caroline Posted February 23, 2003 Share Posted February 23, 2003 Hi. I'm new to the group here. My dad is a non-smoker who was dx'd with nsclc IIIB 5 years ago and has done quite well with chemo. The traditional therapies have kept him going this long but unfortunately they have run out of options...he has apparently used all of the chemo drugs meant for lung cancer. They are now haphazardly trying drugs meant for other cancers hoping they might work...meanwhile his lungs are filling up with fluid...they removed 2 1/2 quarts about a week ago...does that seem like a lot? It does to me. He lives in Alaska and had been coming to Seattle (and staying with me) for much of his care...so I knew he was in good hands. Now he's down in Arizona being a snow bird...and seeing a doctor who may be just fine but hasn't been subject to my scrutiny... so naturally I worry whether this doctor is his best option in Tucson. My dad is one of those guys who think this whole cancer treatment thing is such a crapshoot that it doesn't matter too much who the doctor is! Of course he may be right but I'm in the healthcare field myself so naturally I disagree. But part of my worry is that he has gone downhill really fast...he's on O2 and down in the dumps! I'm at that stage where I'm wondering if there's anything I can do and when it's time to head down there to be with him. I work and have a husband and 8 month old baby so unfortunately I can't just go down there at the drop of a hat and stay indefinitely. Any thoughts , suggestions or just words of support would be greatly appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Marlon Posted February 23, 2003 Share Posted February 23, 2003 Hi Caroline, While I know it hasn't been easy on you or your dad, I hope my mom reaches the 5-year mark. In July 2002 my mom was staged at IIIB/IV NSCLC because of the pleural effusion(fluid around the lung). No tumors could be found. It's not a bad thing that they are trying other chemo drugs for your dad. There is this test called a chemosensitivity test, where they take a sample of your fluid, tumor, etc., and test all the 80 chemo drugs and combinations on it to see what will work. It is a novel approach which determines the exact amount a patient needs so that chemo isn't too toxic for them. My mom's oncologist says insurance usually will reimburse as long as you can document that all the standard drugs for lung cancer are no longer working. We were all set to do it this January, but then my mom's fluid and her CT an PET scans came back clean, so we may not need to. Here is the link and some testimonials: www.rational-t.com http://www.bath.ac.uk/med-sci/bcr/medicarehearing.htm http://www.a1webs.com/virtualtrials/doug/assay.cfm http://www.cedtechhealth.com/drnagourney.htm http://www.tmgservices.com/bjuice.htm http://www.lef.org/magazine/mag99/dec99-interview.html http://henrydreher.com/pages/cg-rc-case.html http://www.medonc.com/unknown.htm http://www.cmbm.org/conferences/ccc99/t ... 9/su8.html Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 23, 2003 Share Posted February 23, 2003 Hi, Caroline. Sorry your dad has this uncertainty period. I know that is tough on you. You have my support here. Yes, I would love to have those 5 years for my wife, as we are just embarking on this journey since October. Has your dad been to one of the major cancer centers in the country to see what other alternatives there might be? Take care of yourself and my prayers are with you all. Don Quote Link to comment Share on other sites More sharing options...
Debaroo Posted February 24, 2003 Share Posted February 24, 2003 Caroline, it's great that the chemo worked so well for so long for your dad. Have you ever tried to get him into an IRESSA clinical trial? It isn't guaranteed to work (but what IS?) but when it does, it's pretty amazing. Maybe you could contact your dads onc. and ask about it? Take care, Deb Quote Link to comment Share on other sites More sharing options...
caroline Posted February 24, 2003 Author Share Posted February 24, 2003 Hi...thanks so much for your feedback...it's so nice to have some interaction with people who are in similar situations. With response to the chemosensitivity idea...I think my dad is under the impression that he would have to have a thoracotomy to get the tissue sample and does not really want to go through that again. But I love the idea and it makes so much sense! As far as Don's question about visiting the major cancer centers...I am in the healthcare industry but I am an optometrist so I really don't know which cancer centers are considered "good"...are there any on the west coast that you know of? As far as Debaroo's question about clinical trials...yes I did neglect to mention along with traditional chemo treatments my dad has also been receiving experimental drugs at the same time...which was how I talked him in to coming to Seattle for treatment...to get into clinical trials. For those of you who are newer to this cancer thing...I think that one experimental drug in particular may have been partially responsible for the fact that he has survived so long...it was an angiogenesis inhibitor and I think he did really well on it. Unfortunately it didn't do well in clinical trials so it never went to market...however the woman in charge of his study group thinks the only reason it didn't do well is because you had to be stage IIIB to get into the trial...which may have been too late for most people to benefit from that particular kind of therapy. So what I am getting at is that if your loved one has a chance to be in an angiogenesis inhibitor clinical trial it may be something worth considering...perhaps especially if they are at an earlier stage. Anyway....thanks again for taking the time to reply to me and for all of your insight. Quote Link to comment Share on other sites More sharing options...
Tiny Posted February 24, 2003 Share Posted February 24, 2003 Dear Caroline, Just want to add my thoughts of concern and support for you and your dad. I know it has to be harder for you now that he is further away and you no longer have your finger on the pulse of things. It's hard to stay positive, but there are remarkable stories of hope on this board. Take care and keep us posted. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 24, 2003 Share Posted February 24, 2003 Caroline, unfortunately I am in Houston and don't know about cancer centers on the West Coast. A good source might be U. S. News & World Report who rate the hospitals. I think there was a listing a few months back. Sorry I can't be of more help on that. Perhaps someone on this message board from the West Coast can make suggestions. Best to you, Don Quote Link to comment Share on other sites More sharing options...
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