dadawg001 Posted March 16, 2007 Share Posted March 16, 2007 Hello all, New to this forum. Dad has LS-SCLC and has been hospitalized since 10/02/2006 and has not been able to complete chemo/radiotherapy due to a number of co-morbidities. He is Anti-Hu antibody positive, and likely has this paraneoplastic limbic encephaltis. Seem like a very rare disoder from mostly SCLC patients (I think that I read somewhere that like only .4% of SCLC will get PLE). Very hard to find anything about it on Google or any studies. I have already asked Dr. West about this, and he seems to confirm that there is very little literature about this disorder. Does anyone have any experience with PLE or know any good websites with more information on PLE? Jim Quote Link to comment Share on other sites More sharing options...
lc46 Posted March 17, 2007 Share Posted March 17, 2007 Hi-I am sorry I never heard of it. If I come across anything on it I will send it over to you. Dar Quote Link to comment Share on other sites More sharing options...
pammie Posted March 18, 2007 Share Posted March 18, 2007 What a complicated aditional problem to have to deal with. Keeping you and family in prayers. pammie Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 19, 2007 Share Posted March 19, 2007 Jim, I pm'd you a weblink and info to a clinical trial at Rockefeller University, where they are treating this disorder(s) by immunosuppression using tacrilomis. I THINK it reads that there should be no additional cancer locations, other than dermal melanoma. They are also building a sample bank for research use as is another Clnical trial. I hope this at least gives you the name of a doctor at RU that the oncologist could call for more information. Glad you found us, MaryAnn Quote Link to comment Share on other sites More sharing options...
dadawg001 Posted March 21, 2007 Author Share Posted March 21, 2007 Thanks for the replies everyone. Dad's cancer has become active again. His largest tumor has grown over 45% in the past 9 days per CT scans. That is just an explosive amount of growth. SVC syndrome is back and is completely closing right lung down and also his Superior Vena Cava as well. Dad's performance status to poor to try any further treatments. Dad has days to weeks to live and will be in hospice beginning either today or tomorrow. Dad will end up dying with limited stage SCLC just 5+ months after diagnosis due to SVC syndrome. God Bless you all and keep up the fight against this horrible disease. I have witnessed it first hand almost everyday usually 2 times a day for the past 10 months. It has been tremendously difficult for me to witness a parent go through all of this. I personally may need some help after going through all of this with Dad, so if anyone has any suggestions for that, it would be greatly appreciated. Thank you all for your prayers and thoughts. Jim Quote Link to comment Share on other sites More sharing options...
mitzu Posted March 24, 2007 Share Posted March 24, 2007 Jim, I know exactly how you feel. I went through this myself, just a little over a year ago. It is indeed very hard to watch your parent waste away and die from this cruel disease. The image of him being so sick and dying will haunt me forever. He was only 63. The only consolation I have is the memory of the wonderful life I had when I was growing up with him, and the amazing friendship we shared in my mature years. I pray for you and everyone who is going through such a painful time. Quote Link to comment Share on other sites More sharing options...
DrWest Posted March 26, 2007 Share Posted March 26, 2007 Jim, I just wanted to say how sorry I am to hear about that unfortunate news about your father. Both you and he have been fighting a very tough fight. I wish I could say I'm surprised, but nothing can surprise me about this terrible disease anymore. Please know that your unfailing support for him must be a tremendous help. Chemo and radiation can only do so much, and family support is a huge blessing for people facing these challenges. -Dr. West Quote Link to comment Share on other sites More sharing options...
dadawg001 Posted March 28, 2007 Author Share Posted March 28, 2007 Thanks for all of your support. This has been a rollercoaster week for me and my family. We could see the SVC syndrome coming back with some of the swelling in his left arm and his right eye looked puffy again last week. But these symptoms actually look better now that he is in hospice. Perhaps it is because they are no longer hydrating him? Who knows. Dad has been in Hospice since last Thurs, and they are keeping him heavily medicated. I guess that I thought that we would still have a week or so to talk with him and to watch some movies and talk about life for a while, but the hospice people immediately put him on a huge dose of morphine and stopped feeding him and giving him hydration. It was a unexpected, but my family trusts what these people are doing and we don't want Dad to be in pain, so I guess we will just have the memories. I have been in contact with The Rockefeller University Hospital regarding a clinical trial (investigational only) regarding PLE and associated antibodies to help understand the immune response to the SCLC in PLE patients. They have requested a vial of blood from Dad to help their study, so hopefully some good will come out of what my Dad and my family have endured for the past 10 months. Maybe someday they will learn to harness the activity of these antibodies to stimulate some sort of immune response against SCLC. http://www.rucares.org/clinicalstudies/ ... 200&cat=50 Keep up the good fight Dr. West! Jim Quote Link to comment Share on other sites More sharing options...
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