C3 of Ribociclib paused due to sky high ALT levels - liver toxicity

Hi JoMar and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi JoMar,  I am on ribociclib.  I have low neutrophils.  I don't know what ALT levels are?  Oh I just googled it raised liver levels.  I have not been told I have this.

Lee x

Hi Jomar,  I was taken off Ribociclib after 7 months because of liver tox.  My ALT levels were up to 1870.  Ended up in A&E with threatening liver failure.  After a month off I was given Abemaciclib which I have been taking now since March.  Diarrhea was the main side effect which was debilitating for short periods but has subsided now.  Liver is coping well.  Maybe you could ask about that? I wish you all the best.

What is bothering me now are bone pains. I have spine and pelvic mets which have started to hurt.  I take Metamizol Zentiva painkillers but they don't help very much.  I am going crazy because I can't sleep.  Has anyone got any advice or comments?  I have a scan coming up in 10 days and I am reckoning with increased activity.  So on the verge of despair.

Ulla xx

Hi Ulla,  I am on ribociclib, exemastane and denosumab.  I have mets in pelvis, spine, ribs and skull.  I was prescribed morphine both tablet and liquid.  I don't like taking this it doesn't seem to agree with me.  I take tramadol for the pain and cyclizine as tramadol makes me nauseous.  It seems to work for me.  Also walking helps with my pain strangely enough.  I find keeping active seems to be the best, when I sit down the pain gets worse.  The nights are the worst as it does hurt and I keep on having to turn over.  I had radiotherapy on one of the mets in my spine and that also helped to ease the pain.  My oncologist also referred me to orthotics and they ordered a special brace for my spine which I wear when I am walking.  I hope you find some relief for your pain.

Lee x

Hi Lee, Thanks for your reply.  This is so helpful to know that I am not alone.  You are right. The pain is worst at night and it does help to move.  I will ask about the brace for my spine because sometimes it just feels like my back can't support my weight. (I am actually pretty skinny. So no extra pounds to carry!) 

Best wishes, Ulla xx

Hi Ulla,  my oncologist is really good and pretty forward thinking.  The brace does support my spine and protects it, can't say I am particularly skinny .  Sounds like you need stronger pain killers.  I also bought an orthopedic mattress and ergonomic pillow as I have to sleep on my side.  I am managing the pain okay I try and not to think about it too much.  Just keeping to my normal routine as much as possible.  Big hugs.

Lee x

Hi Lee, So glad to hear that you are managing the pain.  If you have a bit of control I think it helps your state of mind, the balance between glass half empty or half full.  So important.  I was admitted to hospital yesterday because the pain was driving me up the wall and have been given morphine Infusions.  Must admit the twilight zone before drifting off to a much required sleep was bliss.  The side effects were not so great but at least I could sleep.  We are now working on pain management. So I feel a good bit better.  Thank you for your support.  Hugs, Ulla xx 

Hi Ulla, I am sorry to hear that you were admitted to hospital.  Yes morphine is good sometimes when you need it.  When pain is really bad, I take a tramadol and morphine tablet, oncologist says this is okay.  I hope they get your pain under control soon. Big hugs.

Lee x