Adrian

her reaction to chemo 11 years ago is probably not a fair predictor of how she would handle the side effects now. though by no means perfect, oncs have become much better at using pre-meds to offset the typical chemo reactions.

my dad had a persistent and deep dry cough: tried cherratusin, and tessalon pearls, had an inhaler. none did the trick. last week he went to a pulmonologist who thought it might be an infection. he's on an antibiotic now, but the doc also gave him hydrocodone. The last week his cough has finally started to subside quite a bit---though it is still present. Other things being equal, I;d like to think that the antibiotics were the meds making the difference but we cant be sure. for certain, however, you want to go up the chain of medicine. So you should consult with your doctor, but you might also try over the counter robitussin first to see if that helps.

Nice! I was thinking that as a strong possibility.

So I've been thinking a lot about trying to start a drive at my firm to raise money for lung cancer research. Anybody have a good sense of where that money would be best placed (what organization is deserving and where a few grand would be a useful contribution)?

my dad has stage IV nsclc with brain mets. He just finished WBR yesterday. He battled a fair amount of nausea on several days and threw up a few times.

You are handling it as well as can be expected. How can you not freak out at first? When I first found out about my dad, I felt like I was dying--rolling around on the ground in pain. But then you realize you're not dead, and neither is he, and its time to start figuring out how you are going to help in the critical effort to take back precious (lung) territory. Seriously, IIIa is not the worst place to start---I'll trade you! BTw, as pointed out below, are you sure its small cell and not non-small cell? As for my sister, I'll let her answer for herself as she will doubtless have something useful to add.

Aubree, firstly, I am sorry you have to be here, but welcome. My sister and you have a very similar situation as my father was very recently diagnosed with stage IV NSCLC with brain mets. Leslie (who posts here too) lives in DC and everyone else is in LA. Our family has always been an uncommonly close and loving one anchored by my gentle and thoughtful father. I know its been incredibly hard for her to be away from dad. When our old lives officially -- and out of the blue -- ended 1.5 months ago (seems like much longer) as a family we had to figure out how we were going to keep living in the face of our worst nightmare. Like you, even now I am still coming to terms with the (un)reality of it all. At the same time, I am also trying to come to terms with the reality that this is the most real and powerful thing I (and my family) have ever dealt with. (until the day of dad's diagnosis I'd never had my legs cut out from under me in pain and sadness) When the first or second wave of shock subsided, our family together had many conversations about how we were going to move forward. We concluded that even though everything is uncertain, we have to live (and adopt the mentality) that we are a family whose husband/father is and will continue to be a survivor. On the one hand, that has required us to be as informed as possible---but on the other, it has been to make sure that to the extent possible we embrace the day-by-day approach. No jumping ahead to what the outcome "has to be" and no more jumping back to "I can't believe this is happening." We know there will be good days (hopefully lots of them) and bad days: and there will be days when you are freaking out even though "nothing" has changed---and there will be days when, I expect, your siblings or mom---possibly your dad---will be doing the same. When that happens, your role will be to get them back to the place where they can move forward. Get them back to "today." There will be times to cry. Personally, I have tried to limit those to times when the circumstances, not my emotions as such dictate that its time to cry. (but certainly, a good cry from time to time feels great.) Certainly your brother and sister will be invaluable resources in ensuring that your father receives the best treatment period---which is the treatment he deserves. but that doesn't mean they (your siblings) have all the angles covered---and that doesn't mean that you are disallowed from learning and questioning what is going on with his body if that is what you feel you would like to do. And above all, it doesn't mean that your role is any less important when it comes to keeping your family emotionally strong. Finally, I should add, that in many ways it is critical to keep being the family that you've always been. My family has been one that has always loved to laugh and joke---my dad especially. In fact, the last thing he wants is for us to "mourn" him while he is in good health (cancer aside). So we laugh and joke about anything, even (perhaps especially)cancer. Be strong. Please keep us posted on how he and your family are doing. What's your dad's staging?

Welcome Tova, you'll find hope, comfort and empathetic ears here. your mom sounds like a brave woman, and a good person. Keep us posted.

We are a family that is open and has never had anything to hide. In fact, because of that, a lot of our friends and family expect from us a certain willingness to really share where we are. Of course, this situation is different: the mere discussion of where we are, on a day to day level can actually upset the balance of "where we are." For one thing, good people say the wrong things (by our lights), all the time. They are either negative (Oh my god, CANCER, He's a goner!), too positive (He'll be FINE), don't care enough (Wow, that's too bad, see ya later), or too emotional (Why are you sobbing, it's not YOUR dad). Some people in the spiriti of openness dig too deep (How will you go on?) Obviously, the support of friends is invaluable, but striking the right note is very complex, indeed. Secondly, my sister, mom and I (honestly, a bit harder to say with dad) are really in atunement with how we want to approach this going forward. When I tell others, it can feel like relaying a conclusion to a concerned bystander. They are there, but not in the same way.

