CancerCompass message board discussion started by Farmer on 12/1/2004 http://www.cancercompass.com/message-board/message/all,1409,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Wanted to know if any smokers, metastatic nsclc are taking either of these drugs and have they been effective? I was told either option is only effective in non-smokers.(by the physician). Have already completed carboplatin taxol trial study...well, not completed...after 1st two cycles improvement, after 2nd two...increase of cancer and removed from study. Any responses greatly appreciated. Farmer Wed, 01 Dec 2004 00:00:00 GMT Hi Kellie, My husband has nsclc which has spread to his hip and spine. They now have him on Tarceva which he has been on for just 2 weeks so I can't tell you if it's working. He has a cat scan the 28th to see if it's working so I'll be able to tell you more then. The only side effect he's had so far is a rash on his nose and loose bowels which hasn't caused him a problem. He used to be a heavy smoker but quit about 20 years ago. Take care. Diane1 Mon, 10 Jan 2005 00:00:00 GMT Hi, My father is just starting Terceva treatment for NSCLC and he is just taking the pill once a day. He was diagnosed about 1 month ago and it seems to have stayed in his lungs? I am not sure, and I don't know if he is sure either. I will let you know with updates how it's working, but I'd like to stay in touch with both of you if you don't mind. I would like it if we could all update eachother with info. My dad battled throat cancer 9 years ago and won. He was a smoker and quit 9 years ago when his esophagis was found to contain cancer. He had surgery and radiation. He now talks with an electro-larynx and breaths through a new hole in his throat. Everything else is pretty much the same, just no swimming, and less talking on the phone. This was a huge shock when we (my family and I) discovered he has advanced stages of NSCLC. We are hoping for the best with this medication. I will keep your families in my mind as well. - Tom Tomlgj Sun, 16 Jan 2005 00:00:00 GMT Hi. I am a survivor. Non small cell, metastised to ribs, spine. No surgery. Been through radiation, chemo with carbo platin, taxol etc. I have been on Iressa since clinical trials with remarkable results. Cat scans, Mris, PET scans, Broncoscopy all reveal scar tissue but no active. Originally diagnosed in 2002. Feel great, putting on weight, work full time-fatigue easy (combination of age etc.) Iressa does not work for everyone-only those that are predisposed with a certain gene factor. My dosage has been cut to 125mg (1/2 pill) daily. The only side effect is dry skin (itching etc in my upper back area) but moisturizers control that. My strongest advice to all concerned is to try it. Whatever works-try it. For a doctor to say it won't work is a shotgun approach. How could they know unless a gene study has been made? If one won't prescribe go to one that will and understands the history and science of Iressa. I continue to smoke also. My doctors cringe a little but one says "the damage has been done" the other "it would probably be more detremental to quit at this stage of your life". I was exposed to Agent Orange in Vietnam and I and the VA think that was the cause of the cancer. sincerely, RB Scott Richard b Mon, 31 Jan 2005 00:00:00 GMT Hi Richard, I think I may have responded to one of your messages earlier in the week but I can't remember so do forgive me. Your message has filled me with positivity, something we have all been struggling to find since my father was diagnosed with t4 nsclc with metastases about six weeks ago. Are you able to tell me where you are being treated and perhaps the name of your doctor? I am trying to speak to as many people as possible. Many thanks and good luck. Emily Emily Thu, 03 Feb 2005 00:00:00 GMT Hi Diane. My mom has stage IV lung cancer with involvment to her bones too. Recently, she has excruciating pain in her hips at night. Did your husband have a lot of pain too? Any tips for pain management? How was Tarceva - I have been reading up on it. Thank you. Chrissy Chrissy Sun, 20 Feb 2005 00:00:00 GMT Hi Chrissy, My husband had radiation treatments for his spine and hip because of so much pain. The radiation helped but he is also on pain medication every day now(oxyicotin and celebrex). He has his second cat scan to see if the tarceva is still working on the 3rd of March. My e-mail address is dianemcgaha@cox.net if you'd like more information. Hope your mom does better. We'll keep her in our prayers. Diane Diane1 Sun, 20 Feb 2005 00:00:00 GMT I started the original posting and want to clarify...my Dad had nsclc...mets to liver and hip. He was only on the tarceva for 2 weeks and creatinine spiked to 2.8, BUN 55, all other levels including amonia(30) were