KC

Thanks John. Actually, my father doctor was in to see him this morning and did write a prescription for the Xeloda. That is all I know, as I only spoke to my dad on the phone. As far as when he was taking the Iressa, I believe at the time he was also taking a combination of chinese herbs that we received from an herbalist, maybe that had something to do with the Iressa not working. I really wish my father's onc. would let him give it another try. I called Bristol-Meyers Squibb this morning and they said that the physician needs to call them and request an application to receive Erbitux under a compassionate use program for lung cancer. She then went on to say that there are income guidelines and that if my father has too many assets or income that they won't give it to him that way. He is by no means a rich man, but he does receive his pension as he is retired. Who knows. I'm getting really confused as to which way to push. To try the Xeloda or push for the Iressa again. I know my father doesn't eat grapefruit or drink the juice. I have to do that search you spoke about to see what may have interacted with the Iressa.

Thanks for all the information John. The problem with my father's case is that he has tried almost all of the chemotherapy regimines available and he has tried Iressa, so his trying Iressa pretty much excludes him from another clinical trial with a similar drug like Tarceva. We can only hope for approval so we can get it through prescription. That is why I was looking into the Xeloda. We looked into the GVAX trial months ago and met with a dr. about it. They wanted to get the tumor from my father lung but my father did not want to have a major surgery to harvest the tumor, and I didn't push him. I hear now that they are not doing major surgeries any longer for the GVAX trial. Unforutnately, my father's pleural effusion was too small to get the cells from there and there were no lymph nodes to take it from either. My dad was diagnosed back in Dec. 2001. There were I think 3 tumors in one lung and 2 in the other. I asked the onc. at Sloan Kettering who we went to for a second opinion if he thought they were mets or if they all popped up at the same time and he believe that they metastasized from one lung to the other. I still believe to this day that they all popped up at the same time, but I don't really believe it matters, all I know is I begged for surgery and couldn't find anyone to do it. I also looked into RFA at the time, but my father's tumors were all too small and they wouldn't do that either. I want him to try Iressa again, he only tried it for 10 weeks back in May 2002. He had slight progression and the onc. took him off right away. I still think he should have continued for a while longer, but it was under expanded access at the time and the protocol was too remove, or so that is what I am told. I am asking my father to try it again, but he gets annoyed with me and says it didn't work the last time. I told him it is better than doing nothing and he kind of agrees. We still don't know the plan, CT scans were today. Dad is in the hospital trying to keep the pain from the radiation to the bone mets under control. He can only receive the pain meds through IV otherwise he gets extremely nauseous. Things were under control until the pain management dr. decided to try and give him Methadone last night in pill form, he took three doses and today the stomach problems started all over again. I feel like I am back to square one, with no way out. Sorry fro the rambling. I'm very confused right now.

Has anyone taken Xeloda for their lung cancer? I just spoke with someone at Roche Labs and they said there is no longer a restriction on diagnosis code, meaning that if your insurance covers it they will no matter what type of cancer you have. It was originally intended for Breast and Colorectal Cancer. Just wondering if anyone has already taken it and your experience. Thank you in advance.

Has anyone ever had a pain pump because they were not able to take pain medication orally due to nausea and stomach upset? If so, how did it work out for you. We are trying to control my father's pain from the radiation to his lumbar spine mets. Either the mets are still there or the bone needs to heal, I don't think the radiologist could tell from the pictures or my father didn't ask the right questions. I wasn't there when the radiologist finally showed up this morning. He said something like holes in the bone, if I press my father for answers, he gets upset, so I don't press too hard. I'll find out later what the real story is. All I know is that he said there was no new spread on the bones, the MRI showed the same as the one taken in late December. After that he had 20 radiation treatments, but the pain never went away. Vicodin worked for a while and then stoppped. He is in the hospital since Sunday keeping the pain under control with Dilaudid injections. He had the pill at home, but it didn't work at all, the injection work great. Also had a pain management doc. come in an do an epidural with corticosteriod called Depomedrol. He said it could take a few days to work, they did that on Monday night. Just wondering now about the pain pump. It's been a rough two weeks with all the pain not being under control. These bone mets are tough cookies, let me tell you. My poor father, god bless him, he's so strong and brave. Thank you all for any information. Karen

Are we any closer to approval for this drug??? Anyone? Unfortunately, insurance companies won't pay for Avastin or Erbitux for the use in NSCLC, which I find to be a great injustice! Waiting on Tarceva.

