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Re: Re: Re: News
Submitted by susie on 07/Jun/2007 in reply to Re: Re: News posted by Jenna on 07/Jun/2007
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Jenna: The good news is that FHC is typically a "slow growing" cancer as opposed to others. There have been FHC patients that after their first sugery, have not had it return at all. In other words, it was removed in time. This disease has been considered by doctors as a surgically treated disease. There are several schools of thought that we have experienced from the oncologists. Several years ago, there were no effective chemo drugs to try--so the docs would wait and see knowing that whatever they would try had been proven not to work and had miserable side effects. They would remove tumors surgically as they appeared. Today there are newer drugs that although we don't know yet if they work, they have not yet been proven not to be effective. Even still there is a difference of opinion with oncologists. Some say wait for a tumor to appear, treat with chemo so there is a benchmark to see if the chemo is working (in other words, if the tumor remains the same or better yet shrinks, they'll know if it's working). Other oncologists are more aggresive in their thinking and would recommend trying something to try to kill the microscopic cancer cells before they have a chance to grow since the cancer was found in lymph nodes. Then the question is what drugs to try. That's where you can get info from this site--from what others have tried and the results.
My son was on Avastin for over two years. He had a tumor (lymphatic) in his chest that stayed the exact same size for that length of time before it started to grow. The side effects were minimal--he was able to live his life. After that tumor was surgically removed last August, he began taking Nexavar with the thought of adding Avastin. His side effects were rough on even a small dose (200mg/day) so the Avastin was not yet added because Avastin is known to compound the side effects of Nexavar. A small node we have been watching under his collar bone has just started to grow (it's about 1 1/2 cm). We are currently evaluating his options: sugery vs chemo. Thus 200mg/day of nexavar by itself may not be effective (1 patient is not a good sample) but paired with another drug or at a higher dose....who knows. Hopefully, others will share and please read the archives. Jenna, you are remarkably strong and I admire you for taking such an active role in your treatment! Know that you are in our prayers!! Susie
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