Letrozole

[Sue C]

Hi Ladies

Was wondering if anyone has experienced breast swelling and discomfort on letrozole? Both my armpits are sore and both breasts are sore and swollen. Not sure if this is the letrozole or an infection maybe? Its all quite worrying😢

[Sal49]

Hi I have been on Letrazole for four months now. Was fine until a week ago. Now as described by some of you my joints legs and feet are so painful I am hobbling at times! My biggest worry is that the last 4 nights I have woken up with a completely numb arm and hand on mastectomy side. My right top arm is really painful on and off, has woken me in the night a few times. I don't think it can be bone mets happening that quick - ILC dx sept 13, think it must be the drug. Has anyone else had similar? 

[Bianco]

Hello. I've been on it for about the same time.  I feel very low in mood. I am only 3 and a half weeks post mastectomy and still sore

[maryminder]

I was diagnosed with a 70mm Grade 2 ER+ Lobular BC in June 2016, I  had a mastectomy in Sept followed by Chemo and i am due to start taking Letrozole when my Rads have finished (end march) and will take them for 10 years I have also been put on Ibandronic Acid tabs for 3 years to help protect my bones there was a study puplished in the Lancet last year about the benefits of this drug, it is normally prescribed for Osteoporosis but has been shown to help post menopausal woman with ER+ BC, the health authority I come under are happy to prescribe them but not all are, it may be worth checking with your Oncologist.

I was also advised to take Glucosamine, has anyone else been recommended and if so is it working for you?

Mary x

[rosie14]

Hi Gillianz I am suffering from exactly the same side effects as you! I have been taking Letrozole for 2 years now and in that time been prescribed 5 different brands! All seem as bad as each other. I too have knee and back problems and wondered if the pains were down to my condition! Recently I had a DIEP reconstruction and stopped taking Letrozole for 3 weeks and during that time didn't suffer with the severe leg pains. Could have been due to that or the fact I was on very strong pain killers. When I know I have a distance to walk I take ibuprofen but it doesn't help that much! I have to push myself to get upstairs! I feel very old my mil is 90 and gets about pain free and I am 61 and struggle!😬

[Gillianz]

I joined this forum because I am suffering with severe leg pains - feet feel as if the bones are broken and my legs feel as if I have strings tightly pulling with sharp pains, aching and spasming when in bed. I wake up every hour and have to stretch out my legs as the knees hurt so much. I did have some problems with my knees prior to cancer, but now I hobble about and standing still is so painful for more than a few minutes. I am taking supplements like you and paracetamol in the daytime with paracodal at night, who helps a bit sometimes. I was offered other tablets to help at my first annual checkup but warned that they too have side effects. Have heard that acupuncture could help - anyone experienced that helping?

[rosie53]

Hi ladies, been reading some of the posts on this thread and just wanted to add my experience of letrozole. 

A quick run of my history, I'm 49 dx breast cancer in right breast in 2007 er positive, very low grade, had lumpectomy and 4 wks of radio  (no chemo required) put on tamoxifen, then in 2014 after suffering months of hip pain was dx with metastatic breast cancer in my hips ribs, spine and femour (I didn't even know you could get breast cancer in your bones!!) To say it was a shock is an under statement! I was put back on tamoxifen for 15 months but didn't respond as well as hoped for with it so Oct 2015 I was changed to letrozole, like most of you ladies I have suffered terrible pain especially in my hip area, I got very tired and emotional. BUT......A lot of the side effects have calmed down now, I still get tired, but nothing too bad, pain wise I am up and down some days I don't take any painkillers others I do but nothing any stronger than paracetamol, naproxen or co-codamol. I am fortunate enough to have a wonderful GP who prescribes the branded Femara which is a lot kinder! 

Really I wanted to say was, please hang in there the side effects do ease, lam doing brilliant on this treatment and it's kicking the big Cs backside.....so letrozole has become my "new best friend"

Hope this helps anyone struggling out there. 