I LOVE YOU FAY! NOW GET TO KICKING THE H-E-DOUBLEHOCKEYSTICKS OUT OF ED! I'D LIKE TO GET MY HANDS ON HIM MYSELF, THAT RAT B____D! DIE ED, DIE!! SORRY FOR SOUNDING SO EVIL, BUT I'M VERY ANGRY TODAY. Karen

Sorry to hear about your pain. My father had 20 radiation treatment for bone mets to the lumbar spine area. He is still having pain. Pain meds aren't working. Started morphine today to see if this helps. Xray was taken to see if there was a bone fracture, but there was not. Radiologist says that the radiation doesn't cause pain, but I told him I disagree. He wants to do more radiation to the area, this time IMRT. We have to wait and see what the CT scans of the area say on Wed. In the meantime, I hope the morphine helps the pain, it is really bad. I have no faith in these doctors anymore. I hope they know what they are doing.

God Bless You Joe. I am so very happy to hear about your wonderful news. Have a great vacation!

Andrea, Don't give up! My father was diagnosed with liver mets back in July. He has been battling NSCLC since December 2001. Various chemos and Iressa were tried. AT the time the liver mets were found he was doing weekly carbo/taxol. He then switched to Cisplatin/CPT-11, weekly, 2 weeks on 1 week off or 2 weeks off, depending on blood counts. Last CT scan in November showed liver mets shrunk by 50%. We looked into RFA, but the dr. we saw wouldn't do it. Too many lesions on the liver and he was more worried about treating the lungs. Also, look into a treatment called radioactive microspheres. It is something like the "seeds" they implant for prostate cancer. They are now doing it on the liver and it has had great success. Do a search on the internet and I wish you the best of luck! Hang in there.

Dear Norme and Buddy, You don't even know me, but I think of you both every single day. I am praying for you. Stay strong sweet Norme. Karen

I'm not so sure about the rash indicating that Iressa is working, because when my father was on it, he had all the side effect, rash, diarreah, etc. and it didn't work for him. I hope your father has great success with the Iressa, with or without the rash! Linda, my father's name is Matthew also.

Hello everyone. My father finished his 10 radiation treatments yesterday. Ever since the first treatment it appears that he is in more pain than before he started. Does the radiation cause pain? Also, he has a bruise on his thigh. He doesn't remember hurting himself there. Could it be from the radiation? He had radiation to the lower spine/back area.

Hello everyone. My father finished his 10 radiation treatments yesterday. Ever since the first treatment it appears that he is in more pain than before he started. Does the radiation cause pain? Also, he has a bruise on his thigh. He doesn't remember hurting himself there. Could it be from the radiation? He had radiation to the lower spine/back area.

Thank you all so much for your replies. You are all such kind, wonderful, thoughtful people. If the pain doesn't subside soon, I'll ask about the morphine, but my father, I'm sure won't be into that. He won't even take the two vicodin for fear of getting addicted. He was a marine and I guess they were taught to tough it out. It's crazy, I know, I hope I can change his mind. He's so difficult to talk to lately, he's very touchy and defensive and short with me, but I understand completely. Only, he doesn't know that I understand, it's been a difficult week. I know when I'm in pain, I have no patience for anything or anyone either. Linda, we have spoke before on the other list. Thank you for your support and I hope your dad is doing well. I used to post on this list way back when my father was first diagnosed, before it was all revised and fixed up. Then I moved to Florida last January and forgot about it, as I had the website saved on my computer at work. Luckily, I found it again and that is how I found out about the TM, from Cary's post on the alternative board. I thank god for this board and I hope that I can offer the same support to all of you that you have shown me someday.

