Primary liver cancer and Nexavar

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  • mgp
    mgp Member Posts: 4

    HCC
    My husband was diagnosed with HCC in January. He had radiofrequency ablation on Jan. 22 for one 3cm tumor on his right lobe. His six week postop MRI showed multiple lesions had popped up on both lobes. No chance of transplant now. They are going to do a sirspheres treatment next Wed. and he will start on Nexavar on the 24 of May. Anyone out there with any information on the treatment or life expectancy after treatment would be appreciated.
    We go to the Medical College of Virginia for his treatment. The doctors tell us very little unless we ask specific questions. My husband signed up to be in a clinical trial, and sometimes I feel as if he is just a lab rat.

    wishing you both well
    My husband was also diagnosed with HCC in February. He started a trial infusion called MClone 12 with Nexavar. The infusions are easier than the Nexavar. That has really made a very active guy always tired. He had to stop working. So far only had one CT scan, and that showed no growth of the tumors, and some shrinkage. Tonight the tiredness is really wearing on his spirits, and we are on a rollercoaster. Best of luck to both of you.
  • Mako181
    Mako181 Member Posts: 13

    Nexaver
    My son is on Nexaver. We are praying (does that help...we hope so) and need to hear from someone on N that has surviverd and aside from Nexaver...what is he/she doing to stay alive and well?

    2 years and counting
    In June 2008 I was given 7 to 30 days at most to live after being diagnosed with stage 4 Liver Cancer. The AFP was around 37,000 and was retested because that number was off the charts. It came back in three weeks with 55,000, things were going down hill fast. They sent me home to get everything in order and spend time with my family. They did order Nexavar and said that I might not be alive when I get it, but I did by taking a nutritional shake and a lot of prayer. Today my AFP is around 150 and the cancer is not growing. I have had little or no side effects from the Nexavar and still take the max dose twice a day, alone with three shakes. I'm was due to get my six month CT scan in May but was pushed back to end of July so the doctor could see the sickest first. For the first time in my life I was glad to be at the end of the line.
  • SarahD
    SarahD Member Posts: 139
    Mako181 said:

    2 years and counting
    In June 2008 I was given 7 to 30 days at most to live after being diagnosed with stage 4 Liver Cancer. The AFP was around 37,000 and was retested because that number was off the charts. It came back in three weeks with 55,000, things were going down hill fast. They sent me home to get everything in order and spend time with my family. They did order Nexavar and said that I might not be alive when I get it, but I did by taking a nutritional shake and a lot of prayer. Today my AFP is around 150 and the cancer is not growing. I have had little or no side effects from the Nexavar and still take the max dose twice a day, alone with three shakes. I'm was due to get my six month CT scan in May but was pushed back to end of July so the doctor could see the sickest first. For the first time in my life I was glad to be at the end of the line.

    WOW! I feel like I am not
    WOW! I feel like I am not alone! I cant believe how many people's dad were diagnosed with HCC! My dad was recently diagnosed with HCC ia march 2010. He underwent a hepatic vein embolization in april and a liver resection may 21,2101. They removed the 13 cm tumor along with 70% of his liver with good margins. I still cant sleep very well at night and my dad has lost 30lbs from stress and decreased appetite. We havent followed up with the oncologist yet but i wonder if he will start dad on nexevar, there is no trace of the cancer anywhere else in his body. He is only 54 and I am 25, getting married in the fall and really want him around to meet his grandkids! I just cant believe this can really happen, perfectly fine one month, the next not sure how much longer you have! I love him so much and we are so afraid, he has never been sick a day in his life!! Im praying for all of you :)
  • slg
    slg Member Posts: 200
    SarahD said:

    WOW! I feel like I am not
    WOW! I feel like I am not alone! I cant believe how many people's dad were diagnosed with HCC! My dad was recently diagnosed with HCC ia march 2010. He underwent a hepatic vein embolization in april and a liver resection may 21,2101. They removed the 13 cm tumor along with 70% of his liver with good margins. I still cant sleep very well at night and my dad has lost 30lbs from stress and decreased appetite. We havent followed up with the oncologist yet but i wonder if he will start dad on nexevar, there is no trace of the cancer anywhere else in his body. He is only 54 and I am 25, getting married in the fall and really want him around to meet his grandkids! I just cant believe this can really happen, perfectly fine one month, the next not sure how much longer you have! I love him so much and we are so afraid, he has never been sick a day in his life!! Im praying for all of you :)

    MGP, Mako181 and SarahD and anyone else interested in Nexavar
    Please see the comment posted by itself regarding Nexavar and TACE for my comments and results from both.... Hope you find it encouraging.
    slg
  • offutt9
    offutt9 Member Posts: 88
    liver cancer

    I have angiosarcoma of the liver...Lesions in the blood vessels of my liver...They gave me 3 months at most to live in 2003. I have had several RFA's done,(you can read about me at offutt9) I am still living and playing with my grandkids.I go fiswhing and am able to do anything I want. The RFA (radio frequency ablation) is an overnight stay in the hospital..I just wanted to let you what worked for me. But I give ALL THE GLORY TO GOD!!!!!
  • offutt9
    offutt9 Member Posts: 88
    liver cancer

    I have angiosarcoma of the liver...Lesions in the blood vessels of my liver...They gave me 3 months at most to live in 2003. I have had several RFA's done,(you can read about me at offutt9) I am still living and playing with my grandkids.I go fiswhing and am able to do anything I want. The RFA (radio frequency ablation) is an overnight stay in the hospital..I just wanted to let you what worked for me. But I give ALL THE GLORY TO GOD!!!!!
  • mgp
    mgp Member Posts: 4
    SarahD said:

