FALSTAFF31 Posted January 23, 2003 Share Posted January 23, 2003 Hi, I'm new to the boards. My father was diagnosed with nsclc, stage IV October 2002, with mets to brain, spine and adrenal glands. His prognosis is poor, but I am ever hopeful-miracles do happen! So far he has gone through radiation and chemo with little effect on the tumors. He responded well to chemo and radiation with little side effects except for mild weight loss, radiation esophogus and mild appetite loss. However, he hasn't had chemo or radiation since the end of November. He has recently been going through change in taste, naseau, severe weight loss, and dry skin with erruptions. He decided to sign up for the clinical trials for the drug Iressa and started the drug on 1/21/03. Has anyone else decided to try this? I am concerned about side effects and the bad hype it has been getting in Japan. Also, Dad has been having severe hip pain-to the point of tears-and the doctor cannot find a reason for it, despite testing. He was diagnosed with arthritis in his hips a few years ago and since he is skin and bones I'm worried this could be a cause for his pain. I am desperate to help him any way that I can. I have thought about accupuncture and Dad is willing to try ANYTHING to stop the pain. He is currently on 60 mg of oremorph twice a day and lortab in between with little effect. His doctor is of little help. He wants to change oncologists, but is now afraid to since starting Iressa. Quote Link to comment Share on other sites More sharing options...
Guest sissdj Posted February 6, 2003 Share Posted February 6, 2003 my dad also has nsclc...... he was diagnosed in Nov.02... I have shearched the net trying to find something, anything more we can do for Dad. I found out about the drug iressa.Told the Dr. about it. He told us he would try to get it, and never did. That was A month ago..... how did your Dr. get it for your Dad? I would love for Dad to try it. At least its A chance!!!! Please let me know! [/b] Quote Link to comment Share on other sites More sharing options...
john Posted February 6, 2003 Share Posted February 6, 2003 If you have Large cell that does not reponse to chemo. ask the doctor for immunostainings for chromogranin A and synaptophysin. Show them the above article Quote Link to comment Share on other sites More sharing options...
john Posted February 6, 2003 Share Posted February 6, 2003 Have they ruled out bone mets? In anycase, ask about Zometa or another biphosphonate Good luck Quote Link to comment Share on other sites More sharing options...
john Posted February 6, 2003 Share Posted February 6, 2003 http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract Quote Link to comment Share on other sites More sharing options...
john Posted February 6, 2003 Share Posted February 6, 2003 sissdj, What stage was he diagnosed in? Doesnt sound like you are getting very good care. John Quote Link to comment Share on other sites More sharing options...
Guest sissdj Posted February 6, 2003 Share Posted February 6, 2003 Hi sissdj, My dad got the Iressa from his doctor because he has had chemo and radiation and the tumors did not respond as they anticipated. They told him that he was a prime candidate for clinical trials and wanted him to sign up for the Iressa trial. You apply and then (he was told) it was a "draw" or lottery type choosing, but that nobody in the KC, MO area had been turned down. It took about two weeks for everything to be approved. He was mostly excited because of the side effects (or lack thereof) and that it didn't cost anything. Unfortunately, I am not able to tell you how he did, as he was only on it 5 days. He was admitted to the hospital on his 5th day of Iressa. He was in the hospital 9 days. He passed on 2/2/03. I wish that I could tell you more. If the doctor is slow in responding to your request, I urge you to find another doctor--IMMEDIATELY. My father was terribly unhappy with his oncologist, and put off finding a new one, even though we supported and encouraged a change. If the doctor is too busy to mess with something as simple as Iressa (a nurse in charge of the clinical trial actually explains, administers and keeps up with your progress unless there are complications), they are too busy to be bothered--period. Please find another doctor. An oncologist is there to help you and and should be able to immediately tell a patient if he/she qualifies for clinical trials and should do everything they can to make sure that their patient has the best of care. It sounds like this doctor is obviously overwhelmed by patient load or simply doesn't want to be bothered. Please find another doctor who cares about the outcome of his/her patients lives. These trials are the only way that drugs like Iressa can be approved. I still have hope for this drug and I hope that it will help others and allieviate the terrible side effects of chemo. Please keep me posted! I will give you any information that I can Dori Quote Link to comment Share on other sites More sharing options...
Guest dori Posted February 6, 2003 Share Posted February 6, 2003 sorry about that last posting regarding Iressa. It was from me, falstaff31, but I accidentally put sissdj in the username instead of mine! Sometimes I feel like I'm too stupid to breathe! Dori Quote Link to comment Share on other sites More sharing options...
Marlon Posted February 12, 2003 Share Posted February 12, 2003 If the doctor is too busy to mess with something as simple as Iressa (a nurse in charge of the clinical trial actually explains, administers and keeps up with your progress unless there are complications), they are too busy to be bothered--period. Please find another doctor. An oncologist is there to help you and and should be able to immediately tell a patient if he/she qualifies for clinical trials and should do everything they can to make sure that their patient has the best of care. It sounds like this doctor is obviously overwhelmed by patient load or simply doesn't want to be bothered. Please find another doctor who cares about the outcome of his/her patients lives. These trials are the only way that drugs like Iressa can be approved. I still have hope for this drug and I hope that it will help others and allieviate the terrible side effects of chemo. Please keep me posted! I will give you any information that I canDori Hi Dori, I am so very sorry to hear about your dad:( I lost my dad too, in a car accident in 1989. I know that words aren't enough to comfort you in this difficult time. You are absolutely right. To EVERYONE ON THIS BOARD: The minute you feel like your oncologist is not meeting your needs, medically or emotionally, move on! Don't bother dealing with patient relations as that will just serve to waste time, and probably infuriate said person. That's what we did to my mom's first oncologist, because he never had any time to talk to me(the primary caregiver and researcher). His patient load was too high for him to entertain any of my questions or research. I wrote patient relations a letter about our poor service there, and they basically told me my mom needs to speak up for herself more. Her new oncologist is very compassionate, and open-minded about complementary cancer therapy(his mom is a breast cancer survivor). He hugs her every time she comes in for chemo, and uses his oncologist's vocabulary very carefully. Every time we leave, its like I'm filled with more hope every day. Mom gets a vitamin infusion right before chemo, so that the side effects are not too bad. She also takes about 24 nutritional supplement pills a day, along with a new diet, weight-gain shake(NOT Ensure), and a green drink(used for detox, I guess). Now, mom is almost in remission, and guess what? When she was in the hospital last week with a fever, this f*%#in clown has the nerve to step into her room and talk to her. Now that she's better, of course. He even shook her hand and told her how good she looks and that its been a while. What a crock. It makes me wonder how many people these oncologists could have saved if they didn't treat late-stage cancer patients as expendable inconveniences. Cowards. How do they sleep at night? Quote Link to comment Share on other sites More sharing options...
orlish Posted February 18, 2003 Share Posted February 18, 2003 Hello We had a similar situation with our oncologist who was not able to get Iressa tablets even though he recomended them. I did an internet search and found a private company who sales Iressa and othe trial medications. It was expensive(about 4000$) but I hope it's worth it. Quote Link to comment Share on other sites More sharing options...
Guest Karen L Posted February 19, 2003 Share Posted February 19, 2003 We went for a 2nd opinion at Memorial Sloane Kettering before my husband started treatment. They found Iressa to be only 5% effective in males with NSCLC. They didn't recommend it for my husband. The chemo nurses yesterday said they were finding alot of side effects. Didn't go into it further. Quote Link to comment Share on other sites More sharing options...
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