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I don't know if I am doing this right but I thought I would stop reading and at least jump in. I am 49 years old with an 18 year old daughter. My ex-husband died last Dec. from an aggressive form of brain cancer. I was diagnosed as having throat cancer in approx. Sept. 2001 and ended up having emergency surgery and being placed in a medically induced coma due to aspiration pneumonia. Needless to say, I lost my voice box and they had to remove 21 lymph nodes, 8 of which were cancerous. Luckily I had and still do have wonderful doctors, experimental nurses, and technicians locally and at the University of Chicago Research Center. I underwent 6 weeks of radiation and two cycles of cisplatin. In Sept. 2002 they were going to declare me cancer free but I insisted on one more x-ray which came back as showing something in my lungs and the PET scan apparently lit up too (which could have been also from the radiation). I started Iressa in Dec. 2002 but it did not work and may have made things worse. I then started on oral drugs with PTK (experimental blood vessel inhibitor) and Xeloda (usually used to treat breast cancer). 50% shrinkage right off the bat. Unfortunately, after 5 months the three tumors began to grow a little again and the doctors took me off of the medicine. I wish I could have kept taking the Xeloda. Few side effects and the tumors actually shrank again once I was off of the high dosage. I know that the PTK was a scary phase I drug but I loved the Xeloda. It works well for women but not men for some reason. I just feel if they could have reduced the dosage I would have done ok. Stupid FDA regulations. I am now doing Thalidomide and CPT-11. The Thalidomide has also been found to reduce blood vessel growth and has been used as cures for other diseases. Not too bad so far. I have always been pretty healthy with doing all of the excercising and vitamins and such. I haven't lost my hair yet, but it might happen this time. I have to keep telling myself that that is a small price to pay. I never ask about life expectancy since they say I shouldn't be alive now as it is. I have to take care of my daughter and work to try to pay for stuff. The bills keep mounting even with the experimental stuff. I have great experimental nurses that I can e-mail anytime with questions or if I am freaking out. I use an indwelling voice prosthesis so I can talk almost normally. If it wasn't for my daughter I don't know how much more of all of this I could take. I am also trying to get lined up for radiofrequency ablation which is not going that well so far. There are just not that many centers that do that, but Duke University sent me a list and I have the paperwork I need for my doctor to fill out. My tumors are around 1 cm. but I am scared to talk about it because they might grow ( I am totally superstitious). The other problem with that is once you have a procedure like that done it may preclude you from further experimental drugs and the Univ. usually gets all of the drugs available. They also want me to have chemo along with the rfa. They don't want to do surgery or radiation because the tumors are in both lungs (my luck) and they are all in different locations. They don't want to remove one without taking all of them even though physically I would prefer it. I have had 8 surgeries on just my esophagus due to radiation scarring and it was a piece of cake. I prefer surgery to chemo any day. Oh well. Great web site with good information. Thanks.

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Welcome... You will find the people here very helpful and caring. Sorry we have to all meet this way. But at least we have the support and experiences of others that are going through the same thing. Stay positive and keep up the good fight, you are a survivor... Please keep us posted.

God Bless


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