    WOW! I feel like I am not
    WOW! I feel like I am not alone! I cant believe how many people's dad were diagnosed with HCC! My dad was recently diagnosed with HCC ia march 2010. He underwent a hepatic vein embolization in april and a liver resection may 21,2101. They removed the 13 cm tumor along with 70% of his liver with good margins. I still cant sleep very well at night and my dad has lost 30lbs from stress and decreased appetite. We havent followed up with the oncologist yet but i wonder if he will start dad on nexevar, there is no trace of the cancer anywhere else in his body. He is only 54 and I am 25, getting married in the fall and really want him around to meet his grandkids! I just cant believe this can really happen, perfectly fine one month, the next not sure how much longer you have! I love him so much and we are so afraid, he has never been sick a day in his life!! Im praying for all of you :)

    pray for your dad too
    Hi Sarah, my husband was diagnosised in feb, but is unable to have surgery. it is soooo shocking. and my daughter will be married next fall too. sounds like your dad is in good hands. weight loss is very commmon, your dad may try the nexavar chemo pills too. they are strong medication but it might help.
    prayers and good wishes to your family.
  • floydr1
    floydr1 Member Posts: 1
    offutt9 said:

    liver cancer

    I have angiosarcoma of the liver...Lesions in the blood vessels of my liver...They gave me 3 months at most to live in 2003. I have had several RFA's done,(you can read about me at offutt9) I am still living and playing with my grandkids.I go fiswhing and am able to do anything I want. The RFA (radio frequency ablation) is an overnight stay in the hospital..I just wanted to let you what worked for me. But I give ALL THE GLORY TO GOD!!!!!

    liver cancer
    Hi there!

    My father was diagnosed with liver cancer this year in February of 2010. We live in Cincinnati OH and have seen many doctors who say that cannot do a whole lot for us in terms of therapeautic treatments. We have had 3 chemoembolizations, and now they are wanting to do Thera Sphere radiation. I am making an appt today at the Cleveland Clinic and I'm wondering who your doctor was? I would love to get a second opinion.

    Thank you so much and God bless!
  • offutt9
    offutt9 Member Posts: 88
    floydr1 said:

    liver cancer
    Hi there!

    My father was diagnosed with liver cancer this year in February of 2010. We live in Cincinnati OH and have seen many doctors who say that cannot do a whole lot for us in terms of therapeautic treatments. We have had 3 chemoembolizations, and now they are wanting to do Thera Sphere radiation. I am making an appt today at the Cleveland Clinic and I'm wondering who your doctor was? I would love to get a second opinion.

    Thank you so much and God bless!

    my doctor
    I saw Dr. Allan Sipperstein. He is a general surgeon. However after picking out Dr. Sipperstein to be my doctor, I had to make an appointment with Dr. R. Pelly and he referred me to Dr. Sipperstein.. Great Doctors...Great, and Caring Place to be,
  • unknown said:

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    This comment has been removed by the Moderator
  • gdpawel
    gdpawel Member Posts: 523 Member
    offutt9 said:

    liver cancer

    I have angiosarcoma of the liver...Lesions in the blood vessels of my liver...They gave me 3 months at most to live in 2003. I have had several RFA's done,(you can read about me at offutt9) I am still living and playing with my grandkids.I go fiswhing and am able to do anything I want. The RFA (radio frequency ablation) is an overnight stay in the hospital..I just wanted to let you what worked for me. But I give ALL THE GLORY TO GOD!!!!!

    Antitumor and Antimicrovascular Effects of Nexavar
    http://cancerfocus.org/forum/showthread.php?t=3141
  • jeffaloujiro
    jeffaloujiro Member Posts: 1
    Diagnosed wiith Stage 4 HCC in Manila, Phil
    My husband was recently diagnosed with HCC stage 4 with bone met. Right now he's undergoing Cobalt RT for his spine as the caner spread on two points of his spine.He was given months to live and Nexavar was the treatment the oncologist said however she said the result will be minimal if he is already at child's pugh b. We live in Manila Phil and getting nexavar is sky high expensive, with our currency it will cost us close to 1 million pesos. But we're looking for means as GOd is good. It's good to hear that there are a lot who can share there inspiring stories.
  • So afraid for my brother
    So afraid for my brother Member Posts: 1
    edited April 2017 #34
    Mako181 said:

    2 years and counting
    In June 2008 I was given 7 to 30 days at most to live after being diagnosed with stage 4 Liver Cancer. The AFP was around 37,000 and was retested because that number was off the charts. It came back in three weeks with 55,000, things were going down hill fast. They sent me home to get everything in order and spend time with my family. They did order Nexavar and said that I might not be alive when I get it, but I did by taking a nutritional shake and a lot of prayer. Today my AFP is around 150 and the cancer is not growing. I have had little or no side effects from the Nexavar and still take the max dose twice a day, alone with three shakes. I'm was due to get my six month CT scan in May but was pushed back to end of July so the doctor could see the sickest first. For the first time in my life I was glad to be at the end of the line.

    Nexavar

    So wonder to hear your story. My brother has been on Nexavar for a couple of months. He is taking the strongest dose. He is having trouble finding something he can eat that is nutritious and taste good to him. He seems to be able to tolerate Carnation instant breakfast. I was wondering what the shake is that you were taking while you were using the Nexavar. 

     

    Hope all is going well for you

    Best Regards Diana