Adrian

I am so deeply sorry. Sitting at work door closed, crying for you and your loss. From your description, which made my heart ache, and from your prior posts, I was always sturck by Bill's tremendous strength and attitude. That man was NEVER NEVER beaten by the disease, and that is something you can remember for the rest of your life. All people are flawed, but I believe his approach and attitude---up to these most tragic final days---are a model which must be respected and admired. My condolences.

If dad says "I'm going for 70" you say, "We'll get to 70, and then we'll turn our sights to 72."

I understand that. You might consider developing a rapport with the onc. via email, and when the time is right suggest he never discuss prognosis and "max dates" again as your dad needs positive reinforcement and that sort of medical fortune telling while perhaps impressive is the last thing a fighter needs to hear. Its ok if I know my car warranty expires at 150,000 miles no matter how good its running now or even then. Not so helpful when you're talking about my dad. Our onc. is a nice guy, but it hasnt been until recently that he has started to to take an approach that has encouraged my dad. He is getting invested in him. But he didn't get there by himself though.--If you're sticking with this guy, tact is the key, but you need to get this guy to invest in your dad's long term cancer management.

Not to take issue with your sig line chronology, Sylvia, but are you sure your doc said "36 months max?" Does that mean that if your dad is still ticking at 36 months the doc is going to put a pillow over his face? It is incomprehensible to me that a doctor could say that from a medically confident standpoint. Especially given the fact that 36 months=3 years=an incredible amount of time for new therapies to come online. Mind you, this time 3 years ago, Avastin and Tarceva were both FIRST being introduced. http://www.roche.com/home/science/sci_mile.htm It's one thing if a doc says, "He will die this week or next." When the doc says that, barring miracles, its time to prepare. 36 months max? Screw that. Sorry for the rant, just caught my eye.

Wow, I do believe Dr. Jerkoff would have needed a stethascope to find his stethascope had he said that to me. Not that it was SO offensive, but methinks he has watched too much ER. Dramatic delivery is npt a virtue, compassion is.

update: Its four days post his 2nd gemzar/carbo/avastin cycle. He's taking 2 mg. of decadron a day. His energy levels remain solid and his appetite up. Really seems like the growing distance from WBR + being off ativan + being on decadron have made a major differnce as he had an active weekend (within throwing distance of pre-dx levels). And with returned energy levels and increased appetite he has also become a better more proactive cancer patient. He is now keeping a food and drink log. Assuming his energy is still up this evening, I'm going to put him on a very light (<10 lbs)weightlifting regimen to see if we can't get some muscle back on his frame. I'd like to keep riding this wave for a while if you don't mind.

fascinating thread...To sort of elaborate on the very apt rollercoaster analogy: when you're at the bottom, you have the comfort of knowing that you can't get lower. With being lifted returns the possibility of being dropped again. Don't feel guilty for having trouble *enjoying* good news. Its a unique byproduct of this experience that is neither bad nor good, it just is.

we know nothing about my dads blood counts at the moment. Perhaps that's because he has had only one cycle of Carbo/Gem---though they might have done some bloodwork in between the carbo and gemzar infusions so there might be blood data that I don't know about. I guess this Thrusday we'll be finding out about something from his blood counts. Thnaks for your valuable input Welthy.

Very interesting Ned, This is obviously a new bit of info that needs to be factored in. Ned, I have two hopes that have been with me all day 1. that dad's fatigue diminishes and 2. that your scan results come back excellent tomorrow. I want them both and I refuse to compromise! Best, Adrian

hah, my sister hijacked my account. zt, "the down and outs" are very close to what he has. Can you tell us what anti-depressant he was using, the dose and the side effects if any? Thanks, Adrian

Hi all-- My dad has had his first round of carboplatin/gemzar and it has just knocked him out. He is so fatigued, has zero appetite, and his spirits are so low. I am in LA right now visiting him--and it is just making me so sad to see this. Eight weeks ago, my dad was running, swimming, teaching class...and today, it wipes him out to walk to the end of the driveway. I'm not sure if this is all a result of chemo, the combination of chemo and WBR, depression, or all of the above. My dad's onc. has suggested lowering the chemo dosage. This makes me very, very nervous...given my dad's cancer--Stage IV with brain mets.--I feel like we need to hit this cancer with everything we've got... Has anyone had any experience with lowering the strenght of the chemo? Any thoughts on how to make a decision like this? Finally, has anyone had experience with anti-depressants during chemo? My dad says that he is having very dark thoughts lately...and perhaps he needs something to take the edge off... Finally, my god, do I hate this illness...I hate it. I am so angry and so sad...it just takes my breath away that this has happened to my family. Thanks in advance for your thoughts. Leslie

from one recently admitted bar member to another "Congrats!"

Get him that rest, fatten him up and then they'll start on the second line chemo after the WBR. This rollercoaster ride sure has ups and downs. You are due for an up, and I believe there's one just out of view. Do your best to roll with it and keep you and your dear husbands' spirits up. My very best thoughts and expectations to you and Harry.

