JaneC

Thanks David C. I'd heard the term before but was never really sure what it meant. Jane

Ray, I just had a thought . . . Did they stop your Decadron all at once or did they taper it down? If they stopped it abruptly, that could be enough to really make you feel very, very crappy. I'm just wondering if that could be the cause of you not feeling well and maybe not the Ritalin. Just a thought- Jane

Larry, I hadn't seen that one before - I like it! Jane

I hate to admit it but I'm not sure what PCI stands for. Also, do they do it in people only with NED or is it used in ED, too? Jane

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Dean, Happy Birthday to you! (you're so lucky you don't actually have to hear me sing this - it's waaaay better to just read it and imagine it being sung by your favorite female singer) Jane

I'm a nurse and I agree - hospitals (and clinics for that matter) are scary places. I think it is so important to always have a patient advocate/support person with you ALL the time and to not be afraid to speak up if something doesn't seem right. You might be viewed as a PITA - but so what! Jane

I agree that the consistently long waits (1 hour or more) are disrespectful. If it's a continual problem, the scheduling should be adjusted and I'm a big believer in letters to administration to get things changed. I work in a diabetes clinic and I know the doctors often have little control over the scheduling but it's when patients complain (to the right people) that's when things get done. My favorite incident at the oncology clinic was when the doctor came in and said "Oh, I'm glad to see a smiling face. I was starting to get depressed with all of the sad faces." What??!! I guess they never told him in medical school that people with cancer may get a little "down" sometimes. GRRRRR! Ok, now I've vented. Jane

Elaine, With all of these variations in definitions for response rate, this doesn't seem like a dumb question at all . Jane

My understanding is that 10% of the people will respond to the drug. My doctor told me that response is considered to be "shrinkage" or even just "no new growth". Jane

Sending Lots of prayers your way! Jane

Thank you for letting us know how TBone is doing. I am saying prayers for all of you. Jane

Memere, Welcome to this site. Everyone here is really supportive and you can get a lot of good information and feedback. Jane

Cheryl, I'm so happy for you! Jane

Margaret, Dave, & Karen, YEAH!!!!!!

Dear Cheryl, When do you see your onc? The sooner, the better so you can have some answers. I totally agree that you will feel better when you have a plan of attack. Meanwhile can you do anything to take your mind off it - even for just a little while? Things that work for me: trashy magazines, rented movies, or even dumb games on the internet - my favs are Zuma and Collapse at MSN. I've also been doing some Reiki sessions. After a session, I have alot more emotional energy to deal with this stinking disease. I'm also a very strong believer in the visualization of wiping out the invading predators. I'm saying prayers for you. Jane

Dear Tess and Rob, I am so very sorry you are having to go through this. I am praying for you both. Jane

David, I am soooo sorry. I vote for the names "gone and goner" (sorry, don't remember who suggested them). You are so much stronger than they are - you can beat them! Jane

Is anyone taking apricot kernels or laetril? If you do, how many kernels a day do you take? I've started taking them for about a week but I'm nervous about them. I have felt more fatigued but that seems to come and go no matter what. What's everybody opinion on them? Thanks for your input- Jane

Elaine, Thanks for the information. I'm taking tons of supplements too. I just added several more but have been having some concerns about how they're all interacting together. Jane

Thank you all for your stories. I came to the site tonight to ask how to deal with the fear and anxiety I was feeling (which always seem worse late at night). Your stories made me feel soooo much better and reminded me I'm not alone. Thank you for sharing your miracles and the power of God's love- Jane

Thanks Elaine - good info!

Cheryl, I've heard good things about the combo of Avastin and Tarceva (sp?) too. I'm currently in a trial taking Avastin along with and after 6 carbo/taxol cycles. I wish I would have known more when I was making my decision about what treatment/clinical trial to use because I think you're right, doctor's often promote the trials they are involved with. It may be because they're not aware of some of the other trials that are out there . . . or (hopefully not) it's because they do get money from the drug companies for each patient they enroll in the clinical trials they are involved with. Hang in there. I think it's great that you're so proactive. Ginny - Thanks for the website. I've bookmarked it for future use.

I agree with everyone else. I would request a CT of the chest and abdomen because this disease can be pretty sneaky and there can be mets in other places while the chest can look OK. You have every right to get the very best care possible. I wonder . . . if he was the one with lung cancer, would he think a chest x-ray was sufficient?

There's more and more evidence in the medical literature that people with diabetes (therefore more likely to have high blood sugar levels) are more likely to develop cancer. To me, this supports the idea that sugar feeds cancer. I'm trying to really limit my sugar/simple carbohydrate intake (easier said than done).

I don't think you should ever hesitate to call the doctor/nurse/PA if you have a question or concern. I'm a diabetes nurse and I always tell my patients, "if you're wondering whether you should call the doctor or not, the answer is always YES." Alot of times it's easier to talk with a nurse or physician assistant rather than the doctor (but that could be the nurse in me talking ).