Well done for checking things out with the BCN. I have been to see the consultant at the hospital and they have advised I stay off Letrozole/Femara for 4 - 6 weeks - which they say is okay. I have also been referred to a dermatologist in the meantime. Not sure what the next step will be but I feel reassured too that, firstly, these really bad side effects have been taken seriously and secondly, that something is being done.
It really is important that we take ourselves seriously and not put up with too much in the way of side effects - these drugs are still in the research stages.
All the best to you all.
Harebell
I took Fermara for 12 months and put up with all the side effects but it did’nt work for me, my cancer came back so I have been changed to tamoxifen as that works differently.
Hope it works for all of you.
Take care.
Jan
Hallo Femara ladies. Just thought anyone follwing this thread might be interested to know that the second opinion on my menopausal blood tests have resulted in a changed opinion. I AM to have monthly Zoladex implants to complement the Femara. Had first one yesterday.
I think the message here is to always speak up and ask questions if in doubt about treatment. Just a shame that in some areas, we - who are not experts - need to be so clued up on treatment rather than have complete confidence in our cash-strapped, hard-working medical teams. Thank goodness for this site!
I seem to be experiencing every side effect of oestrogen depletion now ever written! But hopefully, this is transient as body gets used to it and I’ll be back on form for Christmas!
Hi Ladies
I’ve been on femara for 2 years and just want to make sure that you are all getting your prescription for calcium tablets.
I’ve been taking my femara but had a dexa scan recently which showed I have thinning of the bones. Just make sure that you have the calcium tablets and the dexa scans.
Mal
Haxted , I sympathise with you as I seem to be the same .Cannot believe how Femara has affected me , or rather the depletion of oestrogen .
Just hope it’s doing the same to any cancer cells trying to get through !
Hallo jackwagstaff! I hope this encourages you! Had a horrendous six weeks after starting on Femara (the effects on my mind were the worse than the effects on my body! I almost gave up all treatment!) BUT - my hope that I would be back up and running for Christmas was fulfilled! What I am left with is mostly muscle fatigue and weakness. My body seems to have acclimatised to the worst of the drug and it is tolerable. I know this is not the case for all but don’t give up at the peak of any side effects you may experience - they may dissipate as for me. I hope so.
Had second Zoladex implant yesterday and have a chronic headache today! Hopefully that’s also just a temporarory side effect due to the initial flood of whatever it is in it!
Next stop - CT scans end of next month to see if the Femara/Zoladex combination have actually arrested further progress of secondaries! Otherwise - it’s back to the drawing board!
Hello ladies,
I’ve been looking around this site for a while, looking for others on Femara/Letrozole. On reading your experiences I now feel normal!
I finished my treatment in Sept and started on this drug, I was fairly fit before - well for a 59 year old! I think its put 20 years on me…aching bones and joints and the hot flushes. I did have the flushes before my treatment started, but chemo seemed to knock them into touch. Until I started the Femara. I can deal with them through the day but the nights…I’m no good without my sleep. I have asked for advice from onc on supplements and was told definately not as cancer was E+8/8. Tried gp for poss sleeping tabs, she was very nice but although happy to give them to me short term, not suitable for the long term. Anyone any ideas, I’ve got the chillo pillow, light duvet and take a iced water to bed to sip when I wake, help please, Ellie.
Hi all!
I’m 43 and have had a rads-to-ovaries induced menopause (rads Nov.10). Just started on femara 3 days ago and feel absolutely exhausted - feel like I want to go back to bed after only being up a few hours! Planning to fight it this pm. with a (very short!) stint on my ex.bike, coffee and a nice shower afterwards! I had a quick scan through posts on this topic and I can’t really see this mentioned.
Wondered if anyone out there had this tiredness on taking the drug intially and how long did it last? I agree with the opinions about the leaflet/website and heart troubles - it’s quite worrying, on top of all the other stuff we are dealing with.
All the best, Sarah.
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Hi Norberte and all!
Sorry if I was a bit misleading with my post - I don’t have any special info. re:femara and heart probs! It was just that when I got my first pres.for them last Fri., because they only had 5 tabs. available in Boots and no leaflet, I looked it up on the femara wesbite. They do mention “heart attacks” on the very rare SEs section, along with such delights as strokes and “other cancers”, but you know what these leaflets are like. I was a bit concerned as I have a few heart rhythm probs. occasionally with taking venlafaxine ADs (taken them for 11 years), heart palps. with my hot flushes and a weird feeling when I’m dropping of to sleep, so I was a bit worried. I think a visit to my GP soon is in order.
All the best, Sarah.
