KelleyLynn

Good Morning All, I have a new question and this looked to be the "best" forum to ask it. My Uncle was recently diagnosed with rectal cancer then, due to the pathology of the tumor it was changed to extrapulmonary small cell. After 2 cycles of chemotherapy and a ct the platinum based therapy (carboplatin, etoposide)for lung cancer did not work. The oncologist put my Uncle back on eloxatin, oxaliplatin and leucovorin to treat the rectal cancer. From what the oncologist has said so far he thinks my Uncle may have two different types of cancer at the same time. All I can say is "WHAT"???? We went yesterday for a needle biopsy on his liver to give more info. Either way the prognosis is no good. I am VERY frustrated as we do not have time for what "might be" happening. Has anyone gone through this? I am losing faith in the oncologist. He seems to spend a lot of time scratching his head! eeeeeek! KelleyLynn

Thank you for your reply Judy. I have pretty much resigned myself in the past 24 hours that the odds of finding anyone with this exact disease is slim to none. I have had his pathology reports looked at by 3 different doctors. Of course the hope being that there was a mistake. grrrr. My Uncle is "hanging in there". He is not showing a lot of emotion but that has always been his way. Today he is "well" and I am thankful for that. I don't want it to come across as this has been dumped on me but in some ways it has. I was my Grandmother's primary caregiver and she was very ill the past two years. She passed in November and even though it was time, she was ready, I was not. I was too young to lose my "mom". Now this. My Uncle is my next closest living relative. And, I am not ready. I won't be ready a year from now or 10 for that matter. Selfish I know but human. Right? My Uncle got his affairs in order, will, POA, Med. POA and the like last month. My attorney met us at my home because he was sick with his 1st round of chemo. Good I guess. I tried to make it as light as possible. The whole idea that we all need to do these things and the like. He did well but, on the inside I was a MESS. I am working on a finding a support group for hm as he is not as computer friendly as myself. I just know that will be a challenge as well. I was hoping to connect him with people in a similar situation and that seems to be a high hurdle. I won't quit on him though. Thank you again for the advice. Our next appointment for labs and check-in is this Friday. Then, chemo (3rd series) starts Monday the 19th. Our immediate issue is his fatigue and anxiety. I plan to discuss this on Friday.

Ned, Thank you so much for your time and attention. I did post over at Grace. Thank you for directing me there. I know I am acting in an urgent manner but with what we have been told, this is urgent. I need to help him fight as hard and quickly as i (we) can. It is as if you can see each grain of sand as it drains through. Cancer is watching us to see how quick we can move. ugggg

Thank you everyone for the warm welcome. I suspected that my chance of finding anyone with my Uncle's particular cancer, (Extensive Stage Extrapulmonary Small Cell) was going to be at best slim. From all my research less than 2% of all lung cancer comes in this variety. What can I say, ugggg! I have read that many people here don't buy into the statistics but it is really hard to have hope when I have yet to find another soul that is living beyond the 10 month mark with this. I have consulted with many experts and not one has any positive news. The treatment used is the same for Ext. Stg. SC but only because there is no other idea. To date, people do not live long enough to study this or do clinical trials that produce any new insight. I guess I was just hoping to find someone who is going through this. Looking for some insight. What to expect and so on. Sorry to vent. Please, if anyone can help, please, do. Broken Hearted. Kelley

Hi All! I have been lurking in the shadows for a week or so. Time to introduce myself. My name is Kelley and I am the niece of a very wonderful man. Unfortunately he was diagnosed at Thanksgiving with cancer. He is 62 yrs old, healthy and never smoked. After two pathology reports he has been diagnosed with Extensive stage extrapulmonary small cell. He has a 4cm tumor in his rectum (thankfully no obstruction) in excess of 10 nodes in his liver and of course, lymph node involvement. Scan show no mets in brain and no bone involvement. He is currently on the citoplatin regimen. 3 days per week with 2 weeks off. He is tired but the anti-nausea seems to work fairly well. We have an appointment on the 16th for the blood draw and to see the doc. I have done my homework and know all the numbers and also know that some beat the statistics. Is there anyone here who is dealing with this particular beast? My Uncle and I are VERY close. He never had children of his own but did help in my upbringing a great deal. I was raised by his Mother. She went home to be with the Lord on Nov. 13, 2008. Needless to say, it feels like we have been dealt some very bad cards. I cry very often for what is happening. It almost feels like I am grieving him and my Grandmother (mom) at the same time. I would like to help him with some of the emotional aspects of going through this but I am clueless. I cannot begin to imagine what this news does to a person. He is keeping good contact with me but he seems to be isolating himself from all others. He appears to be going through depression and I am worried about him. Any do's and don't you can offer is much appreciated!