cathy Posted May 6, 2003 Share Posted May 6, 2003 Hi friends...Heres a little update.....seen dads onc last week.. He said that he didnt want to put dad on any chemo because he is so weak that it could kill him (because of the fibrosis). He has some activity on the bottom from where they did the lobectomy. I had asked him about any vaccine trials that are not as toxic as convential chemos, and of course he knew of none...I gave him a few that John had found for me and he didnt seem interested.. He said in order to be in a clinical trial you had to have a high performance level, which means be able to walk around or whatever...Well dad cant walk 3 steps without loosing his breath.... He seen that I wasnt going to stop so I think to pacify me he said, maybe we can try Iressa if dad gets stronger. I mentioned going somewhere else at least to get him breathing better, like a teaching facility. well he had no idea..Then I suggested what about U of Mich... He had no idea if they had anything there for him..With very little research I found it was rated in the top ten for respiratory disease I believe by the New York times...How come he doesnt know any of this its only about an hour from us... Anyway we went to see dads Pulm..today and here is the good knews..We are going to U of M.. I told his pulm I tried to get an appt.and it would take 2 months without a dr. referal...He is getting right on it and hopefully will have an appt. within 2 weeks...I will let you know what happens there...sorry so long.....cathy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 6, 2003 Share Posted May 6, 2003 Cathy I have always had good luck with my oncologist and am sorry you are not. But it does sound like your pulmonoligist will help. I feel so badly for your dad and I certainly understand what he is going through. I hope his stamina improves soon. Good Luck and God Bless Quote Link to comment Share on other sites More sharing options...
Cary Posted May 6, 2003 Share Posted May 6, 2003 Wow you are quite lucky to be located so close. Do a search for Dr. George J. Brewer or Tetrathiomolybdate. Dr. Brewer from the University of Michigan was creator of this Drug. Maybe your father would qualify for a trial, or they can recommend a doctor who would prescribe it for you as was my fathers case. Best of Luck, Cary Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 6, 2003 Share Posted May 6, 2003 I so agree! Doctors can't be expected to stay up on EVERYTHING...but they sure the heck could be willing to research what you have found, or to research if you ask specifically. Medicine has definitely changed in the past 20 years. Doctors seem to only want to do things one way and one way only. I wonder if it has something to do with the insurance companies? It's frustrating though to have a group of "specialists" like oncology and my personal opinion is too many of them see every patient as "dead man walking". Love and hugs, Quote Link to comment Share on other sites More sharing options...
rayroy Posted May 6, 2003 Share Posted May 6, 2003 THere is hope. Dad was told 3 weeks ago that he shouldnt get more chemo becasue it would do more harm than good. He gave me of no options but hospice. I didnt listen to him and now have an appointment with new oncologists this Thursday. You have to find new docs if they the current ones are not doing their job. Quote Link to comment Share on other sites More sharing options...
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