bphyllis Posted February 25, 2004 Share Posted February 25, 2004 Hi, I haven't posted in a while because I have been busy working and trying to arrange for rfa on my lung tumors which has been extremely frustrating. The last clinical trial of thalidomide and cpt-11 did not work, and I am having a terrible time getting over the side effects of thalidomide while being off of it for at least a month. The insomnia, constipation, irritability, mood swings, and facial edema get better and then seem to come back for a few days not to mention the fatique. I had an initial appointment with the surgeon who would do the rfa. I have three approx. 2cm tumors in my right upper lobe, my right lower lobe, and my left lower lobe. The problem is I have 5 tiny sattelite tumors in my right lobe and 4 in my left lobe. At first he said I wasn't a candidate, but because of my good health and being just 49 with the cancer being confined to the lungs he was willing to do 3 procedures and remove the tumors with rfa if I could get a head and neck oncologist to go along with this. I had an appointment with an oncologist at the hospital, who at first was totalling against the procedure. Said it would burn holes in my lungs and/or possibly make the cancer worse, but then he decided too that I was really healthy and relatively young. However, he wanted me to do 3 rounds of carbo/taxol first to try to shrink all of the tumors for less trauma to the lungs which made sense to me and he would write to my oncologist up North to set this all up. He also wanted me to do a second line chemo for two rounds also before the rfa, but if I got sick or had problems he promised to put me in the hospital himself for the procedure. Went to see my doctors up here that are mostly experimental docs. These docs too don't like rfa and I had to go through the whole thing again. Plus, they felt that standard chemo would only have a 30% chance of shrinkage, but really didn't have another experimental drug to try plus I felt that I should try standard chemo. He said that cancer cells become resistant to chemo after a while, but the only chemo I have had was two rounds of cisplatin in 2001, 5 rounds of Xeloda, and 5 rounds of cpt-11 with good response from the Xeloda. He also told me how he saw rfa for me as only a pallitative measure as opposed to the surgeon's opinion that it could eliminate the present tumors and extend my life. I now have everything in place, but am physically and mentally exhausted along with being angry and frustrated. If they keep telling me I am dying more or less then what difference does it make if I try a cutting edge technology with what I think is a logical procedure of chemo. Any thoughts of loop holes in my reasoning would be appreciated. Quote Link to comment Share on other sites More sharing options...
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