Hi all - I have just started taking letrozole a week ago and now find my legs and arms feel really heavy and painful as though I have run a marathon, which would be impossible as I can hardly make it up the stairs. I also seem to have a bit of an upset stomach as well as the hot flushes/night sweats, etc. Is this normal? I thought the stomach thing and the muscle/joint pain would finish when the chemo stopped. I am also extremely tired (sleepy) but that may be my blood thats low. Could anyone shed some light on this please. I start rads on Friday for 4 weeks and not looking forward to that either.
Thanks. Jean xx
yep that describes me to a tee!!! i was on arimadex first but that ws horrific, my hips gave way and i fell downstairs! then i changed to letrozole at the beginnning of jan and have slowly got worse im having to uncurl my fingers and every bone aches and clicks in my body!
sue
Hi
You might find it useful to have a look at the BCC fact sheet on letrozole (femara). It discusses what it is, how it works and the benefits and possible side effects. To order a copy or read it on line just follow the link below:-
breastcancercare.org.uk/upload/pdf/bcc64_Femara.pdf
I hope you find it helpful.
Best wishes Sam, BCC Facilitator
Hi Jean and Sue,
I started on Letrozole yesterday! so not looking forward to the side effects, my bcn said they were mild and would not last!! l decided not to read the side effects on the packet, as the way l feel since being diagnosed, l imagine every pain going to be what it is not!
So time will tell
Hugs to all
Sandra xxx
Jean
I started Letrozole at the beginning of November last year and have the normal side effects associated with low oestrogen. Actually, they started when I was diagnosed, as I stopped taking HRT immediately.
I have stiff knees, a painful neck, tinnitus, disturbed sleep and tiredness, a rubbish memory and a strange anxious feeling which is hard to describe. It is not a worrying sort of anxiety, more a chemical one. Someone else on here described it as a jittery feeling. I am also much warmer than I used to be. I always felt the cold before, but not any longer. I am too hot at night, but I don’t have sweats as such. I am thirsty too, but I think that may be the calcium I am also taking.
At the start, I did have some nausea but as I was having rads at the time, I wasn’t sure which was causing it, although I did think it was the rads. It might be an idea to take the tablet at a different time of the day, or with a meal, if you are getting stomach problems.
I do find the stairs seem much steeper than before and I also find I shuffle over the carpet, rather than picking my feet up properly and it is harder to get out of the bath! At the start, my toes used to hurt in the morning but that has gone now.
Writing all this down makes it sound much worse than it is. I think I have got used to most of it now. The symptoms are not so severe that I would stop taking the drug, as I am very grateful that I do have something to help stop a recurrence. I take Cod Liver Oil, Glucosamine Sulphate and Chondroitin and Evening Primrose Oil, which I feel help. I also think a lot of the symptoms are just at the start, although some can get worse as time progresses, such as the stiff joints.
I do hope things improve for you and Sue.
Ann x
ive got an app with my onc on friday to dicuss stats about reoccurance with or without drugs, im really only willing to consider not taking them as i have a very rare form of BC (it was tubular and only makes up about 1% of all breast cancers) and i believe it is the least likely to reoccur anyway. as it stands my side effects are so deblitiating that i cannot see myself returning to work! but unfortuately i have to. i shall keep you posted.
sue
Hi all - thanks for your posts - I can rest a wee bit easier now knowing that the side effects are ‘normal’ and I shouldn’t be looking for anything else.On Friday I will be at the clinic at 9am for my herceptin then the Beatson hospital (other side of Glasgow) for my rads at 11.50 then in the afternoon at my GP’s surgery to discuss how I am managing emotionally as I may be put on anti-depressants - woo hoo great Friday for me, I will probably need to go to be as soon as I get home haha!
Sue - good luck for Friday let us know how you get on
Thanks again ladies - hugs to all
Jean xxx
Hi I’ve been on Femara now for 4 months out of 5 years and after reading the fact sheets saying 15% get this side effect, 10% get this side effect, 20% and so on - I’ve decided that I’m part of all these percentages! Hot flushes, night sweats, insomnia, joint ache, bone pain, memory loss, hair thinning, weight gain, coughing - need I go on! Really fed up with the SE’s but what’s the choice? Changing to Arimidex and getting other SE’s or getting a recurrence! Help!
Ginny x
hi everyone. well onc agreed that the benefits of me staying on any AI’s would be negliable due to the type of tumour i had(tubular) so ive been off the tabs for 10 days and WOW!!! no funny head no fatigue no pain. however i would never advocate that anyone came of their medication without consulting their onc, if mine had said no i think you should stay on it or change it then i would but the chance of reoccurance is miniscule(his words).
sue
Hi All,
I have been on Letrozole for 3 and a 1/2 years and have no complaints. Yes, minor SEs, especially a bit of stiffness. But I don’t even think about any of the SEs.
