teetlee

Oh Sam!! What great news. You are really on your way now to making a great comeback. I like the name HARVEY, you know, the invisible rabbit that Jimmy Stewart had. Or remember that old song by Peter, Paul and Mary...Stewball was a race horse. When I was a kid we named our German Shepherd Stewball and my dad was so mad. Here is this big, powerful, smart dog and he answered to Stewball. It was funny and we loved him so much. Enough of that. Just so happy to hear good news. Keep it up. Teet

Hi John, This was interesting, but have to admit I didn't understand everything I read. What is the difference between a carcinoid and a carcinoma? I have noticed that Carleen's husband is dx'd with carcinoma and is being treated like sclc and that your mom had been dx'd with large cell carcinoma. What kind of treatment did she have? My doctor has told me I am definitely atypical carcinoid. What I have read on the internet is that this type would not be treated with chemo. Yet my onc. says it could be but I have already had the ones that he would use. I have been currently using sandostatin, 3 shots a day, and will have x-rays, blood work, and 24 hour urinalysis on May 6. These are the first tests since starting the sandostatin. Teet

Hi Don, I just wanted to echo the sentiments I've read here. I have wanted to say the same things but wasn't quite sure how to express them. Glad that somebody else started this thread so we could all add to it. It is true your gentleness, kindness, postiveness, and your faith all ring through loud and clear in every post you write. I'm so glad I found this site not only because of your great advice but for all the different "advice and encouragement" I read every day. I have been helped so much just by reading about other people and how they are handling their situations. Thanks to everyone for all their contributions. Teet

Way to go Sam!!!! I'm so happy to hear such good news. Especially that you actually saw a few patients. It sounds like you are diligently fighting to get your life back. I pray that you get back 100% of it. When I was on high doses of prednisone I gained a lot of weight. I was up to 210. I had never weighed that much my whole life. But in Apr. of last year I crashed and almost went into a diabetic coma. That's when i was diagnosed with diabetes also. The doc. said it was type 2 brought on by steroids. I was also using a steroid cream over my entire body because of a rash reaction to Iressa. Anyway, my point is, I had to go on a strict carb counting diet and in this past year I've lost 65 lbs. Hopefully when you take less prednisone your weight problem will correct itself. I'm down to 10 mg. a day and hoping to go to 7.5 this summer. Sam, I sure hope to see you posting more and more on the good news forum. Teet

Renee, I'm so sorry for your pain and sorrow. I really wish there was something more I could do besides praying. I want to echo Tiny's comments. I lost both my mom and dad to lung cancer and both times hospice came. They really made it easier to deal with the day to day things and took care of alot of things we just didn't know how to. I think both my parents were pleased to be at home with loved ones surrounding them. You and your mom are in my thoughts and prayers. Teet

Tiny, This is great news. Hope the trend continues. Teet

Hi Dave, There is nothing more life affirming than to hold a new life in your arms. I'm so happy you had that experience and I know you will have many more. I have one grandchild, a girl. I haven't seen her since she was one month old. I've been too ill to make a trip to Dallas. But my son and his family are coming to visit for Mother's Day. Isabelle, my granddaughter, will be almost 6 months old by then. I'm so excited and can hardly wait. To me, this is the kind of stuff that puts lung cancer on the back burner and even lets you forget about it for a while. Treasure the good times!!!! Teet

Congratulations Grandpa Dave!!!!!! What a wonderful blessing in the midst of turmoil. Teet[/b]

Really awesome news!!! I'm so happy for Lucie and you, Don. We will continue to pray for a clear scan. Teet

Shordy, I'm so happy to hear such good news about your dad. Hope things continue to improve. Teet

HIP HIP HOORAY FOR TINY I'M SO GRATEFUL TO THE LORD FOR YOUR GOOD REPORT AND I KNOW YOU MUST BE COMFORTED ALSO. YOU SCREAM, I SCREAM, WE ALL SCREAM FOR ICE CREAM

Fay...what wonderful news. Will continue to pray for more of the same. Teet

For those who were interested in the list of doctors and hospitals doing rfa, I found the list under a post I did on rfa in the late stage nsclc forum. If you find the post I did and scroll down there is a list that Cary had posted. Hope this helps. Teet

Hi Minnie, Glad to hear your mom just had a reaction and is doing better. I'm glad you were able to talk to her and ease your fears. Prior to my first carbo/taxol I was given steroids and benedryl just in case I were to have a reaction. Also it was given in the hospital as a precaution. I hadn't had any history of reactions but I was glad they took precautions. Teet

Sorry you hit a brick wall in Tx. but not totally surprised. At the risk of sounding ignorant...what is a pancoast tumor? I'm sure anything with the word tumor behind it can't be good. Teet

