Zero energy!

Hi all. Does anyone out there suffer from extreme fatigue? I’m taking palbociclib 3 weeks on 10 days off, monthly denosumab injections and letrozole daily. I’ve been on this medication for 2 years nearly. 

I find the slightest energetic thing I do…I.e a bit of weeding, hoovering, cleaning, just wipes me out. I do everything at a snails.pace too. It seems to be getting worse. Is it a sign things are deteriorating? 

My oncologist said my prognosis was about 5 years back in 2019 and I can’t help thinking I’ve only got 3 year’s left! I have secondaries in my bones, quite a few!  It’s awful and it’s starting to get me down. Does anyone else feel the same? 

Thank you xx

Are you still on 125? Because a dose reduction down to 100 could do you a world of good. If you have dose reduced, the increasing fatigue could be a sign the palbo is starting to not work. That doesn’t mean you only have three years left! Plenty of lines of possible treatment.

Regarding five years - I know what you mean and sometimes it pops up in my head that well, I am almost 2 years from diagnosis and 18 months on treatment and statistics say X etc. But none of my (many) oncologists have ever given me a time frame nor have I ever asked. No one knows how you will respond to various treatments, how treatments or trials will evolve, etc.  I also know is easy to say that and another thing to live it every day and manage the anxiety, especially in these covid limiting times. To that I try and just go one day at a time and refocus when I start to mentally drift in the wrong direction!

YES!!! I’ve never known such fatigue. I practically have to crawl up the stairs and then I need a lie-down to recover my breath. Then I’m likely to fall asleep or just spend the next hour staring at nothing. It is horrible, isn’t it. I’m on my third cycle of capecitabine (2 weeks of tablets, one week off when you feel like sh**). I was warned that most patients found the second cycle the worst but I was OK. But this one is wiping me out!

However, that’s what cancer drugs do - attack the cells you need. It feels worth it while I know from my blood markers that it’s working. I just hope it keeps working.

My favourite mug says ‘Housework won’t kill you, but why take the risk?” Forget the hoovering and gardening - you are ill. Get someone else to do it!

I hope your fatigue doesn’t last. All the best,

Jan x

Don’t read anything into a figure the Onc has given you. Might be a silly question but are you having regular blood checks? How’s your haemoglobin levels. Mine kept dropping which meant I had to have transfusions. Then they were just low. Shattered all the time. ONC put me on iron tablets and so much better. 

Have you mentioned it to the nurses.

Sorry if you have already done all the above but just thought that I would mention it.