UncleDoug Posted April 3, 2005 Share Posted April 3, 2005 On April 1st my needle biopsy came back. Diagnosis SCLC. 3cmX3cm mass in left lung. Mets to right adrenal gland 7cmX8cm. No confirmation yet on bone or brain mets. These are scary first days. I'm to meet with my Onc Doc Monday the 4th to consult on first treatment options. Anything I should be listening for? I know next to nothing as to rad and chemo first steps. Doc, I'm sure, will want to CT my head and bones - perhaps a PET. I honestly do not know what to expect. I plan to fight long and hard. One thing I did almost from day 1 is to start keeping a journal. This is somewhere I can go to talk to myself and keep a running dialogue on situations and treatment options as they come up. I think this is a good thing. Anyway, I'm glad to have friends here I can share with. Will try and post frequently. Uncle Doug in Tacoma Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted April 3, 2005 Share Posted April 3, 2005 Well, I also have SCLC and my Third year anniversary is 4/4/05. You'll go thru alot of tests, MRI, CAT scans, bone marrow sans, etd. etc. but its's a long haul, I won't deny that. It can be very hard on a person going thru all this. They may have you do chemo and radiation at the same time - that is the gold treatment for SCLC. But it is tough on you physically. No appitite, loss of weight, weakness. But you'll get thru this. Like i said before, i'm a three year survivor - you can be too. Please let us know how you're doing . Joanie Quote Link to comment Share on other sites More sharing options...
karenl Posted April 3, 2005 Share Posted April 3, 2005 Hi Uncle Doug Glad that you are getting some answers, and a plan will soon be in place. I do not know anything useful about SC, so will leave that to the experts! Just wanted to wish you well. Karen Quote Link to comment Share on other sites More sharing options...
berisa Posted April 3, 2005 Share Posted April 3, 2005 Hi Doug, sorry that we have to meet you via this website. But you have a very positive fighting spirit. Yes, initially when just diagnosed, you may be freaked out; but while you know much about what you are going to face and deal with, you will be more well-prepared when meeting doctors and oncologists. Journal is a good idea. Do more research! Internet is a great invention. Quote Link to comment Share on other sites More sharing options...
betplace Posted April 3, 2005 Share Posted April 3, 2005 Uncle Doug, Well darn it all! I'm sorry you are in this with the rest of us, but glad you were able to find our great group of survivors! I am currently fighting my way through a recurrence, but feel like I am winning this round too. I'll be praying for you and welcome to the board! Blessings Betty Quote Link to comment Share on other sites More sharing options...
Patkid Posted April 3, 2005 Share Posted April 3, 2005 Whew..........good to see you back posting. Brian and I have you firmly in our prayers and thoughts. Uncle Doug, know we care. Brat Quote Link to comment Share on other sites More sharing options...
wkephart Posted April 3, 2005 Share Posted April 3, 2005 two degrees of SCLC, limited and extensive. for limited, the treatment is usually chemo + radiation. for extensive, the treatment is usually chemo only. sounds like you might be extensive. ask your Dr. first line chemo is often a platinum drug (cisplatin or carboplatin) with either etoposide or irinotecan. cisplatin seems to be more agressive but the side effects tend to be more severe than with carboplatin. jury is out on etoposide vs. irinotecan. japanese study suggest a couple months extra survivability with the irinotecan but i've seen some posts where the irinotecan didn't seem to work. personally, i requested cispatin+irinotecan for my ESCLC. worked great for about 8 or 9 months. good reduction in tumors. some gone. pleural effusion also cleared up without having to drain. here are some websites to search for information: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi http://www.jco.org/ http://medlineplus.gov/ http://www.medscape.com/ http://www.cancer.gov/search/clinical_trials/ good luck, wray Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted April 3, 2005 Share Posted April 3, 2005 Uncle Doug, You have a good thought about journaling. Might I add either taking a friend with a list of questions, written, for your doctor or else a tape recorder. I found it terribly difficult to recall all the detail and to remember to ask all the questions. Its good to take someone with you if you can. Atleast if you know what the enemy is, you can fight it best. Good luck on your scans. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Wendy Posted April 4, 2005 Share Posted April 4, 2005 Uncle Doug, Sorry to hear about your diagnosis, but rest assured there are survivors out here living life to the fullest. You have a great attitude and the journal is a fabulous idea. Over the next few months they will throw so much information out there that you need the journal to keep up. Be good to yourself and keep us posted on your treatment plan, Wendy Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 4, 2005 Share Posted April 4, 2005 Doug, glad you have found us. Let us know how we may support you. Don Quote Link to comment Share on other sites More sharing options...
mayos Posted April 4, 2005 Share Posted April 4, 2005 Yor plan to fight "long and hard" is a welcome one on this forum. You have many brothers and sisters here. Unload whenever the mood strikes you Doug. Quote Link to comment Share on other sites More sharing options...
jcawork Posted April 4, 2005 Share Posted April 4, 2005 Dear Uncle Doug, Welcome and I am sorry why you are here, but this is the place to be if you have lung cancer. The first 6 weeks of dx was devastaing for me. Honestly, I spent most of it tanked and crying as I couldnt deal. This eased up once there was a plan. Find me if you need anything. Get a plan. Jen Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted April 4, 2005 Share Posted April 4, 2005 Uncle Doug, I wish you the best! They have very encouraging results with chemo on sclc. The lady who wrote and said she is a three year survivor is a great example of this. Best of luck to you! Sharon Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted April 4, 2005 Share Posted April 4, 2005 Uncle Doug, I'm the caregiver - wife of a now extensive SCLC survivor - do you have a spouse or partner or some sort of strong support system? I think that really helps. If not, journaling is the best idea ever. Dave and I journal just by keeping a calendar/daytimer sort of thing, and it's really important when you're at an appt. and get asked "now, when did you have that such and such procedure?". My husband had the japanese protocol - cisplatin and CPT-11 (irronecan) and it didn't work - it was for a met he had in his right frontal sinus cavity (his first met which threw him out of remission from limited into the category of extensive) - the met went away, but that was most likely from the radiation to it. He grew other mets while getting the japanese protocol. I'm not a big fan of it, I read somewhere it works great with the japanese but not so well with causcasians, so might be a genetic thing. anyway, I'd definitely try to get the chemo and radiation together, it really seems to be key, limited or extensive. You have a great attitude - keep fighting, keep strong, keep researching (to make sure your docs are staying on top of everything) and don't be afraid to be a real partner and advocate for yourself in your treatment. God Bless and good luck, Karen Quote Link to comment Share on other sites More sharing options...
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