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dadawg001

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  1. 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
  2. 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
  3. 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
  4. My Dad LS-SCLC has been in the hospital since 10/02/2006 developed pneumonia after his second EP chemo round back at around Christmas time, and I think he is just getting over it now. He has been on Vancomycin almost non-stop since Oct06 because he is constantly developing infections (blood, urinary track, PICC line, lungs) The longest I can remmeber him being off an antibiotic without spiking fevers is like 3 days. Jim
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