Letrozole HELP!!

Hi  and a warm welcome to the forum if this is your first post. And apologies for my rubbish memory if it’s not! I’m sure you’ll get lots of responses before long as many folk here are on letrozole. And do remember that there are loads of others out there quite happy on it but not posting here! 

I’m on Anastrozole which is another aromitase inhibitor. I had a lumpectomy and rads - click on my name to see my profile - so similar to you. I do have some side effects but they don’t stop me popping the pills as I want to have the best chance of keeping the beast at bay. My mum died from breast cancer at 53 but I tell myself that I’ve caught mine early and treatments have improved hugely since her time. My dad died from prostate cancer at 60, so I have now, at 61 and a half, lived longer than either of them. It really felt like an achievement to get beyond 60 and a week as that’s how old he was when he died.

The other thing I’d say is that I am very active and although I have some joint pain and fatigue, neither stop me from walking which is my passion. I started during rads to counteract the fatigue, took up Nordic walking to help with post rads breast lymphoedema, and am fitter than I have been in many years. 

So I’d say, give the pills a go, you can stop or switch to another - but I’ve felt it’s all worth it to decrease the chance of recurrence. 

Wishing you well and sending love and a big virtual hug, HFxx

Hi

Another warm welcome from me.

I'm with HappyFeet1 on this. Ultimately it is your decision whether or not you take the medication but I'd say don't let that horrendous list of side effects put you off. Some people get them, some people don't but no-one gets them all. Their point is to block the oestrogen that can stimulate any rogue cancer cells and it's often that lack of oestrogen that creates the side effect. You probably know people who have sailed through menopause without any symptoms, and others who have suffered and become unrecognisable. so it can be with our hormone therapies - some people suffer more than others.

I take Tamoxifen which also has a long list of side effects and I know people who don't take theirs. I'm lucky in that I mainly get hot flushes and some cramps. I do find that the brand I take makes a difference and so do others - the pharmacist tries to give me a brand I'm happy with.

You could try it and see how you get on - there's always the option to stop if you find it unbearable. I can understand how you feel about your family history and I'm sure this is a really difficult time to be going through treatment and the post -treatment stuff.

Finishing treatment is hard in itself and for a lot of us it's when things get difficult because we have to deal with all the emotions we have been pushing away while we do the practical treatment stuff. Then lo and behold, we have a bunch of emotions and our medical team aren't around to reassure us. Lots of people feel they've been dropped off a cliff. There is help with that and along with this site and the support line, you might find that your hospital or nearby centres have some virtual sessions you could tap into. if you go to the main site and click on In Your Area, you can search for things close to you although as we are talking virtual things at the moment, you could probably join any. I know Maggies are putting on some virtual sessions. You can also check out the Emotional Support services available through Macmillan.

I would also recommend a good article by Dr Peter Harvey called After the Treatment Finishes - Then What? I won't put a link because it's on so many random sites but it will pop up if you Google it. I also found a book really useful - the Cancer Survivors Companion by Lucy Atkins. It was recommended by someone on here and helped me a lot - I still dip back into it now and again. Recovery can be a long road for some of us 

Then of course, there's us!  I've been kicking around here for about 4 years and I can't even put into words the debt I owe everyone here for keeping me on an even keel.

Hopefully some others will be along soon to give you their experiences of Letrozole to help you reach a decision and you'll have that glass half full again soon.

R

What brand of Letrozole are they, as they all hange different side effects due to the fillers etc.? Cipla is ther worst for most people, with thr others sitting different people.  I found Accord ther best of ther ones I tried that are available easily on the NHS. I tried Femaras well as my lovely doctor did a special note on thr prescription for that brand,  but they made me feel dizzy. 

I have a 4.5% gain at 10 years and I'm persevering,  so with your gain I'd say to try it too,  if one firmly suit switch brands and try different brands, then there is always exemestane, and tamoxifen if they don't suit you. I always think that it's better to try everything that improves my chances,  as i don't know how I'd feel if I didn't and it came back!

I started on letrazole after lumpectomy, rads and Herceptin etc. I found letrazole left me with very bad joint pain, Femara was a bit better but not good enough so switched to Arimidex. It isn’t perfect in terms of aches but a lot better and certainly better than risking the cancer returning. My advice is try letrazole, I know people who don’t have any problems with it, but find a brand that suits you and if they don’t suit then ask to try Arimidex or Exemestane or Tamoxifen. Don’t suffer in silence - discuss with onco if problematic. Good luck! 

Hi did you really find the Nordic walking helpful for lymphoedema? I’m just looking into it 

Hi Rehead1 , yes I found the Nordic walking was fantastic for my breast lympheodema (don’t know if it works for lymphoedema elsewhere). When I went for my follow up with the lymphoedema nurse, she said it had improved it so much that she could discharge me. I can self refer if I need further help but have not done so and it’s coming up for 4 years since I first saw her. Of course the better bras must help too but she credited the Nordic walking with the extent of the improvement. It won’t ever go completely, apparently, but it is definitely so much better than it was. 
An added benefit is that I love it anyway, I’ve been introduced to areas around me that I didn’t know at all, and have gained another friendship group. Can’t recommend it enough! HFxx

Mine is in my arm and hand I’m doing the exercises and massage but seems to be getting worse so looking into Nordic walking 

Hi there I take letrozole with only minor aches really.  They affect everyone differently.  I am prepared to take this to reduce risk of recurrence.  I think I am more afraid of recurrence than the tablets.