Feeling down and tired

Offload as much as you like Tandy, with all that going on at your young age I you must be in a bad place.  I’m on the same drugs and jab as you and you might find it hard to cope with but it will get better.   When you have your first quarterly scan and the oncologist tells you everything looks good, you will feel much more positive.  I don’t know how I would cope if I didn’t have my husband’s support and had to work too.  You need a good friend and maybe try to find a support group in your area.  
very best wishes to you.

Hi Tandy6

I'm on same treatment Ribociclib, Letrozole & Debosumab just started cycle 6 I found the first couple of cycles a bit tough but side effects have settled & I'm feeling ok just a bit tired. I have mets to my lungs, spine & pelvis  I had my oncologist appointment last week for results of first CT scan since starting treatment & all is stable bones healing well & a very slight regression to lung tumours .... offload here,  it's a safe place with lots of support.

Good luck with your treatment going forward. 

xx 

As everyone else has said offload and ask as many questions as you wish to…it’s a total rollercoaster at first and I think just being ill means your body is under great stress which is knackering in itself.

The emotional and psychological shock also takes a toll. I’m a year on from where you are with bone mets in spine, sternum hip and one of my legs. I’m still stable though no real significant changes for the worse…

cuddle your cat, cry and feel sorry for yourself, this is hard to deal with. Try to sleep and rest as much as possible and give yourself time to process this terrible news…

I was started on letrozole plus ribociclib but I’m switching to palociclib as my liver didn’t like the ribociclib..it’s also an inhibitor so hoping it carries on working for me.

try to take care of yourself and once the treatment plan starts you may feel a bit more in control, check in here anytime 

Hi Tandy

l have a very similar story to you but I had the whole diagnosis in one go in December and am really struggling with the damage that the cancer is doing to my bones. I am on the same drug therapy and have just had my first dose of denosumab and ribociclib. I was already feeling completely wiped out from the Letrozole so was worried how much worse this would be. The good news is that it hasn't had too many side effects and I went on the advice if others and moved when I took my meds from am to pm which had definitely helped as I sleep through the worst of the tiredness. There is a lot of support on here and people who understand. I also live on my own and am so thankful to have a safe space to chat when I need to.

x Thea 

Hi Thea ,

I am about to start denusomab and ribociclib with fulvestrant though (anastrazole has stopped working for me ) 

Not sure what to exoect so its good to hear youre doing ok so far . Any ither tips or things I should do to prepare ?

Hi Tandy6. I’m so sorry about your diagnosis. I was diagnosed with stage 1 on a Wednesday and stage 4 on the Friday. Horrific. I’m 51. That was in July. I was a wreck for three months but I slowly pulled myself together. It’s a grief reaction and it takes time to recover - it comes and goes in waves and never fully leaves you.
i Went back to work full time in November because I needed the distraction. Very few people know about my cancer and it’s great to just be me again. 
It’s hard to know if the drugs made me tired etc because I was so emotionally broken. I think the meds did knock me around initially but now, apart from the bloody letrozole, I really do feel fine. A scan showing regression in November helped my mood and (most of the time) I feel positive about the future. 
please give yourself time to adjust and just know you will feel better soon. I wish you all the very best. 

Thank you to those who replied to mg post. I'm feeling a bit better now, even went swimming last night (first time in over a decade - my arms are killing me!!). I was struggling with chronic fatigue for months before my diagnosis, not sure if the Letrozole has made it worse, but I could sleep for 12 hours and still feel exhausted! Had my first denosumab jab yesterday and started the ribociclib today, so fingers crossed they don't make things any worse.

It's also not helping that I have to go to a hospital an hour away, even though there's a state of the art cancer centre just 2 miles up the road.  I live in Liverpool and the Clatterbridge Centre is nearby - but they couldn't get me an appointment there so I saw a Clatterbridge consultant up in St Helens. I was assured I'd only need to go there once a month, but that's already changed to 4 trips a month because of blood tests etc. I know a lot of people probably have to travel much further for treatment than me, it just seems crazy though when there's a centre literally up the road! I am going to speak to my consultant about it though, see if I can go somewhere a bit closer. At least that would be one less thing to stress me out.

Thank you again, having a place like this to vent but also hear good news is so helpful. Big hugs to you all. X

Hi Tandy, glad to hear you are feeling a bit better.  I’m surprised you need to go to the hospital so much.  Today is my last day of my ‘week off the Ribociclib’ and I go to the hospital tomorrow to collect my tablets and get my Denasunab injection.  I had my blood taken on Monday but at my local surgery and I don’t see why you can’t do that too.  My oncologist will be phoning soon and I’m hoping my scan was good. 

Best wishes to you.

I sent a reply to your other strand and hope you got some good tips from the people who are here. I've learnt so much already thanks to the support from this online community. They are a great bunch x

KN1 I know exactly how you feel. I got the whole diagnosis of stage 4 and mets everywhere all in one 10 mins session - most of which was me shaking my head and bursting into tears - it was so unexpected and I was on my own. You don't expect when youre in your 50s to hear the words incurable cancer and palliative treatments only.

I've been picking myself up and trying to cope with the emotional and physical challenges. It helps so much to hear you say you had a good scan showing that things are improving and that gives me hope too. 

Tandy6 - I was given tables and a delivery bag at the last hospital appointment to take to my GP surgery and get my nurse to send the bloods off. They realised that I can't drive at the mo and my daughter was driving 3hr round trip from Liverpool to Newcastle to take me to my appointments. Hope you can get something similar set up with your chemo centre. I also had a call from my GP practice from the nurse once she heard my diagnosis and she has given me her number in case I need advice etc. so it might be worth you ringing yours to see what their set up is for cancer patients as most do have different systems for those of us who are living with cancer.