Metastatic breast

Hi Angie,

I don't have any experience with the medication you've been given, but I do believe it's worth trying it. With all the new cancer treatments many people with advanced cancers go into remission. Give it a go. Big hug and the very best of luck with your treatment, positivity is so important. I know it's easier said than done, but do hope for the best!

Lana xx

I have meds that I take three weeks on, one week off and, yes, they have side effects (headaches and joint pain) but honestly, for me, it’s better than the alternative.

What medication is it please? And what is your concern about taking it?

I hope you’ve taken the opportunity to talk over with the consultant, BCN or other medical expert the pros and cons of taking/not taking it. 

If you’re worried about side effects, why not try it before dismissing it? 

Hi Angie,  I am sorry to hear that your cancer has now spread.  I had breast cancer 12 years ago.  Was told last year in September I had metastatic breast cancer with bone mets in most bones including skull, spine, etc.  I am on Ribociclib, Exemastane and Denosumab injections with three weeks on and one week off.  I have found I had to have Ribo reduced to 400mg instead of 600mg.  I think it is definitely worth it.  When I found out last year I was wondering if I would see Christmas now one year later know I will see many more Christmases.  I think the beginning when you find out is the absolute hardest time ever.  We have just come back from a week in Portugal which I never thought to have a holiday again.  So yes it is worth it.  In time it will get easier.  There is a forum on here called Living with Incurable Cancer- patients only.  It is great so many people who are living way past the date they have been given.  I have never been given an expectation date and I don't want to know because it is only a guess and I am living with cancer not dying with cancer.  Sorry for the long ramble.  I just wanted to say you are not alone.  Big hugs.

Lee x

Hi Lee thank you for replying I’m definitely feeling a lot more hopeful especially reading all your journeys, that’s fantastic that you got away on holidays and yea I’m feeling more confident as the weeks go on so fingers crossed crossed it stays like that. I joined the other forum as well 

angie

Hi Leelaloo,

This is the worst part of being diagnosed with breast cancer or any cancer I guess - when your 'active' treatment is over, you are kind of left to your own devices. My BC nurse told me that we as cancer patients could have benefited from a MRI or full body scan every 2 years which makes sense to me - if found early, any spread might be easier to treat or even cure. Problem is that not everyone can afford the couple of thousand pounds it would cost. On the other hand, I think that many oncologists treat metastatic cancer as a chronic disease and many people live with it for decades which is very reassuring especially with all the new breast cancer treatments! We as cancer patients can cope with more than we have ever imagined we could, but it's so difficult at times! I wish you the very best with your treatment and let's hope for many, many years of remission!

Lana xx

I’m on palbociclib tablet 3 weeks on one week off , tamoxifen and bisphosphonate infusion. And you’re right I have tried and I’m glad I have , not had any side effects apart from insomnia . I think I was just panicking about more treatment as years ago chemo and radiotherapy were very severe especially during covid , it’s great I’ve joined this forum as it’s made me feel much better.

thank you 

angie

Hi Angie and Lana,  yes we have endured a lot.  But none of us have much choice we just get on with it.  These forums definitely make me feel better as I can write what I want without upsetting my family or friends and know that everyone on here understands.  It make me feel less alone.  Wishing you both well and big hugs to you both x

Lee x