yirol Posted May 24, 2007 Share Posted May 24, 2007 My Dad, Stage IV NSCLC, is on 150mg Tarceva daily. Doctors say he is "too sick" for traditional chemo and that it "could kill him." They're pushing and pushing and pushing again, telling him to either go home or go downstairs to a palliative care bed. Other than the Tarceva, there seem to be no plans "up their sleeves" should Tarceva not work or stop working. My Dad walks, eats now, has had dramatic reduction in coughing and SOB. Still on oxygen (+/-98% saturation on 2-3L), but he is determined to get off of it and get "strong enough" for chemo. But the doctors DONT SEEM TO BE HELPING HIM. Not telling him what "strong enough" means. We feel stuck in a very murky world of words and forgone conclusions. Of COURSE he's not "Strong enough" for chemo yet. He laid in their hospital beds for 4 weeks WITHOUT TREATMENT and deteriorated while they danced around. PLEASE HELP. We're in Canada at PMH. Need to find a doctor who will help my Dad meet his modest goals. They are: get off of oxygen, get strong and stable enough to go home (i.e. Home home...abroad) and live out his days there. WHAT THE HECK IS "too sick" for chemo? Quote Link to comment Share on other sites More sharing options...
Connie B Posted May 24, 2007 Share Posted May 24, 2007 I'm sorry your dad is going through all of this. For us to better support you and offer some advice, could I ask you to please fill out the (MY PROFILE) part telling us what kind of LC your dad has, what stage what treatments, etc., etc. It's so hard to help others when we don't have any background information. I am guessing your dad as already had chemo? Did he have radiation too? Does he have any heart issues? What chemo's did he have? How much did he have? We really need background info to best help you. Quote Link to comment Share on other sites More sharing options...
yirol Posted May 24, 2007 Author Share Posted May 24, 2007 Where is the "My Profile" part? When I first signed up, I had the option to add a signature, but I can't find this anymore. Soooo overwhelmed. Quote Link to comment Share on other sites More sharing options...
yirol Posted May 24, 2007 Author Share Posted May 24, 2007 Got it. Quote Link to comment Share on other sites More sharing options...
Welthy Posted May 24, 2007 Share Posted May 24, 2007 Still on oxygen (+/-98% saturation on 2-3L), but he is determined to get off of it and get "strong enough" for chemo. Hi, I don't know what the term too sick for chemo means in relation to your Father. Who knows what the Doctor's are thinking when they throw these words around. What I do know is that he should carefully re-evaluate his desire to be rid of the oxygen. From the experience of my husband being on oxygen for over two years, it is an integral part of "getting stronger". I don't know what your Father's blood/ox levels are off the oxygen, but any dips in those levels rob the brain and other vital organs of essential needs. Lack of sufficient oxygen is weakening to the body and becomes a catch-22 in relation to gaining strength. No, it is not fun to be on oxygen 24/7 and it is hard for any strong man to feel so vulnerable as to "need" oxygen. Hopefully there will come a time when your Father doesn't need the oxygen, but for the time being he should consider it as one of his best friends. Due to the condition of my husband's lungs, he will be on oxygen the rest of his life. We are okay with that, although he still likes to sneak around at times without it! The nurses walking him around without it while measuring his blood/oxygen levels is all he needs to show him the error of his ways. Best of luck to your dear Father and you! Welthy Quote Link to comment Share on other sites More sharing options...
ernrol Posted May 24, 2007 Share Posted May 24, 2007 yirol, If possible I would get a second opinion. This would be easy in the states, but I don't know about Canada. If it were me I would be on my way to M. D. Anderson in Houston. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
wiesia Posted May 24, 2007 Share Posted May 24, 2007 There are scales that doctors/researchers use to determine whether patient is able to take chemo. Performance status scales. There are two of them that are in use. One is called Karnofsky scale and you can find plenty on it on the web. You will find a discussion of how to decide what number your father is and how risky it might be to give him chemo. I do not remember the name of the other scale at the moment but it should be easy to find it on the web as well. Quote Link to comment Share on other sites More sharing options...
