stop the Letrozole....so I think I'll just shut up moaning and plod on.....from the things I've read I really could be in a worse situation with my prognosis.

How are you??

X

Hi MilosMum,

I am a lot better now that I am no longer taking Letrozole, although I still suffer with some of the side-effects. Still, I'm glad that I perservered with it, because I feel that I have done all that I can to keep the cancer at bay.

Like you, I feel that I could be a lot worse off and, I'm grateful to still be here 12years after my first diagnosis.

Kind regards,

Jolamine xx