Know what you mean Heather about not being the woman you used to be and trying to find and feel comfortable with the new one!!! At least we can get support here!
Jane!!! When did you find this out?? How awful for you? Are you still working full tilt? Why have you not shared this with us May girls!!!Hope you get something resolved soon!
Wandyx
Hello
I began taking Letrozole in January and couldn’t believe how stiff I felt. I initially thought it was due to surgery I had in December (oophorectomy) - then I realized it was the SEs. The hot flashes are still present but I think are decreasing. I’ve started taking Sage supplement for this and I believe it is helping.
Just began taking Glucosamine for the stiffness/pain. Here’s hoping it works!
Hi All
I have been taking Femera/Letrozole since last July and my goodness my body does ache, knees, shoulders, hips and my hands are really stiff. It hurts to do ordinary daily tasks, no one seems to believe me when I say how my body aches, oh they say but you look so well. I cant believe I have another 4 years of this, but if it keeps the cancer at bay.
Hi Everyone I was on tomoxifen for five years then transferred to femara which I have now been taking for 18 mths. After three months on this drug I had trouble walking down the stairs due to pain in my left foot the good news is it lasted a few months then went! However last August I suddenly developed pain and stiffness in my upper right arm when using it in certain postions-this is also seen at the elbow and shoulder. X rays found nothing. Has anyone else had this problem-only my physio therapist insists this is not femara nor as my oncologist suggests op damadge. I too find the latter hard to comprehend as my op was nearly seven years ago unless my arm has ceased up as I did have an mx with full lymph clearence.
For others on femara I too have hot flushes, disturbed sleep, can be a bit emotional, but myself I found my SE lessened the longer I was on the drug. All the best to you all JL
hi I started on letrozole 16 months ago and aches go on for me too. Have been considering asking for change at my next appointment but reading this thread its given me a boost to carry on knowing im not alone.
In the morning am like an old woman clinging to the furnature to get to the bathroom!
Worry most about the number of pain killers i take and what it is doing to me in the long term as taking paracetamol, ibuprofen and also take diclofenac when i go to bed as find it hurts more when lying down. Also really bad aches in hands and feet can only describe as sickly pain. Take devils claw supplement which i think helps a bit
good luck everyone
Haven’t anything further to add to my previous posts except that its all still the same. Its just nice to know I’m not alone!!..
Wandyx
Hi Wandy and fellow sufferers,
My side effects are the same as yours. I have regular aromatherapy which I find helps ease the stiffness. I have to avoid certain oils such as lavendar and geranium which can be oestrogen stilmulating so my aromatherapist always checks in her reference book if a particular oil is suitable. As for my emotional state, I cry over the silliest thing.
Letrozole has proved to be a very effective drug for me. I have been on the drug for 10 years and am still in remission after being diagnosed with a secondary in a distant lymph node in 2002 and after being given 2 years to live. When I first went on the drug, I was told that I would only be on it for 5 years but because of the secondary diagnosis and the drugs effectiveness, the oncologist says I will now be kept on it until it ceases to work or the side effects outweigh the benefits.
So ladies, keep taking letrozole and I hope it proves to be as effective for you as it has been for me.
Take care,
Wendy
Wendy,
Great to hear from you and the benefits which obviously far outweigh the se’s. A good reason to keep taking the pills!
Wandyx
Hi
I went for my six monthly appointment last week, and asked the consultant about all the aches and pains and stiffness - was it caused by the letrozole - he said yes probably and it was a good sign that the treatment was working. I asked will I be in pain for the next four years and the answer I got was 'yes you will, take painkillers. It is hard to keep a smile on your face knowing that.
I suppose he was being honest - brutally so.
keep taking the tablets.
Hello Browen
I saw my Onc last Wednesday for my yearly checkup and I told him that some ladies are being told that the side effects that they are experiencing show that the AIs are working. Whilst I don’t have the aches and pains that some ladies have so where did that leave me?
I have never seen him so annoyed and my husband looked at me to say “why did you bring that one up” My Onc said that he was shocked that anyone in the medical profession should say this and that they shouldn’t be in their jobs basically.
The side effects you are suffering might go away or lessen a little, you don’t know neither does your Onc. But then after he has said that to you and they do stop will you worry that the drug has stopped working.
We have to trust these people but sometimes I wonder.
Take care
Hazel
Hello Hazel
A friend of mine is taking Letrozole, we started taking it within a week of each other, and she has no side effects at all. When I told her what the consultant had said to me her reply was does that mean the treatment is not working for me.
I did my best to reassure her that everyone is different, another friend of mine also suffers from aching joints but not as badly as myself, what I need is a 2 weeks holiday lying on a tropical beach in the hot sunshine.
Good luck
Hello Browen
I just wish it would stop raining, I’m hoping that this means we will get a nice summer. Somehow the sun just makes it all seem a bit better.
Hazel
Hi
Just went to pick up my prescription and I’ve got another different generic, they did promise me I could keep to Teva but obviously not.
This time its Arrow,gone through the list of ingredients and it includes hypromellose which is not in Femara, Sandoz and Teva.
I’m going to get my GP to request that I am given either Sandoz or Teva on the prescription. I am happy to have a generic but at least one that I am okay on.
Hazel
Have been taking Femara for a year now.Took half a tablet to start with , then the correct dose after 3months…in the last few weeks I notice quite a painful right knee, but am going to persever with them, so as to stop the cancer from spreading to other organs. I feel depressed , but tears come from nowhere in certain situations !! never used to be like that ! Keep taking them ladies , and live each day …Carpe Deum etc etc …Maggie
Hi Maggie
Welcome to the BCC forums, if you feel it would help please feel free to call our helpliners, they are very good listeners and can provide further support ideas and information, the lines are open during the week 9-5 and on Saturdays 10-2 on 0808 800 6000
Take care
Lucy
Thank you lucy, my sentence should have read, 'I dont feel depressed’I missed out the word 'dont’feel depressed.Maggie
hi maggie
you sound like you’re having a horrible time - did you know that there are alternatives?
i swapped from femera to exemestane a few months ago after i got fed up with thr femara - hot flushes & night sweats despite even more meds, impossible to get any weight off
i swapped to exemestane & am doing better with it - not perfect: worse for teenage acne & still affecting my weight but the joint pain is back down to mainly the wrists so not competing too much arthritis
like you say, feels like we’ve got to manage one of them, so it’s worth experimenting to find the least bad option
Hazel,
I’ve been on letrozole now for 18 months and SEs are gradually getting worse - sore, stiff hips, ankles, shoulders, night sweats, headaches, constantly tired and feeling nauseous.
However, when I started with letrozole I was on Femara, this came off licence and I was given Teva brand which was ok. With no explanation (cost presumably) for two months I was given the Arrow brand and I felt absolutely shocking. Much worse SEs and suffered some post-meno bleeding (the follow up to which is another long story! (No reason found!)). After these two prescriptions I started getting the Teva brand again and almost immediately felt a lot better (until the past two to three months).
I would suggest you request to go back to Teva.
Jo
Hello Jo I spoke to my GP and he has actually put on the prescription that it has to be Teva so I shouldn’t have that problem again hopefully.
Hazel
I
Lucky you, I have taken 2 tablets and am suffering big time. Headache, nausea, stiffness, lethargy shall I go on, ? However, thanks to this site I feel reassured. The problem is you assume the worst…but from reading posts I recognise that the longer I take it the less the SE are or should be…so will get on with the day just at a slower pace.