CancerCompass message board discussion started by Nick62 on 8/13/2005 http://www.cancercompass.com/message-board/message/all,2728,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have non small cell lung cancer and I have been told after 3 weeks of testing, that it is a stage 3B-4. It is not operatable, no radition can be had. The only thing offered is a clinical trial. I was told I had 6-9 months without treatments, and maybe a bit more with treatments. Is anyone ever cured from non small cell?? thank you Nick62 Sat, 13 Aug 2005 00:00:00 GMT Hi Ray Like you I was diagnosed with non-small cell lung cancer with brain tumors. I was diagnosed a year ago this month. I had brain surgery to remove a large tumor also 2 that were lefty alone. I was told by my radiologist that 1 had about a 30 percent chance that radiation would work on my brain. After 2 weeks of radiation the tumors were gone and have not returned after about 4 brain scans. As for my lung I went thru almost 4 straight months of chemo and after PET scan should the only cancer left was in my lung. After a pet scan in June should the cancer was getting active again my doctors decided to go with radiation and chemo. I just finished 32 radiation treatments and about 7 chemo treatments so now have to wait about 6 weeks before another pet scan and hope it is gone. Anyway what I wanted to say is yes I think there is lots of hope it's just a matter of getting the right treatment. So I would say ray that if your not happy contact CTCA and talk to them I have read a lot and they seem to have much to offer. No matter how my test returns are I plan to go to CTCA for a consultation. So I would recommend that you might do the same. Just talking to them made me feel so much better. So ray I'm sorry to have been so long but thought maybe by telling you a little about my story might give you some hope. I wish you luck and will be praying for you and your family and would love to here from you. Good luck John northeast pa. John91 Sun, 14 Aug 2005 00:00:00 GMT John. Please get a second opinon.When my husband was diag on May 23rd our first surgeon would not stage it for us he said maybe 3 maybe 4 and he was very negitive about surgery. We went to Moffitt who was referred to us by our ONC and surgery was done on my husband july 26th and the final report showed that his stage was 1b. Even though they got all the known cancer out we will start Chemo next week. Please get another opinon and if needed a third. With Chemo being the way it is now they will find a combo to fit your cancer. My husbands Cancer was over 10 cm large btw. Prayers to you Lorrie Elkiesmom Wed, 24 Aug 2005 00:00:00 GMT I can't answer that question but I can tell you about a drug called Tarceva. You need to look it up to see all the particulars on it. I have non small cell lung cancer and was diagnosed in May 2005. I was given 3 months to one year. It's now 6 months later and I'm feeling soo much better with this drug. I was also told that surgery was not an option and neither was radition. This line of treatment might be something you would like to discuss with your doctor. Jeanne Jelly Bean Wed, 02 Nov 2005 00:00:00 GMT jelly bean,did you have plurel enfusion? my husband don has stage 3b adenocarcinoma lung cancer with plurel enfusion inoperable tumor in lung. he is now since last night taking tarceva 150 mg. don was diagnosed last aug,2005,what is next? please reply,priscilla,wife to don. Priscilla Sat, 07 Jan 2006 00:00:00 GMT Hi Priscilla, I'm not sure what you mean by Plural Infusion but I have had to have 6 fluid removals from OUTSIDE my lungs. The fluid kept building up and causing chavoc with my breathing. I had two Chemo's and it wasn't helping...so they performed surgery. This was to seal the area where the fluid was gathering. It obviously worked, because since then I have had no problem breathing and was able to give up my oxygen for the past three months. I was diagnosed in May 2005 with Stage 4 Inoperable Non Cell Lung Cancer. They decided on Tarceva 150mg because I did not have a good reaction to Chemo and I never have smoked. I have been talking Tarceva since July and finally I'm starting to feel much better. Your husband will most likely have several side effects that won't be very pleasant, but if he can get through this, he will see alot of improvement in a short time. You need to keep coming back to this site and ask questions because everyone here will help him get through these side effects. Your doctor also will be of great help. We can't give out our email address because of the policy, but if you ask a question here, someone will help you. Good luck and have faith. Jeanne Jelly Bean Sat, 07 Jan 2006 00:00:00 GMT Hello, So glad to hear from you! When Don was diagnosed that fluid that collasped his lungis called pluerel enfusion and it had cancer cells in it. When they drained the fluid they introduced a chemical that caused the lung to stick to the side walls so the fluid can't reaculminate. But in his next cat scan some of the fluid came back,since that time things have stablelized or gotten slightly worse. Since then he's taking chemo for 6 rounds of Taxol and Gemzar with questionable results. Avastin was added the last 2 rounds and now 4 weeks after they stopped chemo and Avastin his blood pressure is running 190 over 110. His doctor ordered Inderal and after 2 doses his blood pressure is 176 over 113,with pulse of 61. At the doctors office Thursday it was 140 over 90,which for Don is high-Don usually runs 120 over 70 but with chemo it's been higher,he'll call his doctor in the morning to see what can be done about this. Avastin has this type of side affect,we were praying this wouldn't happen-anyone else with this problem? Started Tarceva 2 days ago so it's too early to expect results(?) We are praying for a miracle. We