yirol

Great research! Keep it coming. Seems those studies have securities built-in to them...wish the doctors here would be as specific.

We haven't gotten a straight answer from Dad's oncologist yet either, just a status quo shrug. Will have to keep pushing.... The only consolation (and it's a teeeeeeny one) is that my Dad is on 150mg rather than 100mg, and though it's my understanding that 150mg is the recommended dose, maybe his doctor factored in the acid medications somewhere? Still, my Dad is Stage IV, and Stage IV doesn't do status quo!!! Dr. West, though you didn't get an answer from Genetech yet, your follow-through has been very important and reassuring. How does one go about gathering info. from patient records you mentioned above? Are any oncologists looking at that now? My Dad's stomach acid problems are real and need to be handled, but I just can't see squandering any possible benefits of Tarceva. Anyone out there know of good ways to combat over-acidity without medication?

Thanks for pointing out the morphing of this thread, Ned. I was wondering if I missed something! Still, since Avastin and Tarceva are often taken together, I figured it didn't matter if both were addressed w/regards to PPI's. Still no meeting with the oncologist, strangely, but hopefully before the end of the day.... Today a "palliative care doctor" (ugh) came by and told us Dad was on Omeprazole Magnesium Tab 20 MG controlled release (CR) -- one dose daily -- and that it is a PPI, for stomach acidity. NEWS TO US! So, hopefully Dr. West and your own oncologist can help us sort this through. If Tarceva and/or Avastin is going to be effective, I don't want anything limiting that for anyone, and I'd like to know if there's another way to deal with the stomach acidity (in addition to avoiding Indian and Ethiopian foods!).

I really hope a talk with the oncologist tomorrow will clear this all up! So confusing.

My Dad ate (and kept down!) Ethiopian and Indian food two nights in a row! Whoohooo! He hasn't been able to handle and has had no desire for spicy foods-- yet alone any food-- for a long time now, so we are all dancing circles around his bed, completely happy. He just rolls his eyes. It's funny how big little achievements like this become...God, we'll take more of them...no climbing mountains here (at least not yet)...just one step, one small step at a time.... Thank you all for your encouragement.

Thanks, Everybody!!! SherryNeedsToLaugh, isn't it illegal for your employers to threaten you like this because of your cancer? You so don't need this pressure on top of everything else. Has anyone else here dealt with this issue? It's raining here, and I love it. Call me crazy, but I've always found the rain to be a sign of hope, growth, life, possibility. I wish all of these for everyone here. Yirol

Thanks, everybody. Thank you, thank you, thank you! --Today, my question is about the 30mg of Prevacid my Dad takes and has been taking for acid-reflux. I remember reading something about "proton pump inhibitors" (PPI) like Prevacid reducing the absorption and effectiveness of Tarceva, but Dad's oncologist didn't tell us about his and his general hospital staff poo-pooed our question about it saying "the pharmacy would've said something." Is anyone else out there taking Tarceva with an antacid? Has anyone still had success with Tarceva while also taking an antacid? The strange thing is, I know oncologists will recommend a PPI for Tarceva-induced acid...so I'm very confused. Any info would be appreciated. Virtual hug to everyone. Yirol

My Dad was recently diagnosed with NSCLC. Finally having the courage to officially post his history in my signature. Somehow this terrifies me, but your signatures have all helped me incredibly throughout this whole ordeal...and I hope my Dad's story can help others too. Thanks so much for this board. It's been my constant in all the uncertainty. Yirol ---- 2007.03.06 Dad returns home after 14 hour flight. Experiences severe SOB at airport and can't make it to get his baggage. Customs gives him first class treatment...clears him immediately...Dad is chauffered out on a stretcher to the nearest hospital. Can make his connecting flight to Toronto. 2007.03 Dad in hospital for +7 days while docs run tests. Checking first for T.B., pneumonia, blood clots. Dx is blood clots from the long flight. Given blood-thinners in addition to his usual high-blood pressure medication and acid-reflux medication. 2 weeks later, Dad starts coughing. Can't keep food down, loses appetite. 2007.04 Dad returns to Toronto. SOB. Taken to emergency room. Doctors in general hospital spend 3 weeks examining Dad. Start the same search for TB (1week) then pneumonia (2 weeks), then benign lesions (3 weeks). Growing frustration with hospital's "compartmentalization." 2007.05.01 Dad finally diagnosed. Dx NSCLC Stage 4 Adenocarcinoma with BAC features w/ evidence of bilateral pleural effusion with mediastinal and hilar lymphadenopathy. One 2.5x2.5x2.5 tumor in left lower lobe. One 2.5x2.0x2.0 "spiculated nodular opacity" in right lung. No brain mets. Possible mets to liver, bone. 2007.05.07 Begins 150mg Tarceva only. Considered to thin for traditional chemo. Appt. in 3 weeks. Wishing the cancer would take a long holiday and long weekends everytime the doctor's do. Symptom relief almost immediately. Coughing up mucous almost gone. Wheezing increasingly gone. Finally keeping food down!!! 2007.05.15 Wheezing back again. Night of throwing up food again. Dad's spirit and strength is as incredible as ever. He is teaching us all how to LIVE. Never complains, doesn't doubt, wants to talk about more than his illness.

