Sorafenib Experiences

Hi there, so am I right that you stopped taking it a second time in March? I am wondering what you have been taking since then, which was 6 months ago? Yes, I am concerned that my fatigue is cancer related more than the effect of NEXAVAR, but I am hoping that 3 weeks of taking it is still early to be able assess if my body is going to settle down? I suppose that really is the question I would like an answer to, how long to put up with the side effects! I have another issue that I am finding really annoying/depressing….Prior to starting NEXAVAR I had periodic hearing loss, deafness in one or both ears that clears as quickly as they block, completely cotton wool head. Hoping to get a head scan next week to have it checked out as no evidence of wax, etc. The temporary deafness and the exhaustion are my main issues, if I can clear my head I reckon I can get to grips with the tiredness and other side effects. Upside of pills is I have not needed to shave for 3days now! 
Thank you for your very prompt reply, I appreciate both your and Juless’ response. How are you??? Doing well I very much hope. Best, Tony

Hi Tony, I just decided that the side effects weren't worth any potential gains and my consultant felt that it compromised my blood platelet levels too much. He ignored my problems with side effects and was only interested in getting the Sorafenib in.

The fatigue is still there but not as severe as when on chemo.

My current situation is that I am being monitored and supported by GP and local cancer hospice who will respond to any symptoms as they develop. Consultant gave me 4 - 6 months in April so I am very much in the waiting room, but my number hasn't been called yet Best wishes, Geoff.

Hi Tony 

My partner Bob was diagnosed with liver cancer 4 yrs ago this December. He went on Sorefenib 6 mths later. 4 tablets to be taken every day in the morning. Main side effects were hair thinning, Fatigue, lack of motivation. 6 mths of taking the drug hair thinning slowed down, occasional bowel issues, given meds for this. Generally coped well overall. He started with problems walking 18 months ago. His feet were really sore and he developed callouses on the soles of his feet, this impacted on his walking. This is another common side effect. Regular visits to chiropodist helped but still has issues today. The drug has done its job the tumour has not moved and the growth has been minor and nothing to worry about. 

After a routine scan 18 mths ago there has been a slight increase in size. When we started this journey Sorefenib was the only drug available to us, if it didn't work he would go onto clinical trials. Luckily there is now another alternative drug fir his cancer. He was put on Regorafenib. This new drug only 3 a day and only to be taken for 3 weeks a month, so a weeks respite. New drug so body had to readjust, so side effects started again not as severe apart from the fatigue. He is 72 and an avid gardener so the fatigue has been a big issue for him. He is OK if he keeps going but if he sits down at lunchtime he can just nod off and he can sleep for up to 2 or 3 hours but not every day. Our oncologist has said that to sleep when needed and he lucky as some people really struggle for even longer periods of needing to sleep. His explanation  this is a very powerful drug and the body reacts with the side effects.

After a regular bloods it showed that his Thyroid was being effected and this also added to his fatigue levels. He had to stop the chemo and take Thyroxin until his Thyroid kicked back in. He was off the chemo for approx 6 weeks. Back on the chemo and doing well. 

After being diagnosed almost 4 years ago and only 2 short hospitalisations, which were water infection, and bowel infection both caused by his suppressed immune system he is now in stabilisation mode. His cancer has not grown or moved so long may this continue. 

Everyone has a different journey we feel very lucky the path we are on at the moment has not impacted too severely on our lives. We stay very optimistic and upbeat which has certainly helped us.

Take care and stay positive

Hi Geoff, this is Winnie here, Tony's wife, he is too tired to write, I am afraid, so he says thank you for your messages and support, All info is important at the moment as this is all new to us. 

Appointment with doctor on Monday was good in so much as his blood test was more or less the same as the last one and so it seems his liver is coping. He has just been given medication for his diarrhea, lack of appetite, nausia ( although he does not actually feel like being sick) and something to help him sleep. Hopefully these will do the trick as he is loosing so much weight and obviously affecting his energy levels.

It sounds like there is nothing realistically that can help with his fatigue. He sleeps most of the day now and can hardly walk the dog a few hundred yards. He realises that he must eat but I cannot force food down him. We are having to change our eating pattern from eating our main meal at night ( Late, typical Spanish style) to lunchtime when he feels more inclined to eat. Any diet ideas gratefully received!

He had a head CAT scan today to see if we can determine why he keeps loosing his hearing, all paws crossed that it proves to be just a problem with his inner ears, completely unrelated.

 So, for the moment, we persevere with Sorafenib and hope he gets more energy! 

We wish you all the best, Geoff, as you say, your number has not been called yet so keep doing what you are doing cos it seems to working!!!! Keep in touch.

Hi there, Tony's wife here, thank you so much for your message, Tony says much appreciated. He is too tired to write so here I am today.

As I have just said to Geoff in previous comment, it is great to get info first hand and support. As we are new to this rather different game it is really kind that you have taken the time to give us your experiences so far. 

I won't repeat myself again regarding how Tony is getting on but it is very interesting to read of Bob's 'Journey' so far and it certainly has given us a better idea of what to expect ...or not....in the near future and hopefully the distant future, too! Tony has always been very active, we have always had a boat and recent past a large motorhome for more than 15 years. He is getting depressed generally, understandable as he is unable to even walk around the house without needing to go back to bed, but it is worrying that maybe he will not be able to resume those activities again. I do not want him to feel he must stop or lower the dose as the consequences are not good but it seems Bob has got through the last 4 years with perseverance and some luck, as you say. So all paws crossed Tony can get to grips with this fatigue then I think he will be able to cope with the other things thrown at him.

Best wishes to you both, Winnie