This is Dancey written my first blog must apologise put mastectomy should have been

mamagram so sorry Letrozole head

Hi Dancey, i came across your post because I just stopped taking letrozole. was on it for 10 years!!!  breast and liver cancer in 2010. chemo and radio. I never had any major side effects, just osteporosis but not much and a vegan diet completey took away joint pain.  But now I want to know what to expect of the withdrawl. I see you posted here one year ago. How are you doing? 

Hi to both you ladies:). I've been on Letrozole since 2018 and honestly cannot imagine being on it for another 3-8 years. I, too have awful joint side effects, constantly tired, no energy, irritable...but I just smile and pretend it's all OK. I actually thought that once you stop taking Letrozole-your SE reduce. I wasn't aware of any withdrawal symptoms, which is what propelled me to reply to your posts. I'd be interested to know whether either of you experienced any withdrawal effects? 

Best wishes,

Marla   

I was on Letrozole for 5 years. The side effects were not too bad for me, although I think maybe because I was on Tamoxifan for a year prior and could not cope with them, Letrozole side effects seemed mild in comparison. I stopped them about 4 months ago and started getting migraines about 3 weeks ago. In the last 3 weeks I have had about 3 days with no headache! My GP is going to prescribe some pain relief but I'm hoping they will settle down. I have insomnia which started pretty soon after stopping Letrozole. I'm just hoping it all settles down soon. There isn't much information about withdrawal. 

Hi All,

Ive been having problems with joints aching, particularly my knees and hips, but all over. I live in a very hilly area and dog walking was a bit challenging. However, I started taking high dose Vitamin B complex and it's all but reduced the bone pain to nil. Energy levels feel up a bit too. I've been on letrozole for around 18 months. I've got very high BP and after having no luck with BP meds my oncologist has suggested I stop Letrozole for 6 weeks to see if my BP comes down. I wondered if anyone else had high BP?

thank you

Hi did you come off letrozole? I'm interested in if you improved as I'm coming off them today for a couple of months

Hi there-no, I didn't come off it in the end. It's now 2.5 years (since I started taking it) and counting:). Are you coming off under the guidance of your doctor, or are you doing this on the "hush hush"? xxx

Hi Wiley, and apologies for the late reply: I have high BP (normally) & am on medication for it, and I think the Letrozole may have bumped it up slightly, but interestingly, I've been abroad since December, and my BP has never been so good, so I can say for certain that it *is* possible for some, to manage their BP even on Letrozole-it obviously depends how high yours is normally, but I find that with daily walks (nearly daily) & keeping my weight down helps massively, in keeping my BP down. 

Hi no I've been on them for 8 years and are supposed to be on them for 10 years because I've been told after 10 years they are non effective. I saw my oncologist yesterday and he said that if I stayed on them for another 2 years it will not really make any difference if I came off them so I'm coming off them for 2 months to see if I feel any better if I don't then will go back on them xxx

Oh, that's great news! Well done for doing your time, though I understand it may only be a temporary break:). Eight years is a long time! I just wanted to check that you're doing this with the support of your doctor (oncologist) because it's so important to make these decisions "informed"-it sounds like you are *very* informed and I am so happy for you! I am counting my days/years down:). It would be interesting to hear how you feel *off* Letrozole, and how quickly after stopping your meds, your side effects improve-would you mind updating us here?  xxxx