Sorafenib Experiences

My husband also has incurable liver cancer and was put on Sorafenib to start with, He began on the highest dose which he was unable to tolerate. He coped better with a decreased dose. His main side effects were nausea and fatigue. The drug seemed to work for a while but then stopped so he has been put on another oral treatment called cabometyx. I'm not sure if this is working as the cancer marker in his blood has increased for the 2nd month in a row. He is due a scan next week so we will know more then. I am not feeling too optimistic to be honest. All I can say is that the chemo has kept him alive since his diagnosis in January so I should be thankful for that. Best wishes,

Thank you for sharing your husbands experience with Sorafenib, I'm really appreciative of you taking the time to reply. Apologies for my delayed response, I didn't get any notification that someone had responded. 

We're still waiting for Dad to get treatment. Unfortunately the biopsy they need before they can start tablets wasn't sufficient enough for analysis, still waiting on another date for a second attempt. His oncologist called yesterday to discuss most recent chest CT from beginning of December and unfortunately the more detailed scan has shown several small areas of cancer in his lungs. They are still happy for him to have sorafenib, once they get the biopsy sorted of course. It's hard to know given where we are if this extra delay will be detrimental or not. Its been almost a month now since sorafenib was offered and he still isn't on it though to be fair Dad would like to have Christmas without the side effects and I think we should probably be appreciative of the fact that he has that choice.

Very best wishes to you and your husband x

I also have HCC. Started Sorafenib just before christmas 2020 but had bad initial reaction - sickness diarrhea nausea vertigo headaches so I stopped I, Then in the New Year my blood platelet levels were too low so I  couldn't try again until a month ago. Same initial reaction but I persevered.. After a couple of days things improved a bit but Trouble with daily diarrhea, incredibly itchy scalp and headaches. March platelets too low so have stopped again pending more blood tests and a scan under consideration.

Overall I seriously doubt that the side effects and detriment to my quality of life are worth what is only going to buy me a couple of months extra life..

Cardiff Clown

Thanks for replying to my post. I'm not seeming to get notifications when someone does so apologies for the delayed response. My Dad did two months but he had much of the same side effects as you have experienced. They stopped it 4 weeks ago and in a video call with his oncologist today they reported his recent CT showed the liver was unchanged but lung tumours had in fact grown slightly. His oncologist has said as Dad is feeling well off treatment he isn't recommending going back on treatment. So we seem to have reached the let nature take its course stage.

Thanks Jules, I am in a similar boat to your Dad in that Consultant and I have agreed that Sorafenib not worth the trouble and to let nature take it's course. All the best to you and your Dad.

Thank you, best wishes to you too.

Hello, I have just been diagnosed with Stage C liver cancer (as categorized by Barcelona Clinic LiverCancer Staging system) and been put on NEXAVAR (Sorafenib). I am now into week 3 and have many side effects, some changing as the weeks progress, but my main issue is with exhaustion. I was wondering if anyone could tell me of their experiences and for how long should it take for one’s body to acclimatize ….if it is going to! This is my first time writing so hopefully I am connected!

Hi Tony,

I can only go by the short period of time my Dad was on Sorafenib and from conversations with his consultant and specialist nurse. My Dad didn't experience the fatigue you speak of, it's seems everyone's side effects can vary. His main issues were a rash, hair thinning and upset stomach. These didn't settle as such rather they were managed with other meds to counteract or improve side effects. We're you given a 'pack' with your sorafenib which contains various medications to help with side effects? Having been off the meds for 4 months now everything has subsided bar the hair thinning which seems to now be permanent. You'll have no doubt seen the above messages where I mention that in Dad's case they decided to discontinue treatment. Positively though, he remains pretty well considering. Wishing you all the best & I hope the side effects you are experiencing settle or can be helped by the additional medications they can give you.

Hi Jules, very kind of you to reply so promptly. Very interesting to hear of your Dad’s ‘Journey’, so to speak, and glad to hear he seems to be doing pretty well. I have an appointment tomorrow with my doctor (who is a Gastro doctor….here in Spain Liver cancer is dealt with by liver specialists, in fact my biopsy was sent to the university hospital to be discussed by 5 doctors who meet every week to discuss only liver patients and they decided the only course of treatment for me was Sorafenib) so I will be going with a list of questions and comments regarding how I have been feeling during these first 3 weeks. Exhaustion is my main issue, I have spent most of this time in bed, often asleep. I have no appetite so am loosing weight and so that obviously compounds my fatigue. Wife is despairing, of course; eating very little is not very clever but I cannot force food down (although I do not feel actually sick). Any suggestions for easy eating diet, she asks!? I am very interested in the ‘Pack’ your Dad was given, maybe I will be given something once they know how my body is reacting. 
Thank you again and best wishes to your Dad.

Tony, as previously recorded I had to come off Sorafenib and side effects cleared up apart from the fatigue. I suspect it may be as much a symptom of the cancer as a side effect. Best of luck regardless.