Sorafenib (Nexavar) to lower AFP

emirl
emirl Member Posts: 6
edited March 2014 in Liver Cancer #1
My father was diagnosed with liver cancer recently, I presume they caught it early as they'd noticed the slow rise in his AFP levels and were scanning him regularly. After initally finding nothing they eventually found a 2cm tumor which was resected in March with good margins. He was given a 5yr survival chance of ~60% which is good for this type of cancer.

Since the operation his AFP's have rocketed, last check had them in the (up from 600's the week before) 2000's but despite repeated scans nothing could be found.

He is dealing with two specialists (surgeon and, presumably, a hepatologist) and is getting mixed messages. One of them (let's call him Doctor A) is recommending he go on Sornafenib to try to lower the AFP's / kill whatever is causing them. The other (Doctor B) is saying wait 6 weeks and then they'll run all the scans again.

We told Doctor B about possibly using Sornafenib and he dismissed it as something only used in cases where there's little hope.

We asked them to talk to each other and to straighten out the course of action and they've come back agreeing on the 'wait 6 weeks' option and re-scan.

My question is; why was Sornafenib even vaguely discussed as an option if it's only used in late cases (which I don't think my father is)? And should he be on it now, are there any down sides to him taking it now?

Does this wait and see approach seem normal in cases with very high AFP's but no visible tumor?

Comments

  • SarahD
    SarahD Member Posts: 139
    #2
    Does your father have any
    Does your father have any underlying liver disease? Why were they checking his AFP in the first place when they found the cancer? Also what did the pathology report of the resection show? Usually if there is vascular invasion they will start nexevar
  • emirl
    emirl Member Posts: 6
    #3
    SarahD said:

    Does your father have any
    Does your father have any underlying liver disease? Why were they checking his AFP in the first place when they found the cancer? Also what did the pathology report of the resection show? Usually if there is vascular invasion they will start nexevar

    Sorry should have said, they
    Sorry should have said, they were monitoring his AFP as he has haemochromatosis and they knew that this could lead to cancer. His liver was judged mildly cirrhotic but was in good enough condition for them to consider resection an option.

    Not sure what the pathology report showed, is it in that report I'd find out if there was vascual invasion? If there was vascular invasion does that equate to a 'low hope' case where nexevar would be considered the best / only course of action?

    From what I've read online nexevar is used to prolong life for a few months, however, I just recently read in a posting on this site where someone has been on it for 2 years or so. I'm confused as to when it's used, does vascual invasion mean there's nothing else they can do for the patient?
  • slg
    slg Member Posts: 200
    #4
    emirl said:

    Sorry should have said, they
    Sorry should have said, they were monitoring his AFP as he has haemochromatosis and they knew that this could lead to cancer. His liver was judged mildly cirrhotic but was in good enough condition for them to consider resection an option.

    Not sure what the pathology report showed, is it in that report I'd find out if there was vascual invasion? If there was vascular invasion does that equate to a 'low hope' case where nexevar would be considered the best / only course of action?

    From what I've read online nexevar is used to prolong life for a few months, however, I just recently read in a posting on this site where someone has been on it for 2 years or so. I'm confused as to when it's used, does vascual invasion mean there's nothing else they can do for the patient?

    Nexavar
    Hi Emirl,
    My husband has been on Nexavar (sorafenib) since January 2010 and he is doing quite good. His AFP level was 476 in January and is now below the normal range. He is 2nd stage of liver cancer with Hep C and Cirrhosis. He had numerous tumors in January had a procedure called TACE in January and again in March. In the last CT Scan it showed that there are no new tumors and the ones that were once there are not seen!!!
    I would suggest reading up more on Nexavar and possible called them and getting more information direct from them. They have great nurses who can answer a lot of your questions. Keep in touch.
    SLG
  • SarahD
    SarahD Member Posts: 139
    #5
    emirl said:

    Sorry should have said, they
    Sorry should have said, they were monitoring his AFP as he has haemochromatosis and they knew that this could lead to cancer. His liver was judged mildly cirrhotic but was in good enough condition for them to consider resection an option.

    Not sure what the pathology report showed, is it in that report I'd find out if there was vascual invasion? If there was vascular invasion does that equate to a 'low hope' case where nexevar would be considered the best / only course of action?