I hope this drug works for my Dad! He's been on it alone (no chemo) for 8 days now, and had amazing symptom relief almost immediately. But yesterday, was a difficult day for him and his wheezing seemed to come back...so doctors sent him for another xray this morning to check it out. He doesn't start chemo for 2 weeks more, and I'm am just so afraid of the wait and the damn cancer taking advantage of the wait...and I wonder if we're all doing enough for him, pressing the doctors enough. They say he's too thin for chemo, but waiting isn't making him any fatter...so I really don't get that logic AT ALL. I hate, hate, hate this disease. I feel so at a loss, so lost... not at all used to being so powerless to help my Dad. When he coughs so helplessly, I imagine his cancer to be this clear gelinous beast in his chest THAT I HATE! Today is a day of worry. 8 days out of initial treatment, 15 days since dx. Bad day. Please pray for my Dad. He's pretty incredible.

Thanks RandyW, Do you know what stage this vaccine research is at? (bad sentence, i know).

Thanks, Ned. I can't say enough how key language is in this day and age...maybe because I'm the daughter of a literary giant (yep, bragging here!) ?? As with any profession, the modern medical world is full of "code speak" that veils information about finances/resources, prognosis and timetables behind words and phrases that seem more or less innocuous (and maybe at most annoying) to you and me. If we hadn't been obnoxious with our cross-examinations, we would never have uncovered the fact that our team of doctors was using "palliative" in a way that we were not using or understanding it; and that, to them, "palliative" and "aggressive" were mutually exclusive terms...not only because of philosophical approaches to "quality of life" and "end of life" issues but, more dangerously and banally, because of administrative restrictions and protocols on RESOURCES that they hadn't even begun to tell us about. And it was like squeezing this information out of a stone.....(This might be extreme, but have you ever heard of "the banality of evil?"). In normal circumstances, it's hard enough to ask questions about things that seem to you and me to be non-issues (like the choice of particular words), so I can't imagine how sick patients are supposed to see, understand or ask about the link between terms and $$$. It took 3 weeks of testing to finally get a diagnosis for my Dad and, before and after the diagnosis, we kept asking if we were "losing time" with all of the waiting and not-treating...and throughout it all, the doctors had the nerve to say, "at this point, one or two days or one or two weeks isn't going to make a difference." Which we knew immediately to mean (and have "proof" of now) that they had already quit on my Dad and written him off. Another example of language having realtime effects: My father told his nurse that he would wait until his test results for pnemonia were in before taking antibiotics (a matter of hours- because he didn't want to start and stop and then develop a resistance to an anti-biotic that he might need later, as the young intern doc suggested he might do)....but that he would take all of his other medications as usual.... and the nurse wrote in my Dad's record that he had "REFUSED" medication...so for about 14 hours, they "refused" to give him his regular meds. Watch peoples' language like a hawk when your family member is too sick to. Watch out for medical code-speak, and watch how your messages back to the staff get recorded. Don't get bogged down in it, but always err on the side of clarifying. Apologies for being long-winded. I'm passionate about language and its effects, especially when it's life-and-death. Yirol

You're welcome! After posting, I realized that it's a Dec. 2004 article and wonder about updates on this research. For instance, could Tarceva be an outcome of this research, or does Tarceva target some other aspect of a cancer cell (I think so?). Also, I am so new to all of this, but wonder if anyone knows about a theory that some lung cancer cells may be produced as a way to COMBAT carcinogens. Is it naive to think that my father's BAC is an overzealous and eventually perverse attmempt by his lungs to heal and "realign" after impossibly large quantities of smoke-related toxins? I know that the body strives to heal...so it seems logical that stem-cells are present in cancer cells as well as normal cells...and that in both cases, the body is really just trying to heal....just that we get such unfortunate outcomes with the former.... Somehow, right now I like this theory better than the theory that human bodies are just "vessels for viruses," even if both theories are false/and or naive.

