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Thread: HCC metastasized to lungs

  1. #1

    HCC metastasized to lungs

    My husband had HCC last year, had 60% of his liver removed, and now the liver is clear. But the HCC has metastasized to his lungs. The only treatment appears to be a drug called Nexavar that will hopefully stop or slow the growth of the tumors. Does anybody have experience with Nexavar? I'm wondering about effectiveness of the drug, side effects, length of treatment, etc.
    I'm also looking for complimentary treatments (alternative treatments) that he can do along with the Nexavar. Any ideas?

  2. #2
    Super Moderator Top User sheila's Avatar
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    like I mentioned to someone eles here dont just take that answer as the last resort-try alternatives if you already tried 2nd and third opinions-it cant hurt at this point.

  3. #3
    I've found that there are several herbs that interfere with the absorption of Nexavar (St. Johns Wort, Thistle weed, and Milkweed). We're going to try acupuncture to keep his body strong. He's taking flaxseed oil and eating foods rich in antioxidants. Any other suggestions out there? I know there are lots of people out there with miracles to sell for big bucks, but I'm avoiding those. We've gotten two opinions at the Stanford Hospital Cancer Center. I feel confident in the doctors and don't know if there's a reason to seek a third opinion outside of Stanford. They are on the cutting edge of technology and cancer treatment.

  4. #4
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    Nexavar gets a bad rap in my opinion. They say it only adds 3 months or so to your life. I don't believe this is a very useful way of viewing the effectiveness of the drug. It can be a valuable addition to your cancer treatment for a number of reasons. They're discovering new ways it can be beneficial all the time. I've been on it about a year and a half and I believe it's been a major factor in my survival so far. It does have some unpleasant side effects but they can be managed. On another point you bring up, I've read that antioxidants act at counter pruposes to chemo drugs (presumably including Nexavar). Think about it. Antioxidants act to protect cells and promote their growth, including cancer cells. This is exactly the opposite of what the chemo is trying to do, namely kill cancer cells. Finally, if you do decide to get on Nexavar, take vitamin K too. It has recently been found to promote the effects of the Nexavar. Look all this up on the internet yourself. Don't take my word for it. I'm certailnly not a doctor or anything. These are just some potential tips I've gathered in my research into this disease.
    Andy Hummel

  5. #5
    Thanks Andy. That's great information about Vitamin K. You'd think they'd tell us that kind of stuff. I know doctors aren't big on vitamins, but it's still surprising they didn't mention it considering the amount of research I found on the internet supporting the use of vitamins with Nexavar. I also see that Vitamin B6 can help prevent or reduce the hand/foot syndrome side effect. So we'll try that too. The pharmacy "lost" my husband's Nexavar prescription last week. Our patience is running out. I expected better service from a company that charges $6000 per month for the drug. We're hoping to receive the meds Wed. You're a longtime Nexavar user so any other information or personal experience is sure appreciated. Thank you
    Corky Lazzarino

  6. #6

    Nexavar for HCC metastasized to lungs

    As a follow up...
    My husband started Nexavar, tapering up to a full 800 mg dose over 3 weeks time. One of my biggest fears was the hand-foot reaction. He takes vitamin B-6 for that and apparently it's helping. He has some peeling on his feet, but no tingling, or pain. Other side effects are loss of energy (big time), some intestinal discomfort, pain in his knees and shins which moved up into his hips, and just generally feeling lousy. But it's day to day. Some days are actually fairly good, but his stamina is still pretty low.
    I'm encouraged that he's not having side effects as bad as I feared. He has some bad days, but also good days.
    I'm also making him do the Budwig Protocol (cottage cheese/flaxseed oil). Maybe that's helping, but it's hard to tell. He feels that might be a help because they told us to expect nasty side effects and they've been pretty minimal so far. (He might be saying that it's helping just to keep me happy! But whatever works is ok with me.)
    I'm still researching and using some alternative treatments including Bill Henderson's protocol. But I'm not doing the Henderson vitamins because the doc says he shouldn't have the vitamin K with his Nexavar. If they need to cut back his dose later, I've seen studies that say the vitamin K can help keep the Nexavar effective at lower doses.
    So much going on, and we're only a month into this thing.

  7. #7
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    Hi

    My dad diagnosed with HCC 2 years ago have just started on Nexavar low dosage only. Can anyone please update me on the nexavar + vitamin k combo? Have anyone experienced enhanced response due to the combo and how much Vit K to take? Thanks.

    Vincent

 
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