dramyg72 Posted May 4, 2009 Share Posted May 4, 2009 Last july a routine chest xray showed a tumor in my fathers lung. Biopsy ruled cancerous. PET scan and CT scan showed a small growth on adrenal gland but thought it was an adenoma. He was fortunate enough to get into a trial study where he did radiation twice daily and chemo once daily for 5 weeks. It was horrible on him...but we were told it would be (oh sorry...they tried to remove the tumor surgically but it was to close to his aorta to get to). Last week was his follow up PET scan. Tumor in lung has shrunk and dead and shows negative activity. However his adrenal gland has gotten bigger so they did a biopsy and it is cancerous. He is now Stage 4 with adrenal mets. Docors still optimistic, they say with 4 treatments they will ablate the adrenal and start him on Tarceva. I am so confused I don't know what to do. I look at STATS and they are all so scary, and I can't get a grasp on what Tarceva exactly is indicated for. The literature says it's for those unresponsive to chemo. Are they using it on people without present tumors as a "precautionary" therapy. HELP Quote Link to comment Share on other sites More sharing options...
jstdzy Posted May 4, 2009 Share Posted May 4, 2009 Hang on! This is an area that I'm not familiar with, but people will be posting soon. The one thing I am familiar with is the stats about cancer. Don't read them! None of us is a statistic and we all react differantly. So take a deep breath! It is scary, very scary. I just read one post where one of our members has been stage IV for over 7 years. Statistics don't really apply to individuals. People will be posting soon! Dana Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted May 4, 2009 Share Posted May 4, 2009 HI and Welcome, Sorry to hear about your dad but glad you found us. That's (I think) me Dana is talking about. I also have mets to my adrenal glands that we have been keeping an eye on since day one and now was diagnose recently with adrenal deficiency and taking meds. Right now my Lung (stable since dec06) Cancer is the least of my troubles, go figure. As mentioned by Dana your Dad is not a statistic, we have many members here who have been cured or have lived many many years with it. Below are some links to do some research to help you, it is overwhelming at the beginning and a lot to take in. Also go to the Tarceva Website for more info and there is a toll free number you can call them to ask questions. Take in one day and one step at a time. RESEARCH as much as you can-- KNOWLEDGE is the key! Also get your Dad into some type of support group if possible, don't go it alone. PM anytime if I can be of help. Might not get to it for a day or two but I always respond to my Pm's. Stay with us and let us know how things go, someone has ben there/done that. Hope this helps and prayers for the best. Rich http://www.tarceva.com http://www.tarceva.com/patient/index.jsp http://www.tarceva.com/patient/caregiver/index.jsp http://lungevity.org/l_community/viewto ... 585#163585 (Helpful Links / Questions to ask your Doctor) http://www.tarceva.com/patient/contact.jsp Contact Us Clinical Trial Information Support Line For inquiries about our pipeline products and clinical trials, please submit a request through our information request form or call (888) 662-6728. Tarceva Access Solutions Tarceva Access Solutions provides coverage and reimbursement support, patient assistance and informational resources for both health care providers and their patients. Phone: (888) 249-4918 Fax: (888) 249-4970 Hours Available (Pacific Time): 6AM-5PM M-F Web: www.TarcevaAccessSolutions.com Drug Safety / Adverse Events Contact the Drug Safety Department at OSI Pharmaceuticals at (877) 827-2382 to report any adverse events experienced by patients receiving Tarceva. Hours Available (Pacific Time): 7:30AM-4:00PM M-F Voice Mail available 24 hours a day, 7 days a week Genentech Corporate Headquarters Phone: (650) 225-1000 Fax: (650) 225-6000 Mail: Genentech, Inc. 1 DNA Way South San Francisco, CA 94080-4990 Additional Genentech Contact Information is available at: www.gene.com/gene/contact/inquiries-info.html OSI Pharmaceuticals Corporate Headquarters Phone: (631) 962-2000 Fax: (631) 752-3880 Mail: OSI Pharmaceuticals, Inc. 41 Pinelawn Road Melville, NY 11747 Additional OSI Pharmaceuticals Contact Information is available at: www.osip.com/contact Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 4, 2009 Share Posted May 4, 2009 Hi, welcome to the group! It sounds as if your dad had an exceptionally good response to the chemo. Do you know what specific chemo drug(s) he had, and do you know the cell type of the tumor found in his lung? Since you mentioned "stage 4" it's probably non-small cell lung cancer (NSCLC), and the main cell types there are adenocarcinoma (most common), squamous cell carcinoma (not quite as common), and large cell carcinoma (relatively rare). Tarceva is a "targeted therapy," a daily tablet taken at home, and it was initially approved by the FDA as a second line treatment for those who had "failed" a previous chemotherapy regimen. I think this may be the source of your confusion. That statement doesn't mean the patient was never responsive to the first chemo (you dad obviously was), but that he had become unresponsive to it, as indicated by the growth of the adrenal met, which had probably mutated and developed a resistance to the chemo. Since your dad was on a clinical trial, it's possible some extra testing was done on the tissue samples from his lung and adrenal gland, which may have indicated that one or both could be quite responsive to Tarceva. Do you recall mention of a test for an "EGFR mutation"? I'm already over my head here, so let me suggest that you post a question (including any additional information which you have available) to cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Yesterday a couple of us recommended GRACE to another new member, and he already has an answer from Dr. West. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 5, 2009 Share Posted May 5, 2009 Hi there and welcome to the group. You have gotten some excellent advice and good information already. This is all so scary but many here have walked in you and your dad's shoes. There is always HOPE. Please keep us posted on how you and your dad are doing. Sandra Quote Link to comment Share on other sites More sharing options...
Patti B Posted May 9, 2009 Share Posted May 9, 2009 Hi and welcome!!! First of all, I am sorry you need to be here but this is a great place for info and support. Secondly, PLEASE NEVER LISTEN TO STATS!!!! I was told (I am Stage IV) that I would be lucky to make it to 12 months and here I am at 31 months and I just had some shrinkage in my tumors!!! So never, ever listen to those!!! And most importantly, never, ever give up!!!!! You have already gotten a lot of good information from others; there are many chemo options available out there so hang in there!!! Keep us posted on how dad is doing, and please remember to take good care of yourself, too!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
fillise Posted May 10, 2009 Share Posted May 10, 2009 Welcome! Here's another reason not to lisen to "the stats." My mom, at 76 was diagnosed with stage IV nsclc in January, 2007. We are now at 27 months post DX and having completed her second course of chemo, she is currently not on any treatments and feeling goof. Folks here like blowing the stats to pieces. That's only one of the things that makes this board a great place to be when you need it. Susan Quote Link to comment Share on other sites More sharing options...
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