cat127

Hey folks. I'm at Kelly's house now. We are to be at the hospital at 11:30 tomorrow morning. Just late enough in the morning for that caffeine-withdrawal headache to set in! Thanks for the well wishes and I will be by to update tomorrow. Thank you all for all the prayers and for all the help you gave Kelly!

Boy I wish I was a patient person! Sadly I take after my father, who didn't have a patient bone in his body, while Mum had the patience of Job. Mum would always say "Patience is a virtue, catch it if you can, seldom found in woman, never found in man", when she was teasing my father. (what a great looking dog!!!)

Hey Sharon, thanks for that info! Especially about going to Ireland, as Kelly and our other sister and I plan to go to Paris and we think that Paris in Springtime sounds wonderful, and perhaps a bit like a song.

I was just about to ask you if you were Irish. In the words of an oncologist friend of mine who in fact is Irish but knows nothing about being Irish, we Irish are funny about our funerals. Our poor funeral director didn't know what to make of my family when my mum died, but he loved dealing with us! I always figure if I can laugh rather than cry, I'll take the laughing. Your family sounds similar. Not that I don't do my share of crying mind you. So sorry for your loss Andy, but it sounds like you and your family will be just fine and will soldier on as best you can! My prayers are with you all.

I find it a good rule of thumb that if there is blood where there shouldn't be, I get it checked out. Blood in the sputum definitely warrants a call to one of his doctors. Good luck!

No prob JB, thought I would comment in case anyone else had a similar sort of question. It really does take a team, doesn't it? Through all of this my sister never once has even met a pulmonologist, and her primary diagnosed her with COPD/emphysema over 4-5 yrs ago (hence my 'idiot' comment) and for the record, he is no longer her primary, now one of my childhood friends is! And yes, good luck to your friend Gail, it is nice to be able to at least help someone out a bit when they are first thrown into this insanity, we all remember how overwhelming those first few weeks were!

Seems to differ for everyone a little bit anyway. I agree with the idea that whoever ordered the CT scan will likely bring on board the next needed Dr. With Kelly, her idiot primary care (another story for another day) brought in the thoracic surgeon after the CT and he then did the media and bronch to get some tissue biopsies. Once he found the contralateral node involvement, then we went and found the oncologist. (And with lung cancer you wouldn't have a hematology oncologist, those folks specialize in blood-related cancers like leukemia. This is a solid tumor cancer and would be handled by a medical oncologist who oversees everything and handles the drug aspect of treatment, then the radiation aspect of treatment would be handled by a radiation oncologist - just to clear up the question by JB ) Now we are back with the thoracic surgeon and in the words of the medical oncologist, he is 'taking a back seat' while the surgeon does his thing. Seems that either a pulmonolgist or a thoracic surgeon would be the likely next Dr. called in for your friends case. I'm also of the school of thought that you can't get an oncologist on board too soon though.

Interesting question. And thinking about it made me realize how many things of both my parents I still have. But with time I did find that many things I couldn't part with when they died, I had no problem letting go of later. I do still wear a couple of my mum's sweaters, and everytime someone comments on them I have to tell them they were my dead mother's, which I think makes most people a bit uncomfortable. I should work on that. When Dad died Mum had to start using the bank account for the first time (Dad did all of that, so much so that he told my 2 sisters and I, never let a man do to you what I did to your mother ). I think both my sisters and I have kept a check written by Mum in those first few weeks, usually for something like $1.29 and in the memo line where it says "FOR:" she writes, $1.29. I guess no one explained to her the purpose of that line. But I still smile and cry a bit when I look at them. I wear one of her winter coats, but that first winter (she died in September) I basically left it in my car because it smelled like her and my whole car did that whole summer. But the smell eventually faded and I really miss that smell. I have lots of other stuff, but those seem to come to mind first.

Below are Dr. West's words in a post to someone on his sight. It is, in his words, "well established" that the combination will increase the chance at a cure, so why your oncologist would even question the concurrent treatment is beyond me. I'd just add to my comments that I agree with the oncologist that if someone is fit enough to pursue it, doing chemo concurrently with radiation will likely improve the cure rate compared with radiation alone. This is well established for stage III NSCLC, and I'd strongly suspect that earlier stage NSCLC will show the same trends but will have a higher cure rate than stage III disease.