Its like a verbal tic the non-lung cancer world has when they hear "lung cancer"---I find it irritating, but checking my own gut, I have the sense that I might "instinctively" have asked the same, so I don't begrudge people when they do it. It's not worth being defensive about. I've learned that many people with good, even great intentions ask the wrong questions, say the wrong things or otherwise hit the wrong notes in dealing with my dad, my sister and my mom. For instance, I don't particularly like when people say to my dad that they are praying for him. And dont get me started on people saying "lets pray for a miracle." I'm like, "no, let's hope that his cancer responds to the chemo and avastin." That said, my girlfriend's mom who lives in Poland and is a devout Catholic travelled many hours to visit a famous church to pray for my dad, and I was deeply touched by the gesture. I suppose what I most dislike about the tic is that it reminds me that the reason that lung cancer research is so underfunded when compared to breast cancer is that it is entrenched in the collective (mis)understanding that lung cancer is a disease that smokers by their actions chose to get.

Update: Carbo 1.5 weeks ago, Gemzar last thursday. mild nausea, debilitating fatigue/weakness. No appettite. (and that's me, dad is another story----ok bad "joke") Wisdom/advice appreciated, especially in regards to combatting/dealing with fatigue. the fatigue may still well be a result of the WBR which was completed less than a month ago.

it has become clear that he is drinking nowhere near the amount of fluid he should be. We are now going to redouble our efforts to get him to focus on drinking as much liquid as he can handle. His recalcitrance with respect to pushing himself to eat and drink and otherwise take initiative can be so disheartening---but it is understandable. The water may really really help though as I'm starting to think a large part of his nausea and lack of appetite may be atributable to dehydration. I told dad that if he doesnt start following orders I am going to take leave from work to be with him. For a variety of reasons, I know thats the last thing he wants!

raney, has the advair given you any relief yet?

My dad just finished WBR. He hasn't had any real SOB problems but he has had a persistent dry cough that lasted and maybe got a bit worse during WBR. So far, our Dr. and pulmologist have not been able to pinpoint the cause (i.e. chest infection? acid reflux? tumor related?) of the cough nor prescribe medicine that has supressed or calmed it down (Robitussin, Cherratussin, Hydrocodone, antibiotic and now an acide reflux pill).

Took almost two months from the date of scary X-rays, but dad is at the oncologist as I write to begin his chemo (only carboplatin today, gemzar and avastin to follow). They did full scans earlier this week and the good news is that sans treatment (save for the WBR) there have been no further mets or appreciable changes in the primary. I suppose the only better news there could have been under the (terrible) circs was that he has sarcoids (go sarcoid theory go!). That said, dad's dry cough is truly terrible and persistent and nothing to date has helped significantly (even the hard stuff such as hydrocodone gives minor relief at best). I understand that the cough is probably tumor related and to that extent, tumor response to the chemo may itself reduce his cough---but I'm just surprised that the stuff theyve given him so far has not itself at least suppressed the cough. Anyhow, today is D-day on the primary. Scary, but necessary. Best to all, thank you for your continuing support.

welcome. that is great news! My understanding from Dr. West is that until recently it was thought that chemo did nothing to combat brain mets. More recently medical thought is evolving as sometimes brain mets do respond to chemo. Clearly, your mom is a terrific example of that.

VegasMom, as someone in the same boat, believe me I am so sorry and I empathize completely. My dad was first diagnosed IIIA/B before they found the brain mets. And then right before they did targetted radiation on the few brain mets they realized that there were more than they thought and ended up having to do WBR which delayed his chemo a month. (he's FINALLY starting on Thursday) You get those bad breaks and they are as hard to deal with as the original diagnosis itself. You are just getting your bearings and then boom new info that makes you yearn for the earlier state of affairs---which you originally and reasonably thought was nightmarishly terrible in and of itself---And now you have to wish for it! How very very frustrating. That said, many people here are ticking right along in the face of stage IV. While my family is still very new to the process, we take hope and strength from the many people here and elsewhere who are managing this disease. Just so you know, it is the fact of metastasis that makes your mom stage IV, not some additional bad news on top of metastasis. Similarly, from my understanding, the lymph nodes will be invovled in almost all metastasis. btw, I have found it somewhat calming on bad news days to take long showers. Always end up mixing water and tears but come out feeling a little better.

fyi, my dad next week begins a clinical trial called "Passport" specifically focusing on the use of avastin as first or second line treatment in stage IV NSCLC patients with treated brain metastasis. Its a Phase II trial.

There are a lot of things I'd have to know first. Most importantly Id need to know a lot of details re: the clinical trial (what type of cancer fighting drug is it, what testing phase is it in? etc.) Other things being equal, I'd go Option 3! Im trying to figure out why Avastin isnt part of the option 3 regimen. I would certainly want that thrown into the mix if possible. fyi, my dad just finished 15 treatments of whole brain radiation and next week will begin a clinical trial where he will receive carboplatin/gemzar and avastin. Its a clinical trial because until recently they tended not to give avastin to people with brain mets due to the risk of brain bleeding.

am I computer-ly challenged or something? It appears to register you need to be an AE cardholder as registering requires that you enter your AE account number...

I would expect that now that the biopsy is confirmed that she will get another round of PET/CT scans and probably an MRI so they get a better idea as to whether the cancer is anywhere else. However, it certainly is a good thing that the lymph node tissue they biopsied came out negative. Please keep us posted.