any one with HCC (primary) No Cirrhosis and No Hepatitis?

dvmendoza
dvmendoza Member Posts: 12
in Liver Cancer #1
My husband has this and the doctors say it is uncommon within the HCC diagnosis. If anyone else has this type, please write me and let me know what treatments you are participating in or have participated in.

One doctor says we just try Nexavar first and then consider other treatments when/if Nexavar doesn't work. Another doctor (one from a comprehensive cancer ctr) says we can either take Nexavar or go into three different trials each in different phases (1,2 and 3).

Thank you!
Dori

Comments

  • vazquez7
    vazquez7 Member Posts: 8 Member
    #2
    hcc with no cirrhosis
    Hello,

    I was dx with HCC in 2007 and I have no cirrhosis or hx of hep. I was blessed to be able to have surgery and the tumor was removed. I did no further treatment. I did go to Mexico for follow up care and to have a cancer vaccine made. Since that time, I have juiced, changed my diet, supplements, etc. I am sorry I don't have more to tell you but if I can be of help, let me know.
  • dvmendoza
    dvmendoza Member Posts: 12
    #3
    vazquez7 said:

    hcc with no cirrhosis
    Hello,

    I was dx with HCC in 2007 and I have no cirrhosis or hx of hep. I was blessed to be able to have surgery and the tumor was removed. I did no further treatment. I did go to Mexico for follow up care and to have a cancer vaccine made. Since that time, I have juiced, changed my diet, supplements, etc. I am sorry I don't have more to tell you but if I can be of help, let me know.

    please elaborate
    Hi Vazquez. My husband had one tumor removed in 2010 and they told us there was a low chance of recurrence so we did not get treatment after that. Then just a few weeks ago, he felt a mass and now the ct shows numerous tumors in his liver and one outside (on the abdomen wall). He has a started a trial combining two FDA approved targeted therapy drugs - Torisel and Nexivar.

    Can you please tell me where you went and what doctors you saw in Mexico. What follow up care did you get? What is this cancer vaccine?

    Please help me.Thank you.
    Dori
  • Darryl2010
    Darryl2010 Member Posts: 15
    #4
    dvmendoza said:

    please elaborate
    Hi Vazquez. My husband had one tumor removed in 2010 and they told us there was a low chance of recurrence so we did not get treatment after that. Then just a few weeks ago, he felt a mass and now the ct shows numerous tumors in his liver and one outside (on the abdomen wall). He has a started a trial combining two FDA approved targeted therapy drugs - Torisel and Nexivar.

    Can you please tell me where you went and what doctors you saw in Mexico. What follow up care did you get? What is this cancer vaccine?

    Please help me.Thank you.
    Dori

    HCC treatment
    Hi Dori,
    Like your husband, I have HCC without Hep C or Cirrhosis. Fortunately, I chose to go to MD Anderson in Houston, TX for treatment. They removed the single tumor I had via surgery but soon after they found several lesions that had metastisized outside of my liver. The plan was to follow surgery with CT scans every 3 months for the first year, every six months the next year and every year thereafter. I just never made it past the first quarter without cancer, so the plan never went forward. I'm suprised your team didn't plan CT scans into your husbands treatment plan to detect any recurrance.

    Anyway, after finding the new lesions, the 1st drug they tried on me was Nexavar, which is the only FDA approved drug for primary liver cancer. It didn't work for me, as the disease continued to progress while I was on Nexavar. That's something that you'll find out soon enough. No two liver cancer patients are the same, react the same to the same medicines, or get the same results from the same drugs. I'm on my fourth clinical trial, still looking for the miracle drug. My current trial delivers Irinotecan (approved for colon cancer patients) directly into my liver via Hepato Arterial Infusion (HAI) and Avastin via IV into my bloodstream. It's a pretty rugged procedure, but the fact that it is delivered right into the liver has me hopeful.

    If I can give you the one piece of advice that I believe saved my life, it's to get your husband to any one of the 4 or 5 best known cancer centers in the US. MD Anderson in Houston is one, Sloan-Kettering in NYC is another, the Cleveland Clinic is another. I chose MD Anderson because they appeared to be doing the most clinical trials for HCC of any that I looked at. The best advice that my GI doctor gave me when he told me I had HCC, was to seek treatment at one of these 4 or 5 centers. I live near Orlando, FL so it's been a chore, going to TX every month.

    I wish you and your husband get good results where ever you get treatment. Good luck

    Darryl
  • dvmendoza
    dvmendoza Member Posts: 12
    #5
    Darryl2010 said:

    HCC treatment
    Hi Dori,
    Like your husband, I have HCC without Hep C or Cirrhosis. Fortunately, I chose to go to MD Anderson in Houston, TX for treatment. They removed the single tumor I had via surgery but soon after they found several lesions that had metastisized outside of my liver. The plan was to follow surgery with CT scans every 3 months for the first year, every six months the next year and every year thereafter. I just never made it past the first quarter without cancer, so the plan never went forward. I'm suprised your team didn't plan CT scans into your husbands treatment plan to detect any recurrance.