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Sorry for interrupting - not Fluoxetine if taking Tamox, so you should check to see if it’s contra-indicated for Femara as well. They work slightly differently so it might be ok.
Hi everyone after 5 years on tomoxifen I started femara 5 months ago my biggest problem is pain in my ankle. It’s almost unbearable when walking down the stairs. Started up a few weeks ago. Already had problems with knee that now feels as though it clicks out as I walk has anyone else had these problems with femara? Or any suggestion what may help. All the best to everyone JL
Hi JL,
I had to come off femara because of very bad s.e’s. Joint pain is recognised as a sympton in a lot of women.
I am now on tamoxifen - same s.e’s but not nearly as bad. My onc has put me on a very low dose of amytripteline - apparently very good for nerve end pain.
I was sceptical at first - but it does seem to work.
Take care.
Many thanks mafsmum I hope you find tomoxifen better. I did not have bad joint pains on it so hopefully you will not. I have now been in touch with my gp who is arranging for my ankle to be x rayed. As it may be arthristis or a strain but if x ray reveals neither than I will know for sure it is side effects to femara.Good luck with the tomoxifen take care JL
Hello everyone
I saw this topic and wanted to join.I’ve been on Femara for 4 months now.I hate that little yellow pill with all my might.
I had my ovaries out because my cancer is er+ and I’m in my mid 30’s so there is a lot of estrogen running around.
My body feels 80 yrs old.
My ankles hurt a lot and my knees.I find that daily walking does help and it eases but if I stop for a day or two,everything siezes up again.
The otherday I went down on the floor to clean up a spilt coffee on my carpet and I could not get up!
That’s horrible.I had to crawl to the couch to lift myself up.its depressing.
2x
Hi 2X
Like you I hate that little pill. I have been on Femara for 5 months. Try as I might I have cannot see those pills as ‘sunshine’ yellow!!
I am much older than you at 61 but identify completely with the 80yr old comment. I refer to Femara as the instant old lady pill!!
I have a lot of pain especially around my shoulders, upper arms and into my forearms and hand/fingers. My GP had presribed Ibuprofen at doses higher than over the counter and it does take the edge off especially during the day while I am moving. However, during the night I get increasingly more pain as I seize up until in the end I get out of bed,sometimes as early as 3-4.30.
I had two tumours - one lobular and one tubular and both were strongly ER+ so I am determined not to give up on the hormone therapy.
I have an oncologist appt coming where I will be discussing this and looking to fine tune some pain relief to make this more tolerable.I am surprised by the strength of these side effects. I had expected the hot flushes to be quite bad and also to have some aches and pains but not at this level.
Take care of yourself and I hope you can get some help with the pain.
Posy
For the sake of anyone who is new to Femara, here’s my experience.
I don’t hate that little pill… I was diagnosed with bone mets 3 weeks after primary, and Femara + bisphosphonates kept me very well for almost 3 years. And not everyone gets bad SEs. (I have a hunch that they are worse in younger women - I was 56 when dx)
If you have primary bc and your oncologist has prescribed Femara to help prevent recurrence, it’s your choice to continue or not… but there are other hormonal therapy tablets available - so I hope those of you who have had problems with Femara soon find a better solution and have many years of good health.
Hi all!
Just a little note/update to my earlier post! Been on femara now for 5/6 weeks and heart and headache SEs a lot better. It seems to have improved particularly in the last 2 weeks or so since I gave up ground coffee - which I love - but which seems to have a pronounced effect on me - blood sugar plummeting, sleep probs etc. Why are a lot of things we love not good for us!? Changed to Dowe Egberts instant which is not too bad and has none of the femara effects, but a little caffeine buzz. Don’t seem to have any joint pains with femara yet - fingers crossed! It sounds very unpleasant.
All the best, Sarahx
I hate the tablets with a passion as well , but am not brave / stupid enough to not take them .
The hotflushes and night sweats , as I´ve said before are the worst of my se , because i just find them so debilitating . I take gabapentin for those and it has halved them from every hour ( day and night ) to every two hours and not as intense.
I also get pains in my feet and took to using progesterone cream every day rubbed into my feet and knees , it seems to work.
I am as stiff as a board after sitting , so go to pilates to ease that , which it does , but of course the stiffness returns .
I get dreadful cramps in my hands and feet .
On top of all this , my liver is affected , my chloresterol is sky high , my blood pressure is raised and I´m now having tests on my heart .
Despite it all ,this has got to be my life for the next four years , and when it gets me down and I get all uptight and tearful and really sorry for myself , i think how lucky I am to be here . Sometimes it helps , other times I just wollow for a bit in my own misery .
Kris