CancerCompass message board discussion started by sonnie on 3/18/2008 http://www.cancercompass.com/message-board/message/all,22118,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad had the Whipple last June and his CT shows several new nodules and masses in lungs. He just had pneumonia and 1 liter of fluid drained from pleural effusion found in left lung. My question is about how to rid his lungs of the spots to reduce tumor activity( his CA 19-9 is now 3000 plus up from  380 last reading!) CyberKinfe doctors informed me that he isn't a candidate for CK but possibly for radiosurgery. Is anyone familiar with stereotactic radiosurgery for lung mets? My dad so poorly tolerates the systemic delivery of chemoradiation he can't tolerate it again. Any comments would be so appreciated. Thanks in advance for any input.   sonnie Tue, 18 Mar 2008 00:00:00 GMT  On 3/18/2008 sonnie wrote:My dad had the Whipple last June and his CT shows several new nodules and masses in lungs. He just had pneumonia and 1 liter of fluid drained from pleural effusion found in left lung. My question is about how to rid his lungs of the spots to reduce tumor activity( his CA 19-9 is now 3000 plus up from  380 last reading!) CyberKinfe doctors informed me that he isn't a candidate for CK but possibly for radiosurgery. Is anyone familiar with stereotactic radiosurgery for lung mets? My dad so poorly tolerates the systemic delivery of chemoradiation he can't tolerate it again. Any comments would be so appreciated. Thanks in advance for any input.  SonniWe don't have experience with the lung issue but I do have a suggestion.I think through the Cancer Treatmetn Center web site I found the web site for Pancan(Pancreatic Cancer Action Network). We contacted them immedietly and now have a leason(contact person) who gave us some good information and gave us names of cancer survivors,some with similar experiences,some not so much the same, but all pancreatic cancer.My husband has talked to one who is now 7 yrs past cancer. We now are on the list to be called,part of a support group. I'm sure there would be many with lung experiences.It's scarry,don't give up hopeJan hiswayc Thu, 20 Mar 2008 00:00:00 GMT I have just posted a message a second ago to another enquiry, with the recommendation of Dr Axel Rolle in Germany.He pioneered the development of a special laser surgery option, which is the best in the world for treating multiple lung mets. This is because it cuts and seals behind it, meaning the minimal amount of lung tissue is affected, and multiple mets can be removed from the lungs, with very little scarring.In Europe, this treatment is relatively well known about and well regarded. However in the USA it is not known about. It is expected to get FDA approval in the USA at the end of this year or beginning of next year, after almost 7 years in the processing.However this treatment is available in many hospitals in Germany, and in Vienna and Italy, amongst other places. The best place to get it is at Coswig Hospital by Dr Axel Rolle who designed the laser frequency and has performed numouerous operations.In my own father's case, he had a pleomorphic rhabdomyosarcoma in the thigh, which was removed with good margins and 10 months of chemo. However 3 months after stopping the chemo, the cancer was back as mets in his lungs.There were very few options for chemo or surgery, give the number of mets and that my father's white cell counts had plummeted on the chemo. Plus the resistance of his cancer to chemotherapy. (Although now Yondelis is showing some promise for treating sarcomas, which is a sea sponge drug under trial).However with the lung surgery, he had a total of 20 mets removed from his lungs, and his lungs are now clear of cancer. There is a chance that a few more may pop up later down the track, but we will face that bridge if it happens and there is the option for more surgery or chemo then.While we were there, we met with other International patients some of whom had hundreds of mets removed (That's right - hundreds!)  a few years earlier, and were back to have a few more cleaned up 3 years on.However you would probably need to pay or fundraise for the surgery out of your own pocket as it is not covered by American insurance, and the cost of surgeries in Germany is a flat rate set by the government, which costs around 11,000 Euro per lung. I feel enormously frustrated that doctors in the USA don't know about the surgery, and are pushing chemo to patients who would really benefit from it. We were lucky to have a very independent minded oncologist who was open-minded to read all the journal articles and consider it, going on to give us his full support.       Loving_daughter Fri, 13 Jun 2008 00:00:00 GMT