Sorafenib
This summer most of my stress originated from the thought that I am entering a new fase. I have been granted a chance to be treated with Sorafenib, or Nexafar. This sounds wonderful but it actually implies that we have embarked on the last resorts. I usually try to concentrate on everything that is going well. I have in some sense reached a status that can be called reasonably stable as the Thyroglobuline count is still very slowly decreasing. The decrease is so slow though that my doctor prefers to call my situation stable. That is if we are doing the maths. Looking at the past 8 months though I can only conclude that there has been more deterioration than build-up. I have a hunch that all my problems in the past 2,5 years were there to start with. I don't think that the cancer has spread to new areas. The original areas did have a chance to progress though. The Sorafenib is a drug that is used in metastased (spread) cancer. It has been applied to liver and adrenal cancer in the past.
The first tests on thyroid cancer were done in Pennsylvania. Here are the results:
Researchers from the University of Pennsylvania assigned patients (n=30) to 400 mg of oral sorafenib (Nexavar, Bayer Healthcare) twice daily for a minimum of 16 weeks.
According to the researchers, sorafenib had an overall clinical benefit rate of 77% and an overall acceptable safety profile. Twenty-three percent (95% CI, 0.10-0.42) of patients had a partial response lasting 18 to 84 weeks, and 53% (95% CI, 0.34-0.72) had stable disease lasting 14 to 89 weeks, according to the researchers.
Ninety-five percent of patients with available serial thyroglobulin levels showed a rapid response in thyroglobulin levels with a mean decrease of 70%, according to the researchers.
Last year the first Dutch trials were held. The results are pretty good with a small reservation made for the bone metastases. What a bummer, I have only bone metastases. Seeing as most of the people that took part in the tests were over 65, I am just going to convince myself that I, as usual, will be the odd one out where it will work. I am getting a call this afternoon with regards to my first meeting with Dr. Boven, an oncologist. So happy I don't have to go back to Gerritsen. Dr. Smit in Leiden will be monitoring my progress. Fear is a problem. Not so much for the horrible side effects, but the "what if" factor is rather disturbing.
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1 comment:
Oh girl i feel so much for your "what if" factor.. i know fear is problem and that it creates stress more than i could ever hope to understand. i have been so proud and impressed by your steadfastness through all these surgeries and pain. Knowing you i know that the positiveness naturally occurs in your personality has has been leading to your wondrous results and your true grit determination keeps you strong. Don't let fear take over now; you have come so far and you have beaten back fear so many times I am sure... I hate to think of you scaring yourself with your own personal thoughts. you are so young compared to those in the trials; don't let those trials tell YOU what your outcome will be; you are your own superwoman, i can not even imagine the worry you have, but you are beating the odds for a reason; and you are your own path, not anyone elses...please stay strong, keep your faith, you are on our mind always BIRTHDAY girl, we love you from America!
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