Hebbie Posted November 26, 2003 Share Posted November 26, 2003 This past Saturday (11/22) the Wellness Community in Philadelphia hosted a Question/Answer session with Dr. James Stephenson of the University of Pennsylvania Hospital. He's an oncologist who specializes in Lung Cancer. (He's also my doctor and I can't say enough good things about him!) About 25 people were there and we learned A LOT about the future of treatment. I hope I can remember it all for you! (Ginny attended this session as well and I hope she can help me to recall some of the info!) He said that there are SEVERAL new drugs coming out in the early part of 2004. He also said that in the last 2 years and in the next year to come there will be more new treatments approved for LC than there have been approved in the last 20 YEARS. Awareness has slowly been increasing and funding is moving in the right direction. It's becoming more of a priority. He also talked about vaccines -- how they seem to be the direction that treatment is headed. Making a vaccine out of some of your own tumor, mixing it with some stuff and then injecting you with it to stimulate your immune system to fight it. More of a "personalized" treatment. He also said that Dr. Sternman (my pulminologist from Penn) is working on a vaccine trial for lung tumors where they inject you with some sort of vaccine and then put a broncoscope down there and when light in shone on the tumor cells, it causes them to die. The vaccine is actually "light activated". Also -- another one of Dr. Stephenson's patients was there -- he was diagnosed Stage IIIB. He knew of a company out in California (don't know the name, but I could probably find out) that will do an analysis of your tumor. Dr. Stephenson had never heard of this approach but his patient pushed very hard to have it done and his insurance was willing to cover the cost so they did it. They got a sample of his tumor via a biopsy and sent it off for analysis. (2 week turnaround time) They tested his tumor against various chemo treatments -- it is very good at ruling out what will NOT be affective against it. They sent him back a list of drugs that his tumor was resistent to and suggested a chemo regiment they thought would be most effective. It was a cocktail of 5 different drugs, including Irissa. Dr. Stephenson agreed to use the suggested treatment. It worked. His tumors are gone. He is currently NED. Based on his success with this approach, they are talking about publishing the case study and the doctor is going to do more research into the approach. There is so much more but I am having trouble remembering it all! Toooo much information!!!!! My head was on overload! I hope this gives everyone the same hope it has given me! Have a wonderful Thanksgiving Day! Heather Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 26, 2003 Share Posted November 26, 2003 Heather, Maybe your doctor (the presenter) could copy his notes for you???? Thanks for the big dose of HOPE, Becky Quote Link to comment Share on other sites More sharing options...
Hebbie Posted November 26, 2003 Author Share Posted November 26, 2003 That's the problem! He didn't HAVE any notes!! We just all fired questions at him and he answered each one! Quote Link to comment Share on other sites More sharing options...
Cary Posted November 26, 2003 Share Posted November 26, 2003 The chemo assay is done by Dr. Nagourney, link below. I know a lot people who have used his service and have heard nothing but praise. Cary http://www.rational-t.com Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 26, 2003 Share Posted November 26, 2003 Heather, Maybe he taped it. Some of my doctors do a dictation right after appointments while everything is fresh in their mind and they don't confuse patients....maybe the doctor thought there would be some interaction and TAPED the whole thing for future reflection... Just a thought, Becky Quote Link to comment Share on other sites More sharing options...
RAY A Posted November 26, 2003 Share Posted November 26, 2003 thanks Quote Link to comment Share on other sites More sharing options...
Tiny Posted November 26, 2003 Share Posted November 26, 2003 Hebbie- Thanks for attending the conference and for sharing your information...it was a little candle to help light up my day. It's wonderful to hear some encouragment and helps with the "hang-in-there" attitude. Quote Link to comment Share on other sites More sharing options...
Nancy O. Posted November 28, 2003 Share Posted November 28, 2003 Thanks Heather. It is a ray of hope and we can never have too many of those. Nancy Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 28, 2003 Share Posted November 28, 2003 I, too, walked away feeling more optimistic than when I got there. A couple of things: 1. There were quite a few 5, 6 and 7 year survivors, including one woman who is a 7.5 year SCLC survivor. 2. Sounds like at least 2-3 new drugs about to hit the market. 3. The Dr. said that the statistics are not reliable, but that if you look at the mortality chart it is going down for both sexes. 4. While he said, he is not sure about a cure for LC, he thinks we are moving closer to it being treated like a chronic disease. I was particularly impressed with the guy that had his tumor tested as Heather wrote. I don't know why that isn't done immediately. Seems like it would be cost effective, eliminating all the drugs that are not going to work. And, by the way, Heather is a cute, or maybe cuter in person then her picture. Ginny Quote Link to comment Share on other sites More sharing options...
berisa Posted November 29, 2003 Share Posted November 29, 2003 Thank you Hebbie and Ginny, thanks. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted November 29, 2003 Share Posted November 29, 2003 Chronic illness sounds good to me!!! Sounds like there are some interesting things coming down the pike. Maybe they will be the magic bullit we all are looking for! Thanks for that little ray of sunshine! God Bless, MO Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 29, 2003 Share Posted November 29, 2003 Thanks Ginny and Heater for attending and sharing a ray of hope with us. Quote Link to comment Share on other sites More sharing options...
SandyS Posted November 30, 2003 Share Posted November 30, 2003 WOW. I LOVE the "testing the tumor" concept! That should be used for everyone! It would spare them the side effects of drugs that aren't going to work on them, get them immediately going on the ones that will and save a lot of money too! Awesome - I hope they plan on more of that in the future! Thanks for filling us in, SandyS Quote Link to comment Share on other sites More sharing options...
karen335 Posted November 30, 2003 Share Posted November 30, 2003 Heather and Ginny, Thank you very much for all the information. It sure brightens our day. It gives us hope for the very near future. Praying for a "Cure" or control of a "Chronic Disease"... This is awsome................... God's Blessing to all Karen Quote Link to comment Share on other sites More sharing options...
bobmc Posted November 30, 2003 Share Posted November 30, 2003 THANKS Heather; Very informative, I also like the idea of testing the tumor, I heard of that also being done in Boston. thanks again God bless Bobmc- NSCLC- stageIIB- left pneumonectomy 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Marie Posted December 2, 2003 Share Posted December 2, 2003 Thanks Heather and Ginny. Wish I could have been there. Quote Link to comment Share on other sites More sharing options...
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