Just wanted to let you all know that the second week of WBR went as well as could be hoped. Leslie came into town on Wednesday and stayed through yesterday. Dad was very tired all week, but managed to teach his weekly seminar. We hung out a fair amount and his appetite was pretty good. He threw up once on Thursday or Friday, and has had several bouts of mild nausea. Tomorrow he is meeting for the first time with a pulmonologist to get his opinion on my dad's persistent dry cough. So far, we've tried Robitussin, Tessalon pearls and Cherrratusin. nothing has really worked. That said, the cough has seemed to get milder over the last few days on its own accord. overall, going into session 10-15 of WBR we're ready to be done with it so that we can turn to chemo+avastin to address the primary "issue." On a side note, on Friday a distant cousin who lives abroad came to town to be with dad for a while. I have quickly learned that at this early stage in our new normal, people even with the best intentions can upset the delicate balance that is living with cancer. Before I knew it, my sister was calling me sounding extremely bummed out--- Finally, just wanted to throw in, a thank you to all for your continuing care and concern. You are truly an extended support network that has been essential to me and family (re)gaining balance and strength.

Thanks for your comments all. all things told, last week was a pretty good first week of WBR for dad. Fatigue and light nausea were the chief complaints. He didn't end up exercising but he taught his weekly seminar, worked at his office on several afternoons and actually gained a few pounds thanks to his instant taking to Ensure plus. Though, the new normal dynamic is certainly in play for us---track down some of my prior posts if you dont believe me!--my dad seems to be proceeding to the extent possible as if he wasn't sick. And to the extent possible, so are we. (This certainly does not mean, however, that we aren't scared and always trying to figure out what he needs to be doing and when he should be doing it) This disease is the "great" interruptor, and every day that you can live your life more or less on your terms is a good one. Here's to hoping the second week goes as well.

thanks welthy---his cough is unproductive---no phlegm. We're looking into the Cherratusin. Thanks.

Hi team--- has anybody used any medicine that has been helpful for the cough? The doctor first recommended over the counter robitussin. Didnt do much. The Tesalon Pearls, which relaxed the cough a little. Any medicines---or anything else for that matter---that has helped you or your loved one with the cough? Its deep, but dry and unproductive. Thanks much Adrian

I agree that the teaching means so much to him. fortunately we live so close to the university getting him there is a snap. the thing about my dad is that he has a professor's disposition. he is sweet and loves to laugh, but he is reflective, subdued and I think he would agree---a bit lazy. Not to mention all his life he has loved to please other people---as a sociologist, he is incredibly sensitive to the thoughts and sensibilities of others. He's not really the Lance Armstrong fighter type. That said, I believe he has an incredible inner drive, but he is still getting used to the idea that it needs to be activated---that this is his next and most important project

Dad seems to be doing pretty well through his fourth WBR session---though he is certainly feeling tired. He is napping every day. My mom is going to try and get him to go for a jog or a walk. With respect to exercise and eating we're trying to get him to adopt the philosophy: I won't do more than I feel up to, but I' will do what I believe I can. One good thing is that he is loving the Ensure Plus drinks that I bought him---so if he's sucking those down in addition to reasonable meals hopefully he'll start putting back some of the 8 pounds he has recently shed.

kaneo, what you write is compelling and I wholly agree that each has his/her own role with respect to supporting a loved one through this---(afterall there can only be one Hamlet in the play)... But while each has their own role---my view is that between each person, to the extent possible, attunement between people within the context of their unique roles is the goal. As to the last bit about "if he makes the ultimate decision to stop fighting. . .," while I agree that the ultimate goal is not survival but unshakable support of your loved one's decisions, I think you're getting ahead of where DLG ---and her father---are right now. The underlying thought however, is certainly true and meaningful.

quick update: dad is three days into WBR today. He woke up with a little nausea but otherwise reported that he was feeling OK. As I write, he is teaching a class. oh yes, his dry cough has remained and robitussin wasnt doing much. Yesterday the onc. prescribed "tessalon pearls." Dad took his first dose and mom noted that this has seemed to help already. My mom also noted that Dad has lost almost ten pounds since a month ago. Beyond reminding dad that he doesnt have the luxury to skip meals, my mom has promised to redouble her efforts to keep him on a (high quality) high calorie diet. What do you all think about the benfits of having him see a nutritionist who specializes in cancer diets? I think his hospital (UCLA) offers the service. Anyhow, beyond that, nothing new to report except that it is confirmed that he will be accepted for this medical trial. If any of you are interested in seeing a copy of the trial description, PM me.