    From what I've read online nexevar is used to prolong life for a few months, however, I just recently read in a posting on this site where someone has been on it for 2 years or so. I'm confused as to when it's used, does vascual invasion mean there's nothing else they can do for the patient?

    My father was diagnosed with
    My father was diagnosed with hepatocellular carcinoma march 2010, he underwent a resection may 21, 2010. He has no significant past medical history other than hypertension and diabetes, both controlled. The scary thing about my dad was his AFP was completely normal. My dad's pathology report showed vascular invasion. He also had clean margins which means that cancer cells havent invaded surrounding liver tissue. Vascular invasion means that the cancer cells have invaded the blood vessels. Doesnt mean it is a low hope case just means there is a higher chance of recurence of the disease. We havent followed up the oncologis yet but im assuming they will put him on nexevar because of the invasion to supress the cancer cells growth, if if there is any circulating around. If your father was a low hope case they would tell you I think its a good idea to do as much as possible to prevent recurrence, diet, mental health....everything. How old is your dad? mine is 54 never been sick a day in his life, this sucks no matter what. My dad is doing well now he lost alot of weight but they got all of the cancer out. Have to look on the bright side!
  • emirl
    emirl Member Posts: 6
    #6
    SarahD said:

    My father was diagnosed with
    My father was diagnosed with hepatocellular carcinoma march 2010, he underwent a resection may 21, 2010. He has no significant past medical history other than hypertension and diabetes, both controlled. The scary thing about my dad was his AFP was completely normal. My dad's pathology report showed vascular invasion. He also had clean margins which means that cancer cells havent invaded surrounding liver tissue. Vascular invasion means that the cancer cells have invaded the blood vessels. Doesnt mean it is a low hope case just means there is a higher chance of recurence of the disease. We havent followed up the oncologis yet but im assuming they will put him on nexevar because of the invasion to supress the cancer cells growth, if if there is any circulating around. If your father was a low hope case they would tell you I think its a good idea to do as much as possible to prevent recurrence, diet, mental health....everything. How old is your dad? mine is 54 never been sick a day in his life, this sucks no matter what. My dad is doing well now he lost alot of weight but they got all of the cancer out. Have to look on the bright side!

    I will have to find out
    I will have to find out about the pathology report and whether there was vascular invasion. My dad also has diabetes (type 2) which he developed late in life (he's 75). Same as yourself my father has never been sick before and is now struck with this, I am hopeful though that he has had it caught early, he hasn't shown any symptoms at any stage and like i mentioned before the docs put his 5 yr survival chances at ~60% which is good for thei type of cancer.

    I'm just worried that not putting him on Nexevar could be a bad thing, waiting 6 weeks before a re-scan also seems insane as presumably with such high AFP there's something going on somewhere.
  • ljw1121
    ljw1121 Member Posts: 22
    #7
    nexavar
    Hi. I was diagnosed in July of 09 with metastatic liver cancer to the lungs after a liver transplant in 07. My physicians decided to start me on Nexavar as soon as my diagnosis and I have been on it since. I actually started in Oct. 09 and remain on a daily regime of 400mg twice a day and will continue to do so as long as there is no worsening of my cancer. I have had good results with it and believe that it is working. No new growth in my tumors and no new ones. They remain at status quo. Nexavar is a chemo that definitely has its bad side effects but they do get much better after a while. I had to go off of it for a week at one point to get my side effects under control but went back on it afterwards. Your dosage is adjusted to fit your tolerance of the med. I have been back on full dosage again for some time and now most of my side effects have improved or disappeared completely. From what I was told, this is normal. If u experience bad effects from the chemo and they adjust your dosage, once you resume the chemo things are better. This chemo is an ongoing treatment indefinitely. I'm fine with that because it allows me to continue to live my life as best I can. Positive attitude is a must!!!!!!!!! Never give up!!!! My AFP levels have always been normal even though I have cancer so I can't comment on that. As far as I'm concerned, waiting would not have been an option for me. This is only my option!!!!! I am not telling you what you should do. Unfortunately you need to weigh your options and make your own mind up, but I believe that if I would have waited for treatment things may have worsened and then what alternative would there have been. I'm a single mom and I don't want anyone else but myself to determine my longevity. You might suggest another scan earlier than the 6wks and see if there's any change. Nexavar may be listed as a last resort, but u have to realize that there isn't anything else out there for liver cancer. Trials, yes, but Nexavar is it as far as chemo treatment. Only thing that is FDA approved for HCC. When we receive this diagnosis it's devastating and sometimes we only grasp half of what is said, so it's good to have a site like this to turn to others. I wish you well and let me know how things turn out. Stay positive!!!!!!!!! Another suggestion is to get in touch with Nexconnect. It is a contact resource for people on Nexavar. There are registered Oncology nurses that you can talk to with any concerns regarding the Nexavar. Just remember that only u can be the true advocate for yourself and your healthcare.
  • stage4liver
    stage4liver Member Posts: 46
    #8
    ljw1121 said:

