Starting Letrozole

If your hospital subscribes to the ROSETA trial there is a possibility of signing up, there are different levels to help you with those AI drugs. Just ask when you’re there. It’s being run by Leeds university, I’ve been on it and, believe me, it does help. I’m over 18 months in on my second bout of AI meds, this time is Exemestane, as I had a recurrence. 

Yes, the joint pains are probably the worst but if you think about it, you’ve already been through a huge amount, this is just a bit more! Ive done 5 years already, a year off and another year and a half. I think you could say that oestrogen is the WD-40 of joints. But keeping mobile is the best way of dealing with it. I walk a minimum of a mile each day (usually more) and also do ankle exercises each night at bedtime. (And I’m 80 now or 40-again which sounds better, haha!)

I’m sorry I’ve just rambled really but if the specialists feel this is the right way forward for you, then why would you not take their advice? 

Thanks Moomy, that’s a really helpful reply. I will look into the Roseta trial. I am an active person so I will make sure I keep getting my walking boots on. I read that 150 mins weekly of moderate exercise is hugely beneficial for us BC peeps so will try to tick that box. I will definitely be starting my Letrozole as advised and hope for the best. Wishing you all the best and hoping you are doing well post recurrence. 

Have to say I did research as to brands and insisted I kept to Acord as I felt it was closest to the original (Femara) drug. It will help if your GP writes ‘please supply …. brand’ on your repeats. 

Hugs xxx

Hi I started letrozole last May , same diagnosis and treatment as you. I have noticed joint discomfort especially in my knees , so I’ve had acupuncture (curtsey of nhs) currently on a 12 week gym programme specifically to strengthen leg muscles , I walk as much as possible too. But what I’ve noticed helps most of all is daily shots of ginger and turmeric with black pepper . 

Morning

I confess I don't take letrozole. I did take tamoxifen. The affect on the joints is the same.

Walking is great and accessible to all . I would like to beat the drum for Aquafit, Aquamed and Aquazumba. Our authority charge about £23 a month for their sport and leisure access. This entitled you to unlimited,almost, entry to gym, classes and swimming. I went to Aqua fit and Aquamed at least 3 times a week. It is great exercise. It works everything, including upper arms and chest, perfect for post surgery mobility. It is more, importantly for me,  very sociable and great fun.I've made some great friends, some of whom have been through similar journeys. They are supporting me now and we will celebrate when I go back.

I know  January is a great month for offers on gym and leisure membership so a great way to try it.

A word of warning. I now have a section of wardrobe dedicated to swimsuits. A very guilty pleasure but many bought in the sales. I'm a size 22/24 so they need a new home if anyone needs one. None of them are black.

That’s a fantastic idea, thank you. I will look into that. 

I too was dreading taking this medication and delayed starting it 2 times by almost 3 weeks. The nurse made me commit to a date (today) and so I finally took it this morning. I had a bit of a dry mouth and sore tummy this afternoon but went out for a long walk this afternoon and now feel fine. The effects may be cumulative though I’m guessing so I may have more side effects down the line..,hope you settle in ok with the medication. 

Thank you. I am so exhausted after finishing radiotherapy 2 weeks ago and also having had Kadcyla no 2 last Tuesday. I have therefore decided to give myself a few weeks to recover so I don’t mix up side effects from 3 different things! Gosh this is hard. Wishing you all the very best with your Letrozole journey. Keep us posted.

Hi, I've been on letrozole for over 4 years and I tolerate it well.  At times I have some achy joints, but that's really only if I have been standing for long periods. I try to walk a lot and I think that helps. Best wishes

Thank you, that’s very encouraging.