Thanks for the prayers Nancy. Thank you Don for your reply. Yes, my father is taking Hydrocodone (Vicodin), 7.5mg./750mg. every 4 hours. I don't know how much it helps, it help alot the first two days, but I guess his body adjusted to that dosage quickly. I try to get him to take two at a time and he won't. The prescription says he can. He's so stubborn, just like me. He is receiving radiation right now, 10 zaps, he is getting number 4 right now. The mets are small, but I guess they are in the wrong spot in his back (lumbar spine I think), so it's causing the pain. His onc. gave him a dose of Aredia for the bone mets last Thursday. He gave Aredia instead of Zometa. I'm glad to hear the radiation zapped your wife's bone mets, I'm hoping for the same with my father. Thanks again, Don.

Thanks Jen and Laura for the encouragement. Jen, I doubt my father is going to change his anti-depressant medication. I can barely speak to him about medication anymore with him getting angry. He's sick of it all right now. I'll see how the next few days go, sometimes he'll just pop out of the depression on his own. I'll try and talk to him again about everything, sometimes he'll say something to me and I'll know he wants to talk. I'm waiting again for that opportunity. Love to all and thanks for the prayers.

Thank you Becky. I know anything is possible and hopefully my dad will continue to fight. I wish you the best in your fight with this monster.

Thank you Cheryl and Rich for your responses. You are both so kind, everyone on this board is. Rich, my father has been on anti-depressant medication for many years, even before his diagnosis. He take 40 mg. per day of prozac. I asked him to please consider upping it to 60mg. but he refuses to take one more pill a day. I wish he would join a support group or have a phone buddy, but it's just not for him. He's a quiet guy when it comes to sharing his feelings. So I have been relaying to him for the past 2 years all the positive stories or survivors and any other positive news I hear. I'm getting the impression after this latest blow, that he doesn't want to hear it from me anymore and it makes me sad because I don't want to stop encouraging him, but I guess he needs time to sort it out on his own, so I try to back off a little. I'm just praying that the radiation kills the bone mets and that everything else will stay stable. Who knows, god willing, maybe the TM will have kicked in by now, it takes 3 full months following the intial dose to take effect. That would have been the end of December. Maybe it will work for my father. I also asked him to ask his onc. for a prescription for Iressa if he decides to stop the chemo. Although he tried it in the past, he only had very slight progression and his onc. back then took him off. I have spoken with others who now say that they had slight progression too at first on the Iressa and continued anyway and remained stable, so who knows. It's better than doing nothing and now that it's FDA approved, I think my dad's insurance covers it, but we'll see. I hate this disease, it still feels like a nightmare to me that I'll never wake up from, even after all this time.

Hello everyone. I have posted here before, but mostly just lurk and pray and laugh and cry along with everyone. My father has been battling NSCLC Stage IV since being diagnosed in December 2001. They say it is BAC. Surgery was never an option, although I begged for it because it started out with only 3 small nodules, 2 in one lung and 1 in the other. I couldn't find a surgeon to do it. He has been taking chemotherapy ever since diagnosis with a small break (about 10 weeks) on Iressa. Each time he tried a new chemo drug he had initial shrinkage and stablization and then progression, so it was on to the next. His latest chemo has been Cisplatin and CPT-11, he started that in July after they discovered liver mets. His last scan at the end of November showed shrinkage in all lung nodules (there are many) and 50% shrinkage in the liver! We were thrilled. He continued with the weekly Cisplatin-CPT-11, even though it knocked the heck out of him, but he figured it was working. I also had started him on TM therapy at the end of September. Lately his red blood counts have been taking a beating and he has had 2 transfusions so far along with Procrit. He had been having back pain on and off for a while, but finally told his onc. as the pain was not letting up as much and last week we discovered he has mets to his hips or spine. That is what was causing the pain. He feels fine otherwise, except for this pain in his back. He can't seem to get a break. When one thing goes away, something else pops up. He has now just received his first 2 of 10 radiation treatments. He is in alot of pain in his back and my heart breaks for him. He is so disgusted, depressed and just about ready to give up. I don't know what to say to him anymore, he needs to hear from people who have been there and done that. He doesn't really talk to anyone about what he is feeling or what is happening, especially me, since he doesn't want to worry me. I worry anyway. I'm worried and scared to death. When his friends or his brother calls he doesn't tell them how he really feels and I can see it in his face how he really feels. He said the other day that all he wanted was 7 more years. He has been fighting for his life for two years now. He has taken every treatment, pain and bump in the road with grace and dignity, more than I ever could. His courage is just remarkable. I live with my father along with my 2-1/2 year old daughter who is the light of his life. I know how badly he wants to see her grow up, at least enough so she will have memories of him. I think that is where he came up with the 7 year number. That is what breaks my heart more than anything. She can't lose her Grandpa, the most gentle caring, best man in the world and her biggest fan and I can't lose my Dad. He is only 65 years old. But all of this good news and then followed by bad news is taking it's toll on him. He can't even rejoice in the good news anymore, wondering what it too follow, it's a darn shame! I think my father believes that if he now has bone mets that the other tumors are probably growing too. But it's possible that they aren't, isn't it? If I tell him that, he just thinks I am trying to pacify him. Please, any words of hope, encouragement are greatly appreciated. I am going to print out the responses and let him read them. He really needs hope and encouragement right now more than anything and he needs it from someone other than me. I apologize for the lenghthy post. Thank you all so much and god bless.

