Kras mutation lung cancer , has anyone got any experience with the targeted therapy Sotorasib ( LUMAKRAS ) ?

Hi Nursemich welcome to the group, but sorry to hear about your Dad. Sotorasib is a new treatment, so you may not connect with someone who is on the treatment already. If these are new symptoms that your Dad is experiencing, I would suggest you speak to someone in your Dads team to make sure these are expected side effects. If the nausea continues over the weekend, I would contact NHS 111.

Hi! Also my first time posting! I have the Kras mutation too and have been put on Sotorasib. Started off on half dose of 4 tablets a day for 2 weeks-was fine-upped to full dose of 8 tablets a day for 2 weeks and had to come off it for 4 weeks because of my liver function. Didn't have too bad side effects then aside from upset tummy.Went back on a half dose for 2 weeks but am now off it again because of my liver and must admit wasn't feeling at all well with loose stools as well as awful pains in tummy which I think was my liver protesting! Have another blood test this week and maybe back on low dose with steroids to try and protect my liver. I am the first patient my consultant has had on it so there doesn't seem to be that much info!

Take care

xx

Hi Metty4 ,

Sorry for late reply! How are you doing now? are you back on the Sotorasib ? My Dad has unfortunately been in hospital due to a chest infection and side effects of the drug, he is home now but struggling with diarrhea and nausea so advised to come of it for 48 hrs and see if symptoms settle! Dad is stage 3 with lymph involvement so not sure if this makes a difference to the side effects! Dad is going to have some radiotherapy alongside the sotorasib for his cough and coughing up blood symptoms to see if that helps with those. 

How are you doing with everything? have you had contact with anyone else on the Sotorasib ? 

Look forward to hearing from you 

Michelle x

Hi Mich2022,

Still not back on Sotorasib as liver function not come down enough-have a blood test on Sunday and consultation Monday and will maybe take half dose Sotorasib with steroids to see if I can tolerate it that way-hate steroids! I am stage 4 and I have to say we think the Sotorasib is working because as soon as I start retaking it my any cough that might have appeared goes so it's just a case of getting the tablets in me without liver damage. I don't weigh very much any more (only about 44kg) so I think the full dose of it is always going to be too much for me.Still don't know of anyone else on it. I had chemo and immunotherapy but ended up in hospital from chemo and then the immunotherapy stopped working which was a real shame! Was never offered radiotherapy-think mine is in lining of lungs .With the diarrhea I did find a super bland diet helped ie bananas/rice/white toast just really very boring to eat though! Hope your Dad manages to get over the side effects soon- my consultant said that the after effects of immunotherapy and chemo can be long lasting and affect the way other drugs work so that is why we are maybe going to use steroids to tackle any inflammation. 

Fingers crossed we both manage to get on with it!

Fee xx

Hi

I've found out i have a  rare/unusual mutation of KRAS. I have Stage 4 lung cancer with metastases in spine, lymph and ribs. I'm in Australia and waiting to hear if there is a clinical trial I can go on. Waiting, waiting - it's hard. 

With immunotherapy and chemo I was told I had a prognosis of 18 to 24 months. It's not a lot of time, given I am 68 and feeling pretty well apart from shoulder and neck pain.

Just thought I would update-was on steroids for a week with no sotorasib then only taking 2 tablets of sotorasib (1/4 dose) plus half a dose of steroids for 2 weeks-liver function getting worse apparently but feel okay so we are ploughing on with steroids and 2 tablets-blood test Wednesday and results Thursday-fingers crossed things aren't worse as I don't have any other options apparently. Hope everyone else is doing okay

Another update.Ended up only taking Sotorasib every other day with steroids as liver function did not improve-consultant thinks it's because of the immunotherapy I previously had which has affected my liver. Anyway, carried on with every other day at steroids at 2 tablets everyother day and had a CT scan which has showed that basically I am stable-hooray so it is actually working even on such a low dose. Am now on 2 tablets every day with steroids and having a 2 week gap before blood test instead of weekly as liver function improved. Keeping fingers crossed I might be able to handle 3 Sotorasib a day soon! Be lovely to hear from anyone else on this! Happy Christmas to all!

Hi Metty4,

How are you getting on now? Hopefully you're still stable with Sotorasib.  I started taking it 3 weeks ago and so far have managed ok on the full dose, but its very early days, and from the posts I've seen I'm kind of expecting side-effects to start kicking in anytime!  I'm also on steroids, just one a day.  I really do feel much better since taking sotorasib so fingers crossed it continues. Hope you're still doing well with it. Wishing you all the best! 

I have shoulder and neck pain too, but haven't been yeat doing any treatment 

Hi! Haqve just come out of hospital having had lung drained. Was on a cruise when I started feeling ill-managed to get home but have stopped Sotorasib atm as liver/stomach wasn't coping. Not certain I will be put back on it now as scan shows progression and I think they are pretty much saying palliative only now which isn't great. Glad it seems to be working okay for you-long may it continue. best wishes