Sorafenib - managing side effects

Hi my husband is also on Sorafenib. He is half way through his second course. He has stage 4 HCC and this is his only option. So far he hasn't had any nausea so I cannot be of any help other than suggest that he could ask for a different brand of anti nausea medicine. Some people use ginger taken in tea or peppermint can also have a calming effect on the stomach. Can I ask a question - has these side effects got worse the longer he has taken it? Lastly can I ask if the Sorafenib is doing it's job. My husband's prognosis back in November was 3 to 6 months however 3+ months and his blood results have improved and he feels no different apart from a little more tired. Thanks.

Hi there. I think you and I are very much in the same boat Snowey1 . My hubby was diagnosed last July. Sorafenib is his only treatment option. He had his first scan since his diagnosis in December and his tumour has not grown. His bloods have been OK as well. 

That has given him an incredible boost and we have booked holidays. 

He has good days with his meds.....and some not so good. He is often up through the night with diarrhoea so he can be tired. There is no rhyme nor reason for the nausea...it will often go as quickly as it arrives. 

His Consultant has said that he can take a break from it if it gets too bad. Hubby is not keen though. 

The side effects have been fairly constant ...his Consultant has said that some patients find that they can ease up over time. We are looking forward to that !

Best of luck to you both 

Thanks. I do hope everything settles down and that everything progresses well for you both.  X

Hubby has had more bouts of nausea of late. The diarrhoea is fairly constant.

The nausea meds he was prescribed don’t seem to help at all. 

I have suggested to hubby that he should ask his Consultant about reducing the dose of his Sorafenib ( he has 800 mg a day ) but he won’t,  as he thinks that it is his only chance of life.

He is eating less each day because of all this......and he is finding it harder to manage his ( insulin dependent ) diabetes as a result.

I am trying to stay positive though ......not always easy 

I am sorry to hear that things are not as good at the moment. I can totally understand both points of view - higher the tablet strength the more potency to stop the cells! That is how most people will think although I am not sure it does actually work like that. Maybe your specialist nurse can help more than you are actually asking for. As your husband gets maybe weaker from the debilitating symptoms he should remember that the tablets can only be continued if his bloods are above the lower parameters for recommended use. So what is important is that he can stay on the tablets for as long as possible by staying as fit as he can. If he is putting his body under extreme pressure it will react and he won't remain fit and risk losing the tablets completely. How about discussing with your medical staff if your husband can have a trial reduction on the understanding he can increase the dose again if everything settles. Quality of life is as important as duration for you both. Hope that doesn't sound too harsh - sorry. I am sure at some stage my husband will go through exactly what you are both going through now. Its do hard. Thinking of you both. Best wishes.

Hi

I am SP from Malaysia , would like to know how are both your hubby doing with sorafenib treatment on HCC.

My hubby is being given this option as final treatment , we are reluctant to take it as we are worried that health condition may get worse rather than improve with this drugs,

Appreciate your reply.

Hi SP

i am so very sorry that your husband is not well and that he has to make this difficult decision.

My husband was given his terminal diagnosis in July 2017. He was told that his life expectancy was 7 months. His cancer was inoperable and not suitable for radiotherapy or chemo. He was offered sorafanib and told that , on average, it had provided an additional 2 months of life however a number of patients were surviving longer.

As it was the only treatment option available my husband was desperate to take advantage of anything that might extend his life. He died in April 2018 , so he survived 9 months after diagnosis.

He did have side effects , particularly nausea and diarrhoea. However he was happy to deal with that as the drug gave him hope that otherwise he wouldn’t have.

Unfortunately he developed sepsis in September 2017. We assumed his symptoms were caused by the sorafenib rather than infection. We tended to attribute every adverse symptom or reaction to the sorafenib. After his sepsis diagnosis we were resolved to tell ourselves “ don’t always blame the sorafenib”

Ultimately it is up to your husband. I think my husband would make the same decision again. Every extra day is precious.

Best of luck to your husband

Leonie

Leonie

Thanks so much for replying. I am so sorry to know your husband has left.

My husband has HCC operation 9 years ago and another HCC operation Sept 2019 but since then , his AFP is on scaring increasing rate (12,000) and more and more tumors found and grow at great speed.

He has done TACE twice and both no good response. Sorafenib seems and is the last option for him. Doctor said in view of his tumor growth rate , the maximum life expansion with sorafenib is 6 months.

Currently his Liver function is still good. We are in a dilemma by taking Sorafenib he may not be able to stay as "healthy" , meaning prolong life at bad quality life experiences fighting all those side effects.

Again , appreciate your reply and warmest well wishes to you and family.

SP

Oh that is such a tricky situation. I was happy for John to take the Sorafenib , and deal with the side effects, because we were both desperate to give him extra time. As I said , in the end he got ( possibly) two months longer. 

With the benefit of hindsight I wish he hadn’t taken the Sorafenib as the diarrhoea and nausea were hard for him..however it gave him hope and that was priceless 

Leonie