just received this from a friend. http://www.boston.com/yourlife/health/d ... o_a_friend

My Dad just started on 150mg of Tarceva as first-line treatment, with no other chemo yet. (Not sure if I've seen others on these boards who've used it alone as a first line.) I have a general question about this medication. If Tarceva works then stops working, do we stop Tarceva altogether, or do we just combine it with other chemos and see if it works in combination? I'm sure this is a scientifically ignorant question, but please bear with me! Thanks, Yirol

One more practical thing, Jessopy2.... At the end of our first meeting at the Lung Clinic, the medical oncologist said that if we needed her to write any letters on our behalf to help us help my father better, she would be more than happy to do so. In about 3 days, she wrote letters to my brother's employer and my father's landlord to facilitate moves and transfers. I don't know if you could use longer breaks from work or if a temporary transfer would work for you, but try to imagine your ideal scenario for helping/being with your mother, and then brainstorm ways to make it happen. Use your oncologist too. Get letters from him/her that will buffer your "case" with employers, etc. Best wishes, Yirol

Pallative is and is not just a word. My Dad was recently diagnosed with Stage IV NSCLC and before receiving even a single line of treatment, the hospital team talked earnestly to us about palliative care and hospice options, thrusting brochures into our hands and dropping names of low-cost hospice options that serve the city's uninsured and homeless!!! Can you believe it? An intern told him he had "a 1% " chance. *%&$^#^@! NOT TRUE. Since aggressive treatment wasn't even discussed as a "palliative" option, we find that the doctor's were slanted toward death and dying, not life and living, however much time is left. We had a family meeting with the hospital team and discovered that, at least in Canada, the term "pallative care" is a resource-generated term. For example, if you agree to "palliative care" in a "palliative bed," then you are precluded from pursuing certain treatments that might be considered more aggressive...for purely financial reasons that the national health service has worked out long ago and completely independent of you. Sometimes docs use the word "palliative" to mean that you can't be cured, but sometimes they use it to mean that they aren't going to (and can't) spend certain resources on you -- that you are barred from certain tests, medications and procedures by accepting "palliation." So be very careful and clear about how people around you are using the term. It has realtime and real-life consequences. And, yes, there is hope for your mother, even after a difficult month. Get her to a lung specialist, not a general oncologist. My father was deteriorating on a daily basis, but we insisted that the fluid in his lungs be drained (docs said they couldn't see any but we told them to hell with xrays, do an ultrasound...and sure enough, they found 3/4 liters of liquid!). He also started Tarceva and after 3-4 days can finally eat and keep the food down, thank God, and is regaining his strength for aggressive chemo in 3 weeks. Tell your doctors that their gloom and doom bells are loud and clear, but you've heard enough of them. Tell them not to discuss prognosis anymore in terms of how much time your Mom has left, unless SHE asks about it. Buy your Mom a plant and tell her that it stands in the place of you when you want to but can't be with her, and that every time you are able to visit, together you will marvel at the progress of the plant and the progress of your Mom. DO NOT BE PSYCHED OUT BY THE MEDICAL WORLD. THEY KNOW ALOT, BUT THEY DON'T KNOW EVERYTHING. Hang in there. Yirol

Hello Hockeyma, Thanks so much for your response and help. My blessings to you, your family and your husband Gerald. That picture of him smiling is so wonderful, it makes me think that even with all the ugliness of cancer, and because he had someone like you in his life, he was and is the winner afterall. Life on this end is so rough. I'm watching my Dad deteriorate everyday and the politics and inertia at Saint Michael's where he is currently is absolutely maddening. We got a referral to PMH lung clinic and started a treatment program of Tarceva as a first-line treatment because the doctor said my Dad was too weak for chemo. She also recommended that the fluid in his lungs be drain through an ultra-sound guided needle. However, when we got back to Saint Michael's, the doctors and interns who rotate among floors and patients seemed to only want to discuss discharge. They said that they were "not aware" of any fluid in the lungs (yeah right!) and that even if there was fluid, they're not sure they would take that route anyway. So, we're sitting there tired, overwhelmed, confused, angry and completely bewildered by the cross-communication. It's as if no one wants to assume responsibility for my Dad as their primary patient, while simultaneously blocking others from stepping up and doing so. I just don't know what to do! I called Stoneybrook, but no answer. And I just don't think we have time to waste in the bureaucratic shuffle. This is so, so painful. My Dad's symptoms are getting worse. It's really the mucous build-up and his inability to keep food down because of it. We have an appointment in 3 weeks at PMH to see if the Tarceva is working (was initially supposed to be in 2 weeks but because of the "holiday," they made it 3 weeks...as if cancer takes a holiday). Until then, we are praying that my Dad can keep food down and rebuild his strength enough to start chemo in case the Tarceva doesn't work. But again, we are just losing too much precious time, and I'm not sure what to do to make the hospitals and doctors listen short of standing in the lobbies and screaming my head off (probably not a productive thing, huh?). Please pray for my Dad. I don't want him to suffer, and I want to know that I fought the best fight I could fight for him. He would do no less for me. Again, thanks for your wonderful response to me. It's heartwarming to see all of the sharing and communication and sincerity that exists on these boards, especially in the absence of this kind of humanity in many hospital staff. God bless, Yirol

