BDurham Posted September 9, 2003 Share Posted September 9, 2003 Hi everyone: I found this message Board about a week ago, and got some time to register this morning. I am really glad to have found this group, I was having a very tough time last week trying to understand all that has been happening so quickly since Deb was admitted to the hospital for the brain tumor that they found. It really picked both of us up to hear that others have been fighting and surviving Stage IV NSLC - much of what I was finding on the Net beforehand really brought me down... We are off to get a PET scan this afternoon, and are praying for the best. My gratitude to the folks have put this message board together - the stories here have given us hope. Be back soon, Bob Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 9, 2003 Share Posted September 9, 2003 Bob, welcome to the board. It is good to have company - I also am the primary caregiver to my wife. She is 11 months away from diagnosis and doing well right now, having had chemo and radiation, and is now on maintenance. There is plenty of info and support here, so hang in there, and keep us posted. Don Quote Link to comment Share on other sites More sharing options...
norme Posted September 9, 2003 Share Posted September 9, 2003 Bob, Will say a special pray right now that the Pet only shows what you know presently... for the brain mets, there are many things they can do, whole head radiation, gamma knife, surgery, and radio surgery. my husband had whole head and the last scan shows all clear. per his dr, if it comes back will do radio surgery. Deb and you need to get prepared for a long and hard ride. There will be good days and there will be hard days. Through it all one must have HOPE. Most of us on here have described lc as a roller coaster. There are days when you really go for on heck of a ride..many ups and downs...but, we hold on tight and that to will pass.... My husband and I take it one day at a time. We don't plan for anything. We recently went to Myrtle Beach with our son and family. We didn't plan on it until the day before. If he was up for it we would go, if not we would stay home. He was up and we had a great time. It will be a year on 9/11 that he had surgery and that has been a very hard 10 months. this past 11 and 12 months seems a little better....but I sure don't think we will be going dancing for awhile....but we do enjoy being with each other everyday.... So you can see, the roller coaster is stopped right now on the top of the track..... Both of you hang in and do whatever it takes to get Deb better.. Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted September 10, 2003 Share Posted September 10, 2003 Based upon my signature you can well imagine the roller coaster ride I have been on for the past 2 years. Being told you are Stage I, then, suddenly, being told you are a Stage IV is quite a shock. I am reminded daily, as I login, that this website is about surviving and change. And that's what we're all about as well - surviving and change. You are going meet some very fantastic people here and get to know some pretty fantastic stories of hope and survival. I am glad you have found us and am looking forward to hearing more from you. Quote Link to comment Share on other sites More sharing options...
Terrie Posted September 10, 2003 Share Posted September 10, 2003 Bob- Will keep your wife in my prayers, also. I am glad you came to register - stay with us, we are all on this ride together. Terrie Quote Link to comment Share on other sites More sharing options...
BDurham Posted September 19, 2003 Author Share Posted September 19, 2003 Thank you for the replies - it is good to feel welcome. Deb's PET scan came back with confirmation of her lung mass as well as masses over both adrenal glands - and they found more activity in her lymph nodes. We have met with a few oncologists and gotten second opinions - the strongest advice we have received is to use gamma knife for her small brain mass, and chemotherapy combined with Iressa for the other tumors. We are sending samples from her already removed brain tumor to the Baylor Medical University lab in Houston for genetic testing - the advice here is that they may be able to better define treatment based on the results. Take care everyone, I will be checking back soon. Bob Quote Link to comment Share on other sites More sharing options...
john Posted September 19, 2003 Share Posted September 19, 2003 I believe the researchers have found that Iressa combined with chemo does not provide any benefit compared to chemo alone. Unless, the dr may want to try low-dose (metronomic) chemo with Iressa. Low-dose is usually tried w/ an antiandionenesis drug, not Iressa. This is just what I have read, I am not a Dr. http://www.canceractionnow.org/therapie ... anews.html This link below describes using low-dose chemo with an antiangiogenesis drug. http://www.cancerprotocol.com/low_dose_ ... erapy.html If you do not know of this site. You can find all the clinical trials in Texas at this site http://www.clinicaltrials.gov/ct/search ... er%2Ctexas I think it is good that you are getting the tests on the specimen. I would do that. It is interesting though that they have shown that the level of EGFR does not correlate with the effectiveness of Iressa (which seems to contradict logic), but that is what the studies have shown Take care Quote Link to comment Share on other sites More sharing options...
norme Posted September 19, 2003 Share Posted September 19, 2003 Bob, I know that Deb must be feeling pretty down right now and you also. Some days one wonders what else is going to happen today. I look at the present 24 hours and hope they go away fast and that the next 24 will prove to be better. God Bless Quote Link to comment Share on other sites More sharing options...
David P Posted September 20, 2003 Share Posted September 20, 2003 Hey Bob. Welcome, and it sounds like you're in tune with what you and your wife need to do. It is a good feeling to have support from people who know, and who have experienced the same things you are going through as a caregiver, and Deb is going through as the patient. Use this message board as much and as often as you need to - there are very knowledgeable and experienced people to connect with here. I hope all goes well with Deb's treatment. Take care Bob. David P. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted September 20, 2003 Share Posted September 20, 2003 Welcome Bob-I know it is overwhelming right now. Just take it one day at a time and keep coming back-this is a great place for info. Cindy Quote Link to comment Share on other sites More sharing options...
Bob.Durham Posted October 17, 2003 Share Posted October 17, 2003 Somehow my login stopped working - so I created a new one today to get back on board. A lot has happened in the weeks since I was last on - Deb started Carbo+Taxotere, had radiation X10 days, started Iressa, and did a Gamma Knife procedure last week where they found and treated 6 brain lesions. We just got the pathology test results back from the Lab - Debs EGFR is at 5.1; P53 is at 0%; Metallothionein is Positive(Avg-50%);TS is Negative;Ki-67/MIB-1 is 61% - still researching what these all mean. Thanks to all that replied to this thread - I am going to move to the Late Stage NSCLC board with the next posts... Bob Quote Link to comment Share on other sites More sharing options...
Ry Posted October 17, 2003 Share Posted October 17, 2003 Welcome, we're all here for you. Keep us posted on your wife's progress. Quote Link to comment Share on other sites More sharing options...
OhioKat Posted October 21, 2003 Share Posted October 21, 2003 thinking of you! Quote Link to comment Share on other sites More sharing options...
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