yirol Posted May 24, 2007 Author Share Posted May 24, 2007 Thanks you guys. I can always rely on these boards. You know, when the doctors say my Dad is "too weak/sick for chemo" the only calculations I can think they're making now are: 1. He's on oxygen, afterall 2. We've seen things on the images you haven't seen, afterall 3. He's thin, afterall [he's naturally thin anyway] 4. He's old (69, afterall 5. He's Stage IV, afterall 6. He's poor, afterall 7. He only has a few months, at most a year, afterall 8. He has an obnoxious family who bugs us with all their questions, afterall 9. He smoked, afterall Otherwise, I've seen cases on these boards where people's doctors were more aggressive with "worse" cases than the doctors are willing to be with my Dad. We're getting written opinions from some of the major cancer centers in the U.S. and we are willing and able to pay OUT OF POCKET for treatment if oh-glorious Canadian health insurance won't pay, but we're losing valuable time....getting stuck in the murk of doctors who don't really map out a concrete plan but rather give us negative tidbits here and there that we have to string together. Guess this alone should alert us to the fact that we need to jump ship immediately and start emptying the coffers, right; that TODAY IS THE RAINY DAY WE'VE BEEN SAVING FOR. ARGH, guys. So hard. Ernie, We're not sure if my Dad can fly yet because his lungs are so compromised. Can Stage IV's fly? Quote Link to comment Share on other sites More sharing options...
raneyf Posted May 24, 2007 Share Posted May 24, 2007 Hi Yirol, Stage IV's can fly, but I'm not sure if your dad can fly. It is dependent on their overall health I believe. I've been flying all over the country, but my performance status and lungs are very good. Good luck to your family. Raney Quote Link to comment Share on other sites More sharing options...
Connie B Posted May 24, 2007 Share Posted May 24, 2007 I think it would be so very hard for any one of us to try and second guess what the doctor's mean when they say "To Sick for Chemo" But I do know that Chemo can be deadly. And that there are times when Chemo isn't a good idea for some patients. It may make things worse. You might want to go ask Dr. West here what he might make of this. Your health care system is SO DIFFERENT then ours. I'm not sure what to tell you to do or if you can do much of anything. I guess I agree with seeing if you can get a second opinion, but as I said, I know your health care is different and more difficult to get a second opinion. Your in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Ry Posted May 24, 2007 Share Posted May 24, 2007 Your dad just started the Tarceva so maybe it is working. From the sounds of your post you've seen a slight improvement. It can be a true miracle drug if he responds to it. In the meantime, get the weight on him and build him up a little so that if he does need to switch to IV chemo, he's ready. Quote Link to comment Share on other sites More sharing options...
wendyr Posted May 25, 2007 Share Posted May 25, 2007 Yirol, I have had some experience with OHIP and have sent you a private message. Click on My Mail at the top of the page to read. Regards.....wendyr Quote Link to comment Share on other sites More sharing options...
ernrol Posted May 25, 2007 Share Posted May 25, 2007 Yirol, I just had to correct you on a couple of things. Number 4 He’s 69 that’s young I am 70. Number 7 he may have years. I was given 18 months and that was 22 months ago. Keep fighting for the proper treatment. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
hockeyma Posted May 28, 2007 Share Posted May 28, 2007 Yirol, I don't think there is an issue about flying with stage 4 lung cancer. I believe it would be more the clotting of superior vena cava vein or if there is thrombosis of juglar vein that would be the issue - Gerald had both. So he couldn't go anywhere. We did consider driving 2-3 hours at a time to May in Rochester - but they got him on chemo quick here and it seemed to be good at the beginning. People go to Buffalo apparently which is close - there is something there. Heather Quote Link to comment Share on other sites More sharing options...
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