within the normal range. Genentec claims no involvement as far as creatine/BUN levels with Tarceva use. I don't know, just posting as a caution. I did much research over the last 5 months and if we could possibly start again, at the beginning, before feeling compelled into making a hasty decision and going on what was "available in this area", and of course, it was the best (because that is what was available here) I personally would have seen to it that we went out East and sought a second opinion, from another cancer center. I will gladly pass on any information that I have. We did not explore any alternative medicine...all conventional, and that would be the limit of information I have. My Dad passed on 1/25 and he was a great man. Farmer Tue, 22 Feb 2005 00:00:00 GMT My mother (52 'old) has stage IV Non Small lung cancer that has metastases spread to her brain and the lymph nodes, and she has never smoked before. When she first diagnosed, her first symptoms were water in the lungs. She had drained the fluids from both lungs. It has been found 3 big masses in the brain, had radiation to her brain. The tumor shrinked a bit. Taking Iressa since September, 2004, started to feel better. Now the water returned to the lungs again and have shortness of breath and difficulty breathing again. Then I have read the news of Iressa recently dated March 3 that the Iressa treatement is no longer effective and the FDA wants to take it away from the market soon. I heard of Tarceva and would like to get more information of what is the difference between Iressa and tarceva? What is the effect of tarceva? Are there other alternative treatments available to get rid of the water in the lungs? Kisska777 Sat, 12 Mar 2005 00:00:00 GMT I am sorry about your Mom. http://www.inpharm.com/External/InpH/1,2580,1-3-128917-0-inp_intelligence_art-0-300453,00.html this site provides some good information about your question regarding Tarceva vs. Iressa. Genentechs website has the list of side effects of Tarceva...I would also suggest you read my previous post, only sharing our personal experience. Please let me know if I can help in any way with information. Farmer Sun, 20 Mar 2005 00:00:00 GMT Hey everyone, I urge you to read everything here though it is lengthy it may help you find what you need answers for. I answer such question's as: 1) what medicine and help he is receiving for treating pain, cancer, etc. 2) the bad that has occurred recently (related to Tarceva) 3) the good news (also related to Tarceva) 4) ...and more -- Background: My father again has NSCLC in his lung (advanced stages) and was diagnosed about 3 months ago (refer to past post on this message board ( father - terceva). He got this from smoking. -- Note: It has taken me a while to get back, but of course the illness/treatment also takes a while to show results. I have good and bad news about Tarceva and my father: Bad: -- My father is unfortunately now in the hospital and off the medication (both just within this week). 9 years ago he had a laryngectomy and he now speaks with an electro-larynx and has a hole in his trachea specifically for breathing. This hole in his throat has become very dry (due POSSIBLY to the Tarceva and POSSIBLY from the dry air during this time of year). This has produced scabbing and bleeding into his lungs. He was therefore admitted to the hospital about a week ago for shortness of breath and they hooked him up to oxygen because he had low levels of O2 in his blood. -- Causes: After X-rays and CAT Scans they have determined that other POSSIBLE causes for shortness of breath and low O2 levels are: 1) pneumonia 1.5) Staph infection (around trachea he has a possible staph infection) 2) lung toxicity (due to Tarceva [this is a possible side effect discussed when reading up on Tarceva]) 3) the cancer itself producing mucus 4) and again the scabbing and bleeding from his dry trachea falling into his lungs 5) blood clots from his legs which moved to his lungs -- The ways we have dealt with low O2 levels are: 1) Suctioning his trachea, which pulls out mucus and sometimes scabs (CAUTION: THIS CAN CAUSE IRRITATION and MAY CAUSE FURTHER DAMAGE and may cause more stuff to break away from the trachea wall and fall into the lungs. We have to be very careful to be gentle and so far only nurses and doctors have done this.) 2) coughing. Simple enough, my father coughs and it comes up but he has a strong cough so others may not be able to do this. When he gets it up sometimes they follow up with suction. (they meaning nurses and doctors, not my family) 3) 2 oxygen pipes meeting at one tube placed at the stoma of his trachea (adds oxygen to lungs but sometimes doesn't fit perfectly over the stoma so it needs adjusting) 4) antibiotics if it is staph or pneumonia 5) steroids