KelleyLynn Posted January 11, 2009 Share Posted January 11, 2009 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! Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 11, 2009 Share Posted January 11, 2009 Hello Kelley and welcome to the "family" I am so very sorry about the loss of your grandmother (mom) and now the diagnosis for your Uncle. Please know that you are in my thoughts and prayers. You definitely found a wonderful spot for information and support. The members here are excellent sources of advice and will be more than happy to help in whatever ways they can Please keep posting and let us know how things are going and perhaps you could encourage your Uncle to come and read some of the posts if not join us himself? Sending you lots of hugs and prayers Christine Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 11, 2009 Share Posted January 11, 2009 Kelley, welcome onboard but am sorry for the reason for having to find us. I feel for you have to face this with your Uncle after losing your Grandmother(mom) so recently. There are many on this site who can relate to that type of situation. It never seems fair. I don't know anything about your Uncle type cancer. I sure other members will be checking in. Maybe someone will know something about it but it's not something I remember seeing discussed on the site. In the meantime, I would strong recommend you go to cancergrace.net and ask Dr West about it. He's an authority and either he or one of the other doctors there will usually respond within 24 hours. It's well worth your time. Keep up posted and try to block out the statistics. Judy in Key West Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 11, 2009 Share Posted January 11, 2009 Hi, Kelley, welcome to the group. I doubt if you'll find anyone here with much knowledge of extrapulmonary small cell carcinoma since it's a relatively rare condition and doesn't involve the lung (hence "extrapulmonary"). But I believe your main question has to do with emotional support for your uncle, and I'm sure there are members here who can help you with that. People who have been diagnosed with a life-threatening disease react in a wide variety of ways, and what helps one person may not help another. Some become visibly distraught, some accept it as one more challenge, some become angry and resolve to fight, some withdraw into themselves, etc., etc. With your uncle, I can only guess that he's open to you because you're reacting in a way that he sees as helpful, while others may dismiss his situation with "you'll be fine" or try to avoid the subject altogether. My best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted January 11, 2009 Share Posted January 11, 2009 Hi, Kelley and welcome to the board, glad you found us. Rich Quote Link to comment Share on other sites More sharing options...
KelleyLynn Posted January 12, 2009 Author Share Posted January 12, 2009 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 Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 12, 2009 Share Posted January 12, 2009 Kelley: In her response, Judy mentioned GRACE (Global Resource for Advancing Cancer Education — cancergrace.org), an exceptionally valuable resource where I spend as much time as here. GRACE covers only lung cancer at the present time, so I was not surprised that I couldn't find anything on extrapulmonary small cell there. But since, as you say, there is a lot of similarity between your uncle's condition and extensive disease small cell lung cancer (SCLC-ED), here is one article in Dr. West's "what I really do" series... http://cancergrace.org/lung/2008/09/05/wird-ed-sclc/ ...and there are a number of Q&A threads in the SCLC section of the GRACE Forums: http://cancergrace.org/forums/index.php?board=44.0 I'm sure Dr. West would do his best to answer your question even though his main areas of expertise are lung and prostate cancer, and if I see your question before he does I'll tell him by PM that Judy and I sent you. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
KelleyLynn Posted January 12, 2009 Author Share Posted January 12, 2009 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 Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 12, 2009 Share Posted January 12, 2009 Hi Kelley Lynn. I want to welcome you as well and see that you have already heard from many of the kind knowledgable people here. How awesome that your uncle has you there for him and how heartbreaking this must be for both of you. The beginning comes as such a devastating blow, but then somehow we get into fighting mode, with positive spirits and most importantly HOPE. Prayers for a successful treatment. Please keep us posted on how you and your uncle are doing. Sandra Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 12, 2009 Share Posted January 12, 2009 Kelly, My situation may not have been as dire as your uncles, but I know about trying to find someone with a case like mine. I was frantic to do it in the beginning but have pretty much resigned myself to relating to people who have similarities. It's very lonely having your cancer manifest in a manner that you can't find others that have a cancer that looks just like yours. I was so naive that I figured mine was better--no tumor--but guess it would have been better if there were. Then they could have taken it out. As is, my best guess is it travelled through the blood stream or there was a nodule that broke through the chest wall. I'm not on cancergrace.org too often now but early on it was my best bet to get info. It might be good to bounce back and forth from here to there and try to focus in on the simiarities of the specifics (liver mets, glands etc) of his cancer than trying to find someone who matches his cancer exactly. That proved to be a dead end for me. Hang in and keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
KelleyLynn Posted January 12, 2009 Author Share Posted January 12, 2009 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. Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 12, 2009 Share Posted January 12, 2009 I am very sorry to hear of your Uncle and I'm sorry for the passing of your Grandmother. I was wondering if you have checked with the ACOR BOARD? www.acor.org They have a list of cancer's on that board, but I wonder if maybe just a "ALL CANCERS" Board might be of help to you? There MIGHT be soneone who has what your Uncle has,or maybe they know of someone. I wish you all the best. Quote Link to comment Share on other sites More sharing options...
Barb73 Posted January 12, 2009 Share Posted January 12, 2009 Dear KelleyLynne, I do not have much to say on this, but you have definitely come to the right place and will receive all of the best information, and/or guidance to where there is that information. Much good luck to you, Barbara Quote Link to comment Share on other sites More sharing options...
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