Hi Lee-Ann, I'm sorry to hear about your dad. I know you will find help, good advice, comfort, and great listeners here at this board. It's really tough to live with and accept when doctors make mistakes. Believe me I know what I'm talking about. I was misdiagnosed for over 2 years. It doesn't make it any easier to trust the next doctor that comes along. You can trust the people here...they (we) generally tell it like it is. I sincerely hope and pray that as your dad's health improves, his outlook will become more positive also. Teet

Hi Shordy, I'm so happy to hear the great news about your dad being able to stand. It sounds like things are better for you and your dad. I remember when my father was ill with sclc and it was my day to care for him. I had to shave him and I was petrified. But when I got done he said to me, " Of all the girls (7) you have the softest touch." I cried for hours. This was probably the nicest thing my father ever said to me. He died a few days later. Teet

Hey Karma, I just love your positive attitude. Your sense of humor will help you get through all of this. Years ago when my parents had LC there were family members who thought that the only way to deal with this was to be truthful. Amazingly their "truthfulness" was all so negative. Meaning....prepare for their deaths. I have a large family so the emotions were all over the place. Looking back I realize that a positive attitude was so much healthier to have. These same "truthful" people are still acting out with my cancer. I choose to ignore them. Send your aunt back where she came from and let her take a good portion of her negative feelings with her. My prayers and thoughts are with you, your dad, and the rest of your family. Hope you are enjoying a nice weekend. Teet

Hi all, I was wondering if anyone has heard of a book named "How to Fight Cancer and Win" by Dr. Johanna Budgwig. She is a European research scientist who wrote this book many years ago and the "powers that be" kept it from being published in the US. Of course, the cost is $20 plus shipping and handling. The only thing in reference to the book was about the lack of certain nutrients in your diet. I've heard that there is supposedly a "cure for cancer" only big business and big money has blocked this knowledge from the public. I'm just cynical enough to believe this is true. Teet

Shordy, you don't sound like a horrible person, you sound like someone who's in a lot of pain. It's obvious how much you love your dad. Maybe having arguments with his daughter is how your dad shows his emotions. Mabye he is trying to keep you from hurting too much. I watched both my dad and mom die of small cell and we had some really bad arguments. Not just between the kids and parents but between the kids. Remember, I'm the one with 10 siblings. The older ones thought they had all the answers and that mom and dad should listen to them. The bottom line is ... its your dad's disease and he has to make the decisions. My heart just aches for you now because I know you want to be close to your dad and help him in any way you can. Maybe you need a little down time away from him. Get a new perspective...get a new grip. Shordy ...you need to come back to this website so we can give you the support and positive vibs that you need. Besides you make me laugh when you talk about your siblings It reminds me of my family. I bet you sneak a peek. I'll be praying for you and your dad. (((((((((((((((HUGS))))))))))))))) Teet

Karen I didn't do any tests that called for a diet. Although I did read about them, my onc. didn't seem to think it was necessary. I didn't do a blood test because I take a medication called Serzone which has something to do with the serotonin in my body and my dr. was afraid I would get a false return on the test. I will be starting sandostatin soon. It is very expensive and the only way my insurance will pay is by mail order. I tried all kinds of chemo and none of them worked because I didn't have nsclc but had atypical carcinoid. From the reading I've done on the internet and talking with my onc. this carcinoid sounds like it grows slower than any of the other cancers. My cancer was found over 2 years ago and it hasn't moved one bit either way.I understand the sandostatin will help with the symptoms and also contain the tumor. I have tumors in my left lung, lymph nodes of the media stinum, and in the liver. I have developed rheumatoid arthritis and diabetes. These may or may not be a result of the carcinoid. Although they all involve the endocrine system. Probably more info than you wanted. Hope all goes well with your husband. Teet

Dear Peg and Bill, Hang in there. I know you are discouraged now but things can turn around for good just as quickly. Please know that we are all praying for you and that the rest of your tests will show no new growth. Teet

Yes Karen, I did have a 24 hour urine test for 5HIAA. It was positive for a high serotonin level. A normal would be less than 10% mine was over 70%. There is also a blood test that can be done. But my onc. said I didn't need it. Hope things work out well for you and your husband. Warm regards, Teet

Hi John. Thanks for the encouragement. According to my onc. we will start with the 3 injections a day. If I tolerate that well then we will go to the LAR once a month. I'll let you know how it works out. Teet

Well, I got my test results back. They did confirm I have atypical carcinoid lung cancer with mets. in 2 areas of the liver. Not exactly what I wanted to hear about the liver. Later this week I will start on Sandostatin injections 3 times a day. My onc. says this will help with any symptoms and has been known to contain the tumor. It doesn't shrink it just contains it. Maybe. My deepest hope is that this drug will help with the arthritis. The onc. says that it would be very unusual for arthritis to be a symptom of carcinoid but he would not rule it out. As far as we know, I don't have any of the symptoms of this cancer i.e. high blood pressure, diarrhea, flushing,or excelerated heart beat. I would appreciate chatting with anyone out there who has had any kind of experience with this type of lung cancer. Thanks, Teet