Margaret
I was first diagnosed back in 1986, there was no hormone therapy in those days. I had a recurrence in 2005 when I had mastectomy and put on Tamoxifen and then changed to Arimidex, I did’nt tolerate either so after a discussion with my oncologist I stopped as my prognosis was good.
It was a mistake I had a second recurrence last August and this time I am taking Fermara which I seem to be tolerating quite well. Whenever I have a wobble I just remember how it felt having a recurrence and how frightening it was waiting for my scan results to see if it had spread to any of my organs.
Maybe it will come back but at least I know I am doing all I can to prevent it.
Take care.
Jan
Hi
I’m with you Janice - although I did have 5 years of tamoxifen which I tolerated well, had a recurrence after 12 years - both have been highly ER+. Have just had ovaries removed and taking Letrozole. I have made a point so far of not thinking about the SEs or reading much about them. I figure I’ve had this twice now, just finished 11 months of treatments and I’ve done everything I can to prevent a recurrence, now I just want to stop BC from taking over my life as much as possible, and move on.
I do suspect it will come back, but I want to have a good time in the meantime. BC is in my life, but not in charge of it right now, and I’m keeping it at bay both physically and mentally while I am lucky enough to be in a position to do that.
take care everyone and good luck with it all
mon xx
Good luck Daisyleaf and Janice you´ve certainly been fighting it tooth and nail . Fully understand why you intend to take the letrozole side effects or no side effects .
Kris
Hi
Just thought I’d make a positive post on femara.
I have been taking the little pill for over 18 months and aprt from a little stiffness in the fingers when I first get up, virtually nothing.
There must be plenty of people like me who have negligible s/e but they don’t post. Only people with problems post.
Good luck with the magic pill.
Mal
I wish more people you don´t have problems like you maltomlin would post .
It´s really encouraging to read that someone is AOK , no problems with pills , chemo , rads etc . It´s encouragement for those about to begin that particular journey .It would certainly make me feel that the odds might just be on my side ,and the more positive you feel about things then I think it does affect how some things react . Not always unfortunately ,and it´s hard to be positive when you feel like poo , but the more positive reports about any of the treatments we have to endure then the better .
Kris
I agree, Kris. I was thinking that it would be good to have a section on this site so that people can log each year that passes since their dx with NED (no evidence of disease). That way, they could keep coming back and letting us know how they are doing - assuming people remembered, that is. That would be so encouraging for someone coming on for the first time. Otherwise, they are just reading about the people who have problems. I think I shall start a thread to see if people think it is a good idea.
Ann x
Hi Ladies,
Just to say yes to your idea! l would love to see more positive news! whether it is getting through chemo, radiotherapy or just the zero s/e to drugs!
Sandra xxx
Hi All
Not posted for ages but decided to put in another positive response to Letrozole and treatment in general. Had WLE and SNB July 2009 followed by rads and have been on Letrozole since then. I do get some joint aches and pains but nothing so terrible that I cannot cope. Was 65 in April so expect some wear and tear in the old body but it doesn’t stop me from doing things. I have a sporty family and have started to join them. I did the Pedal it Pink half marathon bike ride in Liverpool in April and am going to do a Triathlon in 2 weeks, 200m swim, 10km bike and 4km run.
I do find that I feel much better if I do some exercise every day. It doesn’t have to be hard, a bit of stretching, a walk, swimming. ALL DO HELP. When you exercise, your body produces endorphins, your own equivalent to “morphine”.
Good luck to all of you on your journey which does end.
LOL
Margaret
Ann , thats really good .
There could be several different threads ,
“We´ve had our surgery and it does get better .”
“I survived chemo .”
“Don´t worry ,rads is just more sunbathing than normal .”
"Not all pills suck "
Those just starting treatment , whatever it may be ,needs to know that there is light at the end of the tunnel. That some people are unfortunate enough to have bad side effects , and it´s really awful for them , but that therre are lots of others who are so lucky because they don´t , and who knows a new person reading it may be lucky enough to become one of those with no side effects .
I´ve had dreeadful ( for me ,) side effects from coming off HRT , but it´s great to read others who have been fine . On the other hand my surgery and rads was absolutely fine , no problems .
I find most ladies with BC to be so positive once they´ve come to terms with the dx , much more so than most men with colds who are convinced the pearly gates are opening for them !!
People coming back on the sites after every year ,great ! Even if they are still writing and contributing here regularly , to have a thread …" I´m Alive And To Prove It I´m Here ! " Thats a really positive message , instead of the "Mile High Club " .Itr could be the "Twelve Month Club ".
What do you think ?
Kris
Yes, Kris, good idea. As you say, there could be lots of different topics within one category. I know some of these things are covered in individual threads but they tend to get lost over time. I just thought it would be good to keep the positive stories altogether, so that when someone new comes on here, or when an existing ‘member’ moves on to a different phase, there would always be some encouraging stories to read.
Btw, like you, I came off HRT after many years. I can’t say what the side effects would have been like under normal circumstances, but taking an aromatase inhibitor as well has obviously made them worse. Still, I am truly grateful that I have that option.
Ann x