thought Don was going to get Tarceva and Avastin at the same time,but that didn't happen. Doctor said he would have to get worse before he could be on more chemo. Starting to get confused.....Priscilla wife of Don. Priscilla Sun, 08 Jan 2006 00:00:00 GMT HI ... this Plural Infustion is the same thing that was done for me, except I didn't know the name of it. For me, it's holding soo far. Every month my doctor checks to see if the fluid is gathering, and it isn't. So I got lucky in that respect. Have some faith that Tarceva will help. It's much too early to judge. By now he has only had it for three days. It will take awhile for your husband to start feeling a bit normal once again. I don't remember how many days it took for me to realize that I was feeling better because I had felt soo bad for soo long. The drug you mention 'Avastin' was never offered to me, so I don't know anything about it. All I know is: I am soo glad that I'm not on Chemo anymore. Those were the worse days of my life. I was 'out of it' for two full months. Keep in touch and so will I. Jeanne Jelly Bean Mon, 09 Jan 2006 00:00:00 GMT Jeanne-my husband don's blood pressure is 197 over 113 tonight-we saw his doctor yesterday and he increased his blood pressure medicine-don is on 3 blood pressure medicine. He sees his oncologist next week. Is there some other type of doctor we should be seeing???? I don't know who else to talk to about this other than you,and I thank you for Your prayers and support. Don finally got a rash on his chest and nose,chest has cleared up and his nose is better. Right now he is in bed ,he said he was cold so I gave him another blanket,he has a terrible headache. He's losing some of his appetite. How are you doing? You are an amazing person,you are a teacher and you are taking tarceva and still going to work,we pray for your well being also,take care,priscilla,wife to don of 41 years. Priscilla Thu, 26 Jan 2006 00:00:00 GMT Hi Priscilla, First of all, I'm not a doctor or a teacher, I'm just telling you my experiences with this awful disease. If you think you need to get a second opinion on the blood pressure medication, maybe you should check with your primary doctor. Or ask your onocologist to suggest another doctor you can see. My blood pressure has gone up and down like a yo yo. If I'm anxious, it's through the roof...but never as high as your husbands. I am also cold all the time. I usually have an extra heater on me if I am sitting at the computer or watching television. I believe it's because we aren't getting enough to eat. Your husbands appetite will decrease, but you need to encourage him to keep eating even if he doesn't want too. It will warm him up, and make him feel better. There is medication that will increase his appetite...I have it, but rarely take it. Ask your doctor about this. I don't like the way it makes me feel. But I am trying really hard not to lose any more weight. Smoothie drinks are really good. You can use milk and fresh fruit and honey or sugar to sweeten it. Blend it with some ice cubes and I'll bet your husband will accept it. You can also improvise and use other stuff, just as long as you can get him to keep eating, he will feel better. I am not working anymore. I retired just a few months before I was diagnosed with LC because I was feeling soo poorly. My prayers and thoughts are with you and Don. Don't forget to take care of yourself too. You won't be able to care for him if you get sick too. Good luck, Jeanne Jelly Bean Fri, 27 Jan 2006 00:00:00 GMT Jeanne,thank you so much,and to those who would like to chime in. I'm printing this off to give to don to read. He's pretty bad this morning. So he's taking his blood pressure right now,and i'm getting ready if he gets through to his doctors--he's been having a lot of trouble! Thank you,thank you so much for being here for us-I was hoping you would respond,that's the first thing I done this morning,check my e-mail to see if anyone would respond,yes! Priscilla wife to Don Priscilla Fri, 27 Jan 2006 00:00:00 GMT Hi...Sorry to hear that Don wasn't feeling well this morning. Hope by now you have been in touch with the doctors and they have given him something to make him feel better. There is a little square at the bottom of each message section (when you type back your reply) that you can check off and this site will let you know if you have a reply. That's what I do. Sometimes it will be weeks before I come back. Check it off, so you will know someone replied back to you. Let me know how Don is doing now. We all would like to help you through this bad time, but you do need to get your doctors involved too. I can only answer questions that also pertain to me. Take care and have a good weekend. Jeanne Jelly Bean Fri, 27 Jan 2006 00:00:00 GMT Hi there, I too was diagnosed with NSCLC in April 2005. Unlike you, I was not told that it was uncurable. Of course, I don't know all of your specifics, but it's a terrible thing to take away someones hope. There is always HOPE. My cancer has metasticized to several other organs and I'm back on chemo again. I'm looking at alternative treatments in conjunction with the chemo. When I first went back on chemo in June, my blood counts plummetted to rock bottom. The doc made dosage adjustments to no avail - so now I am on to plan "B". My point about hope. I feel great. No one would ever know that I am as sick as I am. I don't look sick and I don't act sick. Don't get me wrong, it's not a cake walk either. BUT I have great faith in GOD. I have many many family and friends that are in constant prayer for me. Without GOD I could not possibly have this much hope and feel this good. I also have an 8 year son that I have to hang on for. We all trust in GOD, including my son. Write back if you're able to. God bless you, Rosilyn Rosilyn Wed, 02 Aug 2006 00:00:00 GMT