Hugs J xx

[JaneAnn64]

Hi I have been taking Letrozole for 8 weeks, I was very worried. I have hot flushes but not too bad, i do get joint pain but already have fibromyalgia, mood swings and get very tired. I can cope with it as I feel very lucky my cancer was caught very early. I had four biopsies a lumpectomyand finally a mastectomy. i think my biggest worry is thinning hair I find myself checking if its gone any thinner. I just want to see my granddaughter grow up she is seven. I have benign cells in my other breast. I wish everyone battling Cancer strength 

[lollypoplyn]

hi paula  i have been taking letrozole for two months  n yes  the  pain in the legs and  arms are  bad   but  i have  some great pain relief  i take 300mg gabapentin 3 times a day  200mg of tramdol 3 times day n also if  pain  is really bad  i take 2.5 mls of oramorph  when needed ,  i lso  have real  bad hot flushes  all  day  but wors  after dinner time  i  sit next to the fan  n wear  very light cotton clothing x  i hope  you  feel better with the letrozole  soon  hun  xxx 

[waveylocks]

Hi  am sorry to hear about all the se's on Letrozole. I found different brands have different effects so its definately worth checking this out. Once I foind a brand that gave me the least se I stuck to that one. My GP wrote it on my script. I am not  symptom free but some if the brands completely floored me. Since having just the one brand am much better. I dont  know why that helps but have heard others commenting on this. 

Re whether five or ten years. My tumour was extremely highly driven by oestrogen and highly aggressive. When my onc ,mentioned to me that the latest research is showing that 10years shows improved survivial rates I was not impressed. I asked him for the difference and he said about 4% increase in survival so significant. I said well I might survive but my bones will have crumbled away after ten years of the stuff!! Am not sure that if it really is only 4% reductiom in reoccurrance that I will persist. However dont have to think about it for another three years.....daunting thought though.  By then there may well be more reasearch out showing whether its worth it or not. Difficult one and as well as quality of life one has to consider it against your own bc history.

Hugs to all you brave ladies....

[Joy Moreno]

I'm having severe pain in wrist, fingers, hip, shoulders after 8 months on Letrozol. I've only just figured out its side effects from reading all the threads on this forum. I've been convinced it was accelerated and sudden ageing, or bone cancer - which it is not as I've just had a bone scan. I'm going to ask GP if I can go back on Tamoxifen as the side effects were headaches, severe muscle cramps in legs & feet and hot flushes! All nasty but The Letrozol ones are considerably worse. Might just ask if I can have a break & see what happens - this is so dire, it's changing me physically in an extreme way and giving me constant pain. I feel I need prescription sleeping piles and morphine!

[Joy Moreno]

Hi PaulaJane,
I was on Tamoxifen fir three years and then put on Letrozol as it was supposedly even better for preventing recurrence. However, this medication is giving me multiple muscle, joint and bone pain. I'm 56 and was extremely agile and mobile - I'm now quite infirm and struggle with walking and getting around - it's shocking! I sleep erratically , seldom through the night, have had bone density scan and diagnosed last week with Osteopenia. Am often tired and am convinced I'm dying! Reassigned g all these threads has made me realise it's clearly the medication. I think I'd rather take the cancer risk as this is ageing and deeply depressing. I've become a mega hypochondriaccaa each day I awake with more aches & pains oh increasing intensity, very worrying. At least now I know why. Think I might quit with it for a month and what happens. Otherwise I'm
going to die prematurely of old age. I'm taking magnesium & fish oil, zinc and reasonly hesltjily - I do drink wine once a day to ease the pain as I've become very depressed with all this. Any advice welcome.

[koshlake57]

I feel as you do Borbie.  I have been on Letrozole for 21 months post lumpectomy and radiotherapy.  This drug is awful for me.  The pain in my joints is terrible and I feel 80 instead of almost 60.  Not only general joint pain but all these "joint issues".  In the first year I had 6 issues:  tennis elbow, inflamed bicepts tendon, severe pain in wrist, etc.  Then I got frozen shoulder in the surgery side.  Now I need knee surgery for meniscus repair and my shoulder on the surgery side is again suffering from inflamed biceps tendon.   Also the MRI showed a stress fracture and osteoporosis in my good knee. All these injuries/issues cannot be coincidental.  The physio thinks the drug is making me more receptive to repetitive strain injury and has made me more susceptible to fractures.  I would like to stop this drug but need more information on the marginal benefits of continuing it for 3 more years (to make up my 5 years).  If anyone knows any good research sources please let me know.  I will certainly discuss this again with the oncologist next April at my next appointment.