if it is lung toxicity 6) blood thinner for the clots 7) fluid (IV) for the dehydration (they however took him off the IV because of a possible fluid overload issue inside his lungs [just due to being on an IV for too long]) 8) time: if it is the clots, or pneumonia, or dryness, or whatever it will take time to heal 9) TLC (tender love and care): IMPORTANT - we have spent every day at the hospital with him to encourage him. A lot of healing can be done in the mind. PLEASE READ THIS IF NOTHING ELSE: *******Example is when he realizes something is in his trachea, he may go into a panic and just start to clap for someone to help (rather than buzz for a nurse or call for help [he doesn't have a voice remember]) - what we do is calm him down, tell him to relax and breathe, to lower his heart rate, and to help him not hyperventilate. This allows him and everyone else to think clearly, buying him time and making things MUCH easier to deal with******* *******Another example is him just being down about himself may make him not want to eat, or may make him depressed - if we keep a happy mood, and encourage him to eat, or watch TV, or talk, this makes him much more calm (and you can literally see this in his vital signs [heart rate, blood pressure, etc.])********* -I once heard a story of a study that was conducted with a bunch of women with breast cancer. Half were encouraged and loved etc. while the other half didn't receive that. The half that were encouraged and loved lived on average 18months longer. I hope this study actually happened although I don't know, but otherwise I believe it would be true. This really helps, so please, help them mentally. Good: His oxygen levels were in the 60% - 70% range for a while (very low, the OK level being 92%) and they gradually rose to now 100% (only after a week and a half though.) He is doing better now but they still do not know why this happened. *again: they do think it may be due to the dryness from the tarceva, or the lung toxicity that it may produce. But the toxicity occurs in a small number of patients, so we obviously felt we wanted to try the drug. *************TARCEVA - GREAT stuff so far. Having a base scan to see the condition of his lungs and the status of the cancer growth (the day before starting the drug) There have been scans every month (I believe he has had 3 total with the base scan included). Since his base scan, ***there has been no further growth of the cancer!!!*** There has been no deterioration of the cancer either, but that is not intention of the drug.**************** -- unfortunately they have taken him off the drug (hopefully temporarily) so that whatever caused him to be admitted into the hospital can be reversed (possibly dryness, or possibly lung toxicity). My hope is that after at most a few weeks in the hospital he can again continue the drug. MEDICATIONS: 1) for pain he takes - methadone - ADVIL!!!! this works great on top of the methadone. So if on methadone he starts to feel pain he just takes Advil and it helps him a lot. 2) nutritious diet. IMPORTANT. He's lost a lot of weight so he needs to watch his diet and beef up a little bit. 3) antibacterial stuff for the possible staph/pneumonia 4) O2 for low O2 levels in blood 5) steroids for possible lung toxicity 6) bowel movers (methadone I think can cause constipation) 7) lubricants for dry skin 8) tender love and care -- I am not a doctor. Do not take matters into your own hands. Ask your doctor about things discussed above if you would like. But I may not have the EXACT facts. This is only my recollection of events in the previous months. Do NOT take my word for everything, but do feel free to question myself and others about topics above. Love and best wishes to you all. keep in touch. (feel free to correct me/respond to this post/help me) - Tom Tomlgj Mon, 21 Mar 2005 00:00:00 GMT In December 2004 my wife was diagnosed with NSCLC and she has been on Iressa for 82 days. I have seen no improvement and a new CT scan indicates that the cancer is now spreading to the lymph nodes.The latest press release of Jan 2005 stated that Iressa failed in its 3rd trial and that doctars should take their patients off Iressa. I brought this to her oncologist attention but he felt that it was worth a try as he had had some success with onother patient. She will stop taking Iressa this week. WE had much better results at the Hospital Santa Monica across the border from San Diego where they gave her small doses of Chemotherapy mixed with a small amount of sugar, As cancer is starving for sugar the small amount of chemotherapy follows the sugar that goes directly to the cancer. On June 22 I will be taking my wife back to that hospital. Good luck and may God bless you. Sam Cancer Info Wed, 08 Jun 2005 00:00:00 GMT