Back again. Letrozole

Hi Leolady and welcome back to the forum, though I am so sorry to hear how difficult things are for you. That's a difficult one isn't it with such a short time to go until you can come off this drug, however, what is happening  for you doesn't sound like much of a life ether, so its a catch 22 situation.

Are you still in touch, or could you get in touch with your Breast Cancer Nurse and meet with them to discuss this? They could put all your details into the PRECICT tool and see how much of  a benefit you are getting from this drug., then you can make an informed choice re this.

Im only discussing the above because this is exactly what happened for me but mine was with Gynae issues which became intolerable and the predict tool gave me a very small benefit from drugs so I had to make a choice and I did, I came off the drugs. That said my decision was based on a discussion with the Breast nurse and between us we agreed that this is what I would do.

Im sorry not to maybe have been of more concise help, but it is really down to you at the end of the day to make the choice which suits you best and one that you can live with when the choice is made.

Meanwhile it is nice to talk with you again and Im sending some huge big hugs your way for now. xxxxx

Hi there.

I've just started Letrozole after bilateral mastectomies and thankfully am doing ok so far...banging headache aside (could be the Xmas sherry!)

Interested to read your side effects and wondered if you had any menopausal symptoms before starting Letrozole? I'm asking because I habe been meno symptomatic for a couple of years although  I was diagnosed with hypothyroidism last yr which virtually mirrors menopause symptoms...I was hoping that I won't feel any worse than I have been the last few years but now I'm off hrt should I expect more severe symptoms like you describe? 

My bcn said if Letrozole doesn't sound me there are alternatives- have you been offered different options?

Best wishes

Hi there,

I was well into my 60’s when I developed breast cancer, so I’d enjoyed menopause. But Letrozole has been generous enough to give me the symptoms again. 
From what I can work out from various conversations all of the aromatase  inhibitiors come with side effects. So I’ve persevered with Letrozole. At least this bitterly cold weather is helping ‍

if you are early on with Letrozole you might like to think about a different drug. 
Don’t feel I’ve been much use. Sorry. Keep battling the alternative isn’t much fun either.

I'm on Tamoxifen since May last year, it Letrozole but my knee was too painful. I am wondering if I will decline to keep going after 5 yrs if they suggest it. Now got the Zoledronic Acid infusion on top of it. I do always get up again Leo Lady. At least the sun is peeping through occasionally. If the daffodils can keep going in torrential rain, so can I. Xx Hot flushes, fatigue and a variety of aches and pains but still I dance. 

Hi,

I have tired all the the subtypes of letrozole and Tamoxifen and everything else under the sun. I tried them for at least three plus months so I feel I gave them a good go. I am crazy hypermobile and ended up on morphine for joint pain (I don't usually feel pain so it must have been bad) I did the prediction thing with the oncologist and as I was 23 they had to push the age as it didn't go that young. In the end we found it didn't help much at all so I had the length of life chat and decided to come off it so I could enjoy life without pain and horrible side effects. I still do the zoladex which covers you more. I have just had a recurrence and they want to try a new injection which they don't usually use. I don't know if it helps but you could always nag them about alternatives?? I hope this helps, and I apologise if not!! I hope you find a solution and feel much better soon, I always say menopause isn't fun, don't do it!! 

Sunshine kid 

I was referred for acupuncture by my breast nurse - it was really useful. Also limiting caffeine, alcohol, sugar intake and chocolate helped too. A small desk top fan on continuously at night on my face helps, and a silk duvet. They do pass and lessen with time, it’s just tough when we are younger. 

Hi,

I've been taking Letrozole since April and despite having gone through the menopause without any problems, since starting this medication I've had the most extreme hot flushes, to the point where my hair was wet. 

My consultant gave me Oxybutynin which is used for bladder control but has a side effect that helps flushes.

This drug has really helped and while the flushes still happen, they are not as extreme or as often!

Really hope this helps you.... Angie 

Hi Leolady56.  I started Letrozole 3 years ago at 42 and I'm meant to be on it for five years and then start tamoxifen.  I had no perimenopausal symptoms before starting Letrozole and I have to have hormone suppressant injections every three months to keep me in the menopause and it's been really tough.  I haven't had hot flashes as much as the other women in this chat but the joint pains were horrendous every morning, really bad brain fog and fatigue, and I've also been suffering from really bad migraines which I've assumed are caused by the hormone treatment.  Exercise in the morning really helped with the joint pains and I'm also doing acupuncture.  Even though most of the symptoms have definitely improved, my physical, emotional, and cognitive functions are far from what they used to be, and this I find as the most worrying of all.  

I've spoken to my GP about it who didn't really care about the fatigue and migraines, and recently got in touch with the breast care nurses to discuss these symptoms as I've always hoped they would go away in time.  They referred me to oncology and after calling several different numbers and managing to describe my concerns to a clinician, they've now referred me back to the GP....  I feel it's pointless getting in touch with the GP again as they didn't really want to know the first time round.  It was interesting to read other women's experience which was very different from mine and they actually got to discuss their symptoms and the pros and cons of being on Letrozole with a clinician.