Life is precious

I'm on the same drug regime - just started on Letrozole a month ago and the other two last week. I had some tummy problems after the jab but the only other side effect is being sleepy all the time. 

Do you take your tablets together in the morning or at night? I was wondering if it makes a difference as I often feel tired mid morning. I slept twice today which is not like me at all.

Also they did a big deal of scary stuff about infections - what do you do about that?

On the positive side I have to say what makes me happy is knowing that this is making me better and giving me a chance at life. I want to be here and not just survive on this but be a better person because life is more precious with the knowledge that without the diagnosis and medication I would not have this chance.

Hi TheaT, I remember the first day when I was given 3 boxes of Ribociclib, 1 of Letrozole and the booklets with information and telephone numbers.  So much to take in and when she mentioned that if I get an infection or temperature I must go to A&E and show my card which says I’m at risk if neutropenic sepsis I was in a real panic.  However, I’ve not had any problem despite having a cough and cold.  I said I wanted to take the tablets at bedtime and was told that was OK.  I do this because I was on Letrozole for 7 years after my primary cancer and I knew I would get hot flushes…..but they seem to be when I’m in bed (and not every night).  My totally non medical opinion is that the hours after I swallow the tablets that have side effects I’d rather be asleep….probably only makes sense to me!

After 2 cycles the Ribociclib became 2 boxes then just 1…..my neutrophyls were too low.  Now I’m settled into my routine with no problem with the Denasunab injection.  Some days I’m very tired others not so much….ive accepted that this is my life now and I’m grateful for it.

Best wishes

I really appreciate hearing how you have got on with the medicines and especially that you've had coughs and not been rushed off somewhere! I know they've got to give us all the info but it was scary stuff. I've kept taking the Letrozole in the morning and have moved the Ribociclib to after dinner but am thinking as you said that maybe its better just before bed. Thankfully the worst of my hot flushes is over but I do still get glowy (if that's a word!) and that's not a bad thing in the cold of winter nights :) I can cope with some days being bad if others can be good. Life is what its about and keeping it as good as it can be! I am grateful to be starting on the treatment and the hope it gives especially hearing how its kept you well fr over 7 years - lets hope there are many more good ones ahead for us both x

The 7 years on Letrozole was after my primary breast cancer….I thought I was done.  This metatastic was only diagnosed June 2022, I had my hip replacement in the July and stated on the Ribociclib with Letrozole ….  I’m on my 17th cycle

wow! I've been given a years worth of appointments so know I am in for a long haul but 17 - whew! I am worried about my hip as its been giving me a lot of trouble and I now waddle rather than walk and had difficulty getting off the chair last week. I'm wondering if its bone mets - and if I can ask the dr about radiotherapy. They did this for my shoulder and it has helped a bit. What was your journey with the hip? Was it cancer related? 

Don’t you know what your mets is?  As I said in an earlier post I was absolutely fine and after a line dancing session i went shopping and getting out of the car I nearly fell in to traffic with the pain in my hip.  Thought it was sciatica….I was limping. for 2 weeks then I saw my GP who sent me for an X-ray.  That led to a bone scan and that’s when it really started.  We hired a wheelchair as hip could snap at any time.  Had to go to a specialist orthopaedic hospital for a CT guided biopsy that confirmed a tumour on my hip/femur ….the replacement surgery was 3 weeks later and it went very well and after 2 months I started the targeted therapy.    What led to your diagnosis?

My diagnosis came after I damaged my rotator cuff in my shoulder and then found a lump in my breast. I got the whole job lot in the first meeting where I went to find out what kind of breast cancer - the said I had mets in my lymphs, lungs, liver and bones and then listed all the areas in my bones that included my spine and hips. 

When I went to the physio about my shoulder she said that I needed to find out more about my hip and spine and warned me that I could be in a wheelchair at any point. Like you I was told (prior to diagnosis of cancer) that I had sciatica and had no idea why it was so erratic. During the recent treatment for my shoulder my walking has worsened so that I can just about hobble around. My oncologist won't do any more radiation or consider any other treatment until I have several more months of chemo. So I am nervous about how this will work with my hip. 

It sounds like you were lucky to get your hip sorted before you started treatment. What exactly did they do for targeting the mets on your hip?

Sorry to hear you have mets in areas other than your bones.  So far, it’s just my bones but I know that can change…..there’s a concern about my last bloods that showed an increase in something in the liver….will be having blood taken on Monday then my consultant will phone on the Wednesday and I’ll ask about it then.

When is your next scan?  It should show if you have a hip problem surely?  I’m on the same targeted therapy as you…..when they replaced my hip it was because it was very diseased.  Some people think because they did that my cancer has gone….if only!   Talk to your breast care nurse and tell her walking is difficult for you now.

best wishes to you.