CancerCompass message board discussion started by johnpattie on 4/11/2008 http://www.cancercompass.com/message-board/message/all,22973,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I would like to know if anyone has been on Tarceva for longer than a year and if anyone has had their tumor shrink from Tarceva? Also please any help for the awful rash. I have it very bad and nothing has helped. Also-anyone out there from Georgia with lung cancer? Could use a pal. I live in Acworth Georgia.Thank you,John johnpattie Fri, 11 Apr 2008 00:00:00 GMT  On 4/11/2008 johnpattie wrote:I would like to know if anyone has been on Tarceva for longer than a year and if anyone has had their tumor shrink from Tarceva? Also please any help for the awful rash. I have it very bad and nothing has helped. Also-anyone out there from Georgia with lung cancer? Could use a pal. I live in Acworth Georgia.Thank you,JohnHi John,I've been on Tarceva for 18 months now.  I have stage 4 with tumors in both lungs.  The Tarceva totally shrunk the tumor in the left lung and the one in the right has been shrunk by 57%.  My next scan is in a few weeks to see how much more it has shrunk.  Had a chest x-ray 2 weeks ago and no tumors showed so I'm hoping to be NED (no evidence of disease).  I went through the rash thing and it still comes back from time to time.  My onc gave me a prescription for clobetasol propionate 0.05% which is a white cream to apply to the rash. The rash is a very good sign that it's working.  It worked great for me.  Tarceva is the only treatment I have ever had, no standard chemo/radiation or anything else.  It's a great drug.  Did you have an EGFR blood test?  If you did, check the number.  If it is greater than 60, the Tarceva will probably work for you.  You will read from many that it only works for non smokers.  That is not true.  I've been a smoker for over 30 years and it's working for me.  Another great thing about Tarceva is it is one of the few chemos that crosses the blood/brain barrier which helps prevent mets to the brain.  My CT brain scan came back clear 2 weeks ago and so far there have been no mets in the brain or anywhere else.  I'm in Florida by the way.    I'm usually on the board at least once a day so if I can help with anything, let me know. Chessie Sat, 12 Apr 2008 00:00:00 GMT My Dad has stage 3b Non Small Scale Lung Cancer in both the lung and in his pleura. He is 72yr old and an x smoker. The Doctor has started him with Tarceva. They would not give him chemo yet, they want to see the effect of the drug for a month. I want to know if there is any one similar like him. family1 Sat, 12 Apr 2008 00:00:00 GMT  On 4/12/2008 Chessie wrote: On 4/11/2008 johnpattie wrote:I would like to know if anyone has been on Tarceva for longer than a year and if anyone has had their tumor shrink from Tarceva? Also please any help for the awful rash. I have it very bad and nothing has helped. Also-anyone out there from Georgia with lung cancer? Could use a pal. I live in Acworth Georgia.Thank you,JohnHi John,I've been on Tarceva for 18 months now.  I have stage 4 with tumors in both lungs.  The Tarceva totally shrunk the tumor in the left lung and the one in the right has been shrunk by 57%.  My next scan is in a few weeks to see how much more it has shrunk.  Had a chest x-ray 2 weeks ago and no tumors showed so I'm hoping to be NED (no evidence of disease).  I went through the rash thing and it still comes back from time to time.  My onc gave me a prescription for clobetasol propionate 0.05% which is a white cream to apply to the rash. The rash is a very good sign that it's working.  It worked great for me.  Tarceva is the only treatment I have ever had, no standard chemo/radiation or anything else.  It's a great drug.  Did you have an EGFR blood test?  If you did, check the number.  If it is greater than 60, the Tarceva will probably work for you.  You will read from many that it only works for non smokers.  That is not true.  I've been a smoker for over 30 years and it's working for me.  Another great thing about Tarceva is it is one of the few chemos that crosses the blood/brain barrier which helps prevent mets to the brain.  My CT brain scan came back clear 2 weeks ago and so far there have been no mets in the brain or anywhere else.  I'm in Florida by the way.    I'm usually on the board at least once a day so if I can help with anything, let me know.  johnpattie Sat, 12 Apr 2008 00:00:00 GMT Thank you so much for making my year! I get great news from my doctor but hearing such wonderful reports about Tarceva from someone going through the same thing as me is just giving me an extra dose of hope. I too just had a brain scan that came back normal. I get blood work done all the time but will ask about EGFR test.I know little about that stuff yet. I am happy you are doing so well for yourself, others like us and myself! I had regular chemo before and radiation which shrunk one tumor and then another one appeared. So-Tarceva was the next step. I hate the rash but hey maybe even 5 years ago-I'd be gone by now. The rash is a small price to pay. I just really needed to hear about tumor shrinkage!! I'll learn to calm the rash down as mine is bad-all over my face/body and sometimes painful. No pain-no gain right!! Thank you again-my wife and I are dancing from your reply!!  johnpattie Sat, 12 Apr 2008 00:00:00 GMT John, I sent you a private reply.  Chessie Sun, 13 Apr 2008 00:00:00 GMT Thank you-we just sent you one back. johnpattie Sun, 13 Apr 2008 00:00:00 GMT Hi John and Patti,Just wondering how you were doing?  Did you get the rash calmed down?Nancy   Chessie Wed, 23 Apr 2008 00:00:00 GMT Hi JohnJust wanted to let you know that my dad has been living with NSCLC  since 2005. He has been on Tarceva for the past 2 years and looks and feels great. This drug has worked wonders for him. The rash comes and goes. Be careful in the sunlight, even sitting indoors near a closed window during the heat of day can cause the rash . Since being on this medication my dad has started to view his cancer has a chronic condition that he has managed to control. His tumor has shrunk and is completely out of his nodes. Sterling Fri, 25 Apr 2008 00:00:00 GMT  On 4/25/2008 Sterling wrote:Hi JohnJust wanted to let you know that my dad has been living with NSCLC  since 2005. He has been on Tarceva for the past 2 years and looks and feels great. This drug has worked wonders for him. The rash comes and goes. Be careful in the sunlight, even sitting indoors near a closed window during the heat of day can cause the rash . Since being on this medication my dad has started to view his cancer has a chronic condition that he has managed to control. His tumor has shrunk and is completely out of his nodes. Thank you so much for this e-mail! Two years! Wow! I was in the ER the other night as blood was running out of my nose and when I coughed a lot of blood came up. Ends up there are a lot of sores in my nose that bled back into my throat. I do not know if it is from the Tarceva but thought I should make people aware of this. Doctor said to use Afrin nasal spray in my nose to help stop bleeding and hold nose-pinch it closed on and off for 20 minutes. Also use saline spray everyday to keep nose moist. I am so happy to hear your dad is doing so well and feels so well! God bless him!John  johnpattie Sun, 27 Apr 2008 00:00:00 GMT