    Anyway, after finding the new lesions, the 1st drug they tried on me was Nexavar, which is the only FDA approved drug for primary liver cancer. It didn't work for me, as the disease continued to progress while I was on Nexavar. That's something that you'll find out soon enough. No two liver cancer patients are the same, react the same to the same medicines, or get the same results from the same drugs. I'm on my fourth clinical trial, still looking for the miracle drug. My current trial delivers Irinotecan (approved for colon cancer patients) directly into my liver via Hepato Arterial Infusion (HAI) and Avastin via IV into my bloodstream. It's a pretty rugged procedure, but the fact that it is delivered right into the liver has me hopeful.

    If I can give you the one piece of advice that I believe saved my life, it's to get your husband to any one of the 4 or 5 best known cancer centers in the US. MD Anderson in Houston is one, Sloan-Kettering in NYC is another, the Cleveland Clinic is another. I chose MD Anderson because they appeared to be doing the most clinical trials for HCC of any that I looked at. The best advice that my GI doctor gave me when he told me I had HCC, was to seek treatment at one of these 4 or 5 centers. I live near Orlando, FL so it's been a chore, going to TX every month.

    I wish you and your husband get good results where ever you get treatment. Good luck

    Darryl

    Thanks Darryl! More help please...
    I called MDAnderson and because we are not insured right now, they are telling me that I have to pay about $35,000 UP FRONT just for a consultation. They don't even want to see us because David has started treatment at Robert Lurie Cancer Ctr at Northwestern Memorial in Chicago. I am looking into getting a government type of health insurance plan (IPXP) and will circle back to MDAnderson to see if they will see me with this insurance. Any advice for another out of stater? We're in Illinois.

    Also, can you tell me who your doctor is at MDAnderson? And phone number?

    With much gratitude,
    Dori
  • vazquez7
    vazquez7 Member Posts: 8 Member
    #6
    dvmendoza said:

    please elaborate
    Hi Vazquez. My husband had one tumor removed in 2010 and they told us there was a low chance of recurrence so we did not get treatment after that. Then just a few weeks ago, he felt a mass and now the ct shows numerous tumors in his liver and one outside (on the abdomen wall). He has a started a trial combining two FDA approved targeted therapy drugs - Torisel and Nexivar.

    Can you please tell me where you went and what doctors you saw in Mexico. What follow up care did you get? What is this cancer vaccine?

    Please help me.Thank you.
    Dori

    hello.
    The 10 cm tumor on
    hello.

    The 10 cm tumor on the left lobe of my liver was removed by resection. It was a grade 1 HCC. I had no treatment here in the states but chose to go to a clinic in Mexico. I chose sanoviv clinic. The only drawback was the expense. I had to borrow money to go but I felt my life was worth it. I was there for 3 weeks and got IV vitamins every single day and saw a doc every day. They removed liver cells laporoscopically to make the vaccine. The vaccine was taken under the tongue and I took it initially for 6 mos and then an additional 6 mos. Sanoviv is a non toxic place. You dont even take your own clothing as they provide it. it was a good thing for me to do. I was just discharged from the oncologist and told to follow up with my regular doc for a yearly blood test for the next 2 years. I had the surgery in 2007. If you have any other questions, don't hesitate to ask.
  • MrsTigger
    MrsTigger Member Posts: 14
    #7
    dvmendoza said:

    Thanks Darryl! More help please...
    I called MDAnderson and because we are not insured right now, they are telling me that I have to pay about $35,000 UP FRONT just for a consultation. They don't even want to see us because David has started treatment at Robert Lurie Cancer Ctr at Northwestern Memorial in Chicago. I am looking into getting a government type of health insurance plan (IPXP) and will circle back to MDAnderson to see if they will see me with this insurance. Any advice for another out of stater? We're in Illinois.

    Also, can you tell me who your doctor is at MDAnderson? And phone number?

    With much gratitude,
    Dori

    My dad has hcc and doesnt have the other stuff
    Hey Doria my dad was told last march in 2011 he has hcc and has tumors on his spine. He has been on and off nexavar since about April or May of last year. I live in SC. I'm not to sure about the med. myself he has gotten weaker and not eattin much now. Sorry I am new to all this myself. I am trying to figure out more about the meds and if anyone could tell me what I could do to help my dad. I am trying to be strong for both of my parents and be there to help them out. Any suggestions?
    Mrs.Tigger
  • MrsTigger
    MrsTigger Member Posts: 14
    #8
    dvmendoza said:

    Thanks Darryl! More help please...
    I called MDAnderson and because we are not insured right now, they are telling me that I have to pay about $35,000 UP FRONT just for a consultation. They don't even want to see us because David has started treatment at Robert Lurie Cancer Ctr at Northwestern Memorial in Chicago. I am looking into getting a government type of health insurance plan (IPXP) and will circle back to MDAnderson to see if they will see me with this insurance. Any advice for another out of stater? We're in Illinois.

    Also, can you tell me who your doctor is at MDAnderson? And phone number?

    With much gratitude,
    Dori

    My dad has hcc and doesnt have the other stuff
    Hey Doria my dad was told last march in 2011 he has hcc and has tumors on his spine. He has been on and off nexavar since about April or May of last year. I live in SC. I'm not to sure about the med. myself he has gotten weaker and not eattin much now. Sorry I am new to all this myself. I am trying to figure out more about the meds and if anyone could tell me what I could do to help my dad. I am trying to be strong for both of my parents and be there to help them out. Any suggestions?
    Mrs.Tigger

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