    nexavar
    Hi. I was diagnosed in July of 09 with metastatic liver cancer to the lungs after a liver transplant in 07. My physicians decided to start me on Nexavar as soon as my diagnosis and I have been on it since. I actually started in Oct. 09 and remain on a daily regime of 400mg twice a day and will continue to do so as long as there is no worsening of my cancer. I have had good results with it and believe that it is working. No new growth in my tumors and no new ones. They remain at status quo. Nexavar is a chemo that definitely has its bad side effects but they do get much better after a while. I had to go off of it for a week at one point to get my side effects under control but went back on it afterwards. Your dosage is adjusted to fit your tolerance of the med. I have been back on full dosage again for some time and now most of my side effects have improved or disappeared completely. From what I was told, this is normal. If u experience bad effects from the chemo and they adjust your dosage, once you resume the chemo things are better. This chemo is an ongoing treatment indefinitely. I'm fine with that because it allows me to continue to live my life as best I can. Positive attitude is a must!!!!!!!!! Never give up!!!! My AFP levels have always been normal even though I have cancer so I can't comment on that. As far as I'm concerned, waiting would not have been an option for me. This is only my option!!!!! I am not telling you what you should do. Unfortunately you need to weigh your options and make your own mind up, but I believe that if I would have waited for treatment things may have worsened and then what alternative would there have been. I'm a single mom and I don't want anyone else but myself to determine my longevity. You might suggest another scan earlier than the 6wks and see if there's any change. Nexavar may be listed as a last resort, but u have to realize that there isn't anything else out there for liver cancer. Trials, yes, but Nexavar is it as far as chemo treatment. Only thing that is FDA approved for HCC. When we receive this diagnosis it's devastating and sometimes we only grasp half of what is said, so it's good to have a site like this to turn to others. I wish you well and let me know how things turn out. Stay positive!!!!!!!!! Another suggestion is to get in touch with Nexconnect. It is a contact resource for people on Nexavar. There are registered Oncology nurses that you can talk to with any concerns regarding the Nexavar. Just remember that only u can be the true advocate for yourself and your healthcare.

    What I was told about AFP's
    What I was told about AFP's is in some people they are definitive markers or speak up when the cancer is present, in others with the same cancer they may not elevate. In my case I was at 6800 when diagnosed, then it dropped to 3500 after resection of 13.5cm tumor and then after my TACEdb they are down to a 1000, still have a ways to go to get under 10 but hey i'll take the downward trend! It makes sense in my situation as I still have 6 small nodules in my lung and 1 on my adenal. I'm not on Nexavar yet but think it's coming unless they have a different plan to get rid of the rest at my next appoint.

    BTW 41yrs old, diagnosed primary liver - HCC (no chirhosis, no hepa) March 2010. God bless everyone dealing with this aggresive cancer!
  • Zp
    Zp Member Posts: 1
    edited July 2016 #9
    slg said:

    Nexavar
    Hi Emirl,
    My husband has been on Nexavar (sorafenib) since January 2010 and he is doing quite good. His AFP level was 476 in January and is now below the normal range. He is 2nd stage of liver cancer with Hep C and Cirrhosis. He had numerous tumors in January had a procedure called TACE in January and again in March. In the last CT Scan it showed that there are no new tumors and the ones that were once there are not seen!!!
    I would suggest reading up more on Nexavar and possible called them and getting more information direct from them. They have great nurses who can answer a lot of your questions. Keep in touch.
    SLG

    Nexavar

    hi I read your post here about your father and my mum also had TAE , is on sorafenib for three months now. Her afp is completely normal now and they are seeing shrinkage of narcotic area of tumor. i pray this stable condition and phase continues, am wondering how long your father remained stable on sorafenib? 

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