Hello everyone. I have posted here before, but mostly just lurk and pray and laugh and cry along with everyone. My father has been battling NSCLC Stage IV since being diagnosed in December 2001. They say it is BAC. Surgery was never an option, although I begged for it because it started out with only 3 small nodules, 2 in one lung and 1 in the other. I couldn't find a surgeon to do it. He has been taking chemotherapy ever since diagnosis with a small break (about 10 weeks) on Iressa. Each time he tried a new chemo drug he had initial shrinkage and stablization and then progression, so it was on to the next. His latest chemo has been Cisplatin and CPT-11, he started that in July after they discovered liver mets. His last scan at the end of November showed shrinkage in all lung nodules (there are many) and 50% shrinkage in the liver! We were thrilled. He continued with the weekly Cisplatin-CPT-11, even though it knocked the heck out of him, but he figured it was working. I also had started him on TM therapy at the end of September. Lately his red blood counts have been taking a beating and he has had 2 transfusions so far along with Procrit. He had been having back pain on and off for a while, but finally told his onc. as the pain was not letting up as much and last week we discovered he has mets to his hips or spine. That is what was causing the pain. He feels fine otherwise, except for this pain in his back. He can't seem to get a break. When one thing goes away, something else pops up. He has now just received his first 2 of 10 radiation treatments. He is in alot of pain in his back and my heart breaks for him. He is so disgusted, depressed and just about ready to give up. I don't know what to say to him anymore, he needs to hear from people who have been there and done that. He doesn't really talk to anyone about what he is feeling or what is happening, especially me, since he doesn't want to worry me. I worry anyway. I'm worried and scared to death. When his friends or his brother calls he doesn't tell them how he really feels and I can see it in his face how he really feels. He said the other day that all he wanted was 7 more years. He has been fighting for his life for two years now. He has taken every treatment, pain and bump in the road with grace and dignity, more than I ever could. His courage is just remarkable. I live with my father along with my 2-1/2 year old daughter who is the light of his life. I know how badly he wants to see her grow up, at least enough so she will have memories of him. I think that is where he came up with the 7 year number. That is what breaks my heart more than anything. She can't lose her Grandpa, the most gentle caring, best man in the world and her biggest fan and I can't lose my Dad. He is only 65 years old. But all of this good news and then followed by bad news is taking it's toll on him. He can't even rejoice in the good news anymore, wondering what it too follow, it's a darn shame! I think my father believes that if he now has bone mets that the other tumors are probably growing too. But it's possible that they aren't, isn't it? If I tell him that, he just thinks I am trying to pacify him. Please, any words of hope, encouragement are greatly appreciated. I am going to print out the responses and let him read them. He really needs hope and encouragement right now more than anything and he needs it from someone other than me. I apologize for the lenghthy post. Thank you all so much and god bless.

Don't forget: WHERE THERE IS LIFE, THERE IS HOPE! My personal favorite.

I am so sorry to hear that your father is still in the hospital and all that he has had to go through. That seems awful that he had to have his entire lung removed due to something that seems to be the surgeons fault. Why was there a big gaping hole in the sutures?? My goodness. I wish him a speedy recovery and all the best. In your signature you mention liver mets. My dad has liver mets also. What treatment are they using for those on your father? I thought that if the cancer has metastases it is considered Stage IV.