DLG-- family situation sounds like an improvement from before. Cleary the more open and honest the communication w/in your support network the better. with respect to your mom's treating dad "like a baby", I think what she is doing is understandable but I think she can be dissuaded. Here's my thought: I think she is confusing what is good for him with what makes her feel better. In reality, good for him is keeping him in the land of the living--that is, active to every extent reasonably possible. My guess is, like everyone else in this situation, mom is battling feelings of helplessness---she doesn't know how she can help this person who she loves. So she resorts to doing his dishes etc.---keeping him "comfortable." Her reluctance to stop is, in my opinion, probably because she is scared that if she can't do this for him, then she can do nothing for him at all. Moreover, as everyone ion this situation knows, its moments of activity where one can get away from the anxiety and restless thoughts. The resolution is persuading her that her instinct to nurture is legitimate but is being misexpressed. Suggest to her that the way she can be most helpful to dad is to do everything she can to enable him to remain active and engaged. How can it help dad to make him watch the world go on without his involvement? Tiredmom- thank you for the compliment---coming from someone who is experienced, it means a lot because we are playing it by ear. Dad is now three days into WBR---hasn't even started chemo/avastin yet so the waiting game is truly frustrating. as to your anxieties---They are totally understandable as when she's getting chemo, you're on offense---taking back territory---taking control. Going back to waiting reminds you that this process has so many different modes. Getting treatment sounds right to us---because all we want to do is kick this things *ss---but as we all know it is just more subtle than that. Sometimes its more like casting a vote in a hotly contested election and waitng for the results to come in.

dlg, it could well be the treatment, and it probably is temporary. but if he is off balance, if even temporary, then he shouldnt drive for that period. If and when he starts talking like he wants to drive again, it'll be time to check what his balance situation is then. I am certainly not trying to diminsh your feelings because obviously it sucks to be told that dad has to give up something because of his treatment---my dad starts wbr on Monday and I too will feel so very bad if and when any type of side effect kick in. besides the one time when i was a kid and my dads back went out, I've never seen my father in any state except one of strength and stability. Never even seen him tipsy! so, this is going to be hard.

Steph my best hopes are with you. Please keep up your spirits. Even worst case scenario, chemo is still a real option---20% effective is obviously not optimal but it is a real something. Not to mention, by your description, it sounds like she had a pretty good response to chemo in the first instance---you need to believe that her response would again be a good one. In the last month since my dad was out of the blue dx'd with stage 4 nsclc with brain mets I've had many many of the worst days of my life and April was easily the worst month of my life closely followed by May. Since then if I want to scare myself or panic, I think things like "this is a living nightmare, I can't believe this is happening." No matter what happens, I try now not to let my mind wander into that state---and believe me, sometimes its hard. So if you need to go there, go there. But resist it if you can. Stay strong.

thanks for the concern Susan. The fire was never directly threatening my house---but was close enough that we were practically smoked out of our house. I certainly agree that the waiting and continual timeline adjustments have been one of the harder things for me to deal with since this started.

i suspect that he will still be eligible for the trial because the study is specifically for the trial of an avastin like medicine in people with nsclc and brain mets. his spirits are still up. he is strong, eating well and you simply wouldnt know he was sick if you didnt know he was sick. And its probably still better that they figured this out now rather than later. moreover, they did srs on the 3 formed noodules---so he is better off today than he was yesterday. however, i'd be lying if i said that today wasnt one that forced my family and I to gulp a bit. man, ive had quite a few last couple days, yesterday my house was getting covered in ash and smoke from these LA fires just up the street. the flames were incredible.

Bad news. Dad just went in to get srs on 3 brain nodules. They found several more forming nodules and they have decided that he will need WBR in addition to todays treatment. I think the worst part is that this will delay his beginning chemo about 3 weeks. Trying to be strong but keep getting sucker punched.

Ok. I will be terse because I'm on blackberry. you said it "sounded" like your mom is upset with you and that your older sister won't talk to you. I think a first step with both your mom and sibling is finding out (by asking them) what emotions they're dealing with---i think you are right to desire a united family front...and right now that's missing. And maybe simply expressing that is the way to begin talking to your mom and sister. There is a chance that they won't (or somehow can't) buy in---but like everything else in our new lives, we can figure that out if and when it happens.

Hi dlg, a few things, as you know, my dad is in pretty much the exact same situation (very recent out of the blue discovery of Stage IV adeno with brain mets). The only good news we've gotten since this started a month ago was that late last week, the neuro onc. told us he was almost certain that the 3 brain lesions could be eliminated and that he could still take Avastin with his chemo. Besides that, nothing but bad news. The attitude you've assumed is, I think, spot on. After we got over the initial shock and drama, our family's approach became one of taking one day at a time (the ultimate cliche, but in this case, true). (In my limited experience,) there are two hope-reducing, panic inducing modes of thought: jumping ahead to what the results of all of this could be and jumping back to the "I wish this wasn't happening" fantasy. In my family's case, I have done what I can to focus on where we are now, and making sure we know what the next step will be---but that's all. When you do that, you are able to look at even a little good news as a victory because you can "honestly" say that your situation today is better than it was yesterday. And you can live with the reality that you need lots more of those little victories. If you're looking towards the "final act," good news is only a temporary stage prior to the "inevitable" and if you are in the "wish he wasn't sick" place then good news is still in the context of the worst situation you've ever had in your life. It's certainly difficult to get everyone in your family on the same page, but for what its worth, you might want to try telling your mom etc. something to the affect: "we need to start acting like a family who's father/husband is a survivor of serious lung cancer. We're not preemptively mourning a dying person, we are supporting a fighter." And if you want to pour it on rhetorically you can throw in for good measure, ["By god, if he wants to cut the grass, he will!!"] best, Adrian