Hi Ernie, My father was diagnosed with Stage IV NSCLC BAC on May 1. Today his oncologist said he is too week to begin chemo so instead started him on 150mg of Tarceva per day as first-line treatment. She said that if the drug is going to work for him, we will know in 2-3 weeks. My father completely believes it's going to work for him, and his attitude throughout has been exceptional...strong, positive and hopeful. Pretty incredible! I've done some research and wonder about the efficacy of Tarceva as first-line treatment in general and the efficacy of Tarceva in long-time heavy smokers. What I've ready seems to suggest that most responders are women who've never smoked. Can you help clarify any of this? Also, what if there is no improvement in the next 2-3 weeks? My father's condition worsens daily in terms of his ability to keep food down (too much mucous build-up that causes him to violently vomit clear frothy mucous). I'm worried that the non-eating will keep him unfit for traditional chemo and that he will have a heart-attack, seizure or stroke with all of the forceful coughing or that he will damage his esophagus or....???. He's already passed out once when his airways were blocked by the mucous (he has no brain mets). I can't bear the thought of watching the mucous drain the life out of him. I hate those damn cancerous cells! Do you have any advice I can pass on to my Dad? I've seen your story and read your particular therapy and, like you, we are praying every day for Dad. Please pray for us. Best wishes and prayers to you and your family on your wonderful success, spirit and sharing! You're all an inspiration! Yirol

Thank you so much Welthy! Your supportive and encouraging email means the world to me. My Dad was diagnosed on May 1, so this is all a new world to us. (In my original post, I should have said Iressa without Radiation rather than Iressa without Chemo). Do you have any idea how people have funded consultations and/or treatments in the States? We are seriously considering this option, but my Dad only has the basic Canadian health insurance plan with no supplemental private insurance. His older children are considering paying out of pocket or raising the money through some other means, but we're not sure this is even possible. Hope this isn't an ignorant question, but do any clinical trials accept patients "pro bono"? Best wishes to you and your husband. My prayers are with you! Yirol

My beautiful Dad has just been diagnosed with non-small cell Bronchoalveolar Carcinoma (BAC), stage IV, with small lesions on lower vetebrae, abdomen and perhaps liver. Tumors in both lungs. Brain scan is completely clear. Spent three weeks in hospital while doctor's checked for T.B., pnenonmia and benign lung scarring. THREE WEEKS OF WAITING AND STRANGE COMMUNICATION (We're currently at a general teaching hospital which seems to be suffering from "group think"). Day of official diagnosis, the hospital oncologist sent a young intern to my Dad's room who basically told him to "choose a pain killer and go home." However, my Dad wants to fight. We are in the Canadian national health insurance plan and feel that we're getting the run around. Very poor communication and a lot of waiting for the single oncologist that services the entire hospital to transfer my Dad to the Lung Clinic at Princess Margaret's Hospital in Toronto. Current doctor suggests starting my Dad on a round of Iressa, without chemo until he can be transferred. Time is of the essence. Should we move my Dad to a private clinic in the States, should we wait a week or more for transfer? Should we start Iressa without Chemo in the current general hospital? It all sounds a bit too random to me and feels like the doctors are stalling because they've already made the decision that my Dad should just go back to his apartment and die. We are on borrowed time here and we are doing our best to accept it. Not expecting a cure, just a fighting chance for treatment. More than anything, my Dad wants to at least get well enough to travel back home (he's from Africa) and spend the rest of his days there. This is all so sad and new for me, but I need all the information I can get to help him fight for as long as he wants to. Can anyone help? Anyone?! Anyone?!!