[Moijan]

was reading your thread and thinking, these things are really scary, arent they?

i took Tamoxifen for about two years as part of a double blinded trial in around 2001/3.... The only symptoms I had were spotting pv. As I was post meno anyway...after the trial(5 years) I was put 

on and stayed on Letrozole for another ? 4 years.....I was told I could stop it then if I wanted to...

..the bc came back again......now I believe they are told to stay on Letrozole for at least ten years.

letrozole had its own side effects...but if id known, I would have continued it....have seen that other ladies had the same experience as I.

Please do check with the onc/breast care nurse to find the very latest advice before stopping.........the very thing you really dont want is a recurrence xxxx

[maureenI dle]

I have been on letrazol for about 9 months and not had any side effects from this drug

[borbie]

Hi, I started on anastrazole, took it for 4 weeks and side effects started on day 1 and got progressively worse, hot swollen joints in toes knees and shoulders neck arms and fingers - just awful, also numbness and tingling , 1 oncologist dismissive, stick it out he said but another listened and changed me to Letrozole, started off better, now had it for 2 weeks but it's all coming back, struggling to sleep, painkillers not working. Can't bare the thought of this for the next 5 yrs!! So unfair after all we've been through , I was so raring to get back to normality and enjoy life and this feels like a massive kick in the teeth!!
Still I'm here and alive so just have to suck it up and get on with it!

[rosie53]

Thank you Justbee and Redpark for your replies,  spoke to my bcn today about it and she discussed it with my onc who didn't seem to be too concerned, she said it was too soon to do a CT scan and tumour markers yet and to give it time to take effect. 

Hugs Janette xxxx 

[redpark]

Hi Natalie, I have been told it can take up to 3 months for the Letrozole to start working. Intrestingly I have been taking it for about 12 weeks and the side effects have really just kicked in so hopefully it is doing something to the tumor in my spine.

[JustBee]

I suffered on letrozole for 21/2 years but it stopped working because I developed another cancer. I had really bad hip knee and finger joint pain. I'm now on exemestane  and it is not half as bad. We all get different levels of S Es. I'm so glad enemies tame is better because I didn't think it would be. 

[rosie53]

Hi ladies, need some advice /help please. 

Dx with bone mets in March last year,  was put on tamoxifen and was fine on them but I stopped responding so I have been switched to letrozole about 6 wks ago,  does anyone know how soon you can expect to respond to them?  Also I am having terrible hip and leg pain kind of like sciatica,  but it is only on 1 side so I am convinced these are not working for me!!! Don't want to mither my onc as she said that they take around 6 weeks to take effect. 

Don't know if things are getting worse or is it a side effect? 

Thanks Janette 

[PaulaJane]

Thanks for sharing. I don't suffer many hot flushes I seem to get chills! Good luck with your treatment.

[Spooks]

I was on Exemestane for 4 weeks and I practically got every side effect listed/connected to it. I changed over to Letrozole [have been on it 2 weeks tomorrow] and although I get some side effects it's better than Exemestane. I don't know if the lack of sleep through the night is due to the painful leg muscles and painful Trochanter bursa sac which causes pain in the hips when irritated.

I do feel tired a lot of the time & lethargic and do have trouble sleeping through the night which was the opposite to Exemestane. My joints are painful to touch and muscles and I find it hard to climb stairs with the pain in my knees. My oncologist did warn me about the aches and pains and because of the link to painful joints I have to have regular Bone Density Tests.

I just take Oramorph [morphine] for the aches and pains and when really bad I take 2 Paracetamol as well. I cannot take Ibuprofen and certain other drugs as I am on Warfarin.  The worst SE I find is hot flushes, some are really mega, I take Sage Leaf Capsules for those, they do help but don't eliminate them totally.  One peculiarity I have managed to link to taking either Exemestane or Lerozole is the hot flushes occur when I am needing to go for a wee. I have done a Google search on this and it's amazing how many other people have found the connection too. 

[PaulaJane]

Has anyone else suffered severe leg pains and tiredness whilst taking this tiny tablet which makes me feel dreadful. The aches in the joints and pains in my legs have been debilitating but no one clinical seem to want to admit how severe this can be. I'm on glucosamine, cod liver oil, calcium, magnesium, vitamin c and low dose vitamins d. Paracetamol
And ibuprofen do not touch it, only codeine helps but brings its own SEs. Any experience of this drug that anyone is happy to share with me will be gratefully appreciated.