Marci - it sounds to me like you had a similar experience to what we had with my sister, in that the surgeon was very up front about the risks of surgery. With us, he was upfront enough that I think he scared Kelly into thinking it was not worth the risk. It is true, surgery to the lungs is risky and the risks your surgeon quoted are the big ones. That doesn't mean it isn't a risk worth taking. What I did with my sister was take her back to the medical oncologist who was able to talk to her about the risks of surgery but also about the risks of not having her surgery. In the end, she's chosen to have it and is scheduled for the 22nd. Maybe going and talking to the medical oncologist would help you all as well. I wouldn't say the problem is that you need another surgeon, because if one were to tell you there is no risk, he would be lying. All surgery has risks and surgery into the lungs has risks, plain and simple. It just sounds like yours only talked of the risks of surgery and not the risks of no surgery, which is more typical of a surgeon and to me it is not the sign of a bad surgeon. That is where talking to Kelly's oncologist was so much help for us. Not info specific of the nodes, but maybe info that is helpful anyway, as your post sounded so much like our experience. I actually was just on the phone with my sister's oncologist and I said again something to the effect of "it scared the daylights out of her" when we talked to the surgeon. So seeing your post really hit home!

One way to look at it is that chemo is a 'whole body' or systemic treatment and radiation is a targeted one, with the beams being aimed more directly at the tumor and identified lymph nodes. especially those nodes, as it is really important to sterilize them. I know with Kelly, the surgeon would not even consider surgery for her unless the chemo/radiation sterilized the nodes. I imagine that same thought holds true with 3a as well. Now you will probably have seen the most drastic shrinking of the tumor in that first scan. Kelly's rad onc described it like this to us - it's sort of like a 500 lb man, those first 200 lbs come off easy, the last ones aren't so fast to come off. Kelly saw +60% shrinkage in the primary tumor after 2 cycles, at the end of it all the size was smaller, but not another 60%. But they were hoping that the radiation and chemo together would have completely killed the primary tumor, leaving behind only scar tissue. We weren't that fortunate but you very well may be. In that case, the size on CT may only be a bit smaller, but then on PET it shows that the cells that are there aren't active. Not sure if that helps you any or if it helps to say that there is definitely advantage to both treatment modalities. Why not attack with a tank and a machine gun!?

I remember someone asking Dr. West that over on onctalk, and I mainly remember because it was early in my sister's diagnosis and it was one of the first things to really make me laugh. The person asked him if Stage 4 NSCLC patients could fly and he responded, with the aid of an airplane they can. You could go over there and check for the thread but the gist was that in most circumstances he would encourage people to get out and travel and live. It gets more complicated with the need for oxygen, though that doesn't preclude it at all. I would add that given that LC patients are more prone to DVTs and sitting still for long periods are also related to DVTs that LC patients should be especially cognizant of moving around, pumping the blood back up from the legs (which they can do without getting out of their seats). (Not that it is a huge increased risk, just a 'better safe than sorry' sort of thing). We celebrated the end of my sister's chemo/radiation by flying to florida, Kelly and her husband for a week and our other sister and I joined them for 4 days.

My sister used to complain the day of chemo of a dull pain right about where the tumor is, only on chemo day though. When she told both rad and med oncs they both looked stumped and said they really had no idea why. I told them "me either so i've decided it is the feeling of all the chemo going directly to only the tumor and killing it". They both laughed and decided my explanation was just fine! Hey, if my sister asks, I want to have an answer! And that one seemed as good as any!

I'm not sure I can help much other than to say that I think when you are sick you start to pay more attention or notice things differently than you would when you aren't. And maybe it is really nothing at all but just something that now he is hyper-aware of. I've noticed that with myself with a knee surgery, the slightest feeling in the surgical knee panics me, but I don't pay any attention to the other knee. Not nearly on the same scale as cancer, but I think the same concept applies. But as always, any and all odd things should be noted to the Drs. Though as I teased my sister when she would say something about a pain or feeling that I couldn't figure out, I bet when you tell the Dr they say, interesting, no idea what that is. Which has happened to us a couple of times. One time her Dr. was contemplating a symptom and I said what I thought and he just pointed at me and said "yeah, what she said, that sounds right". Good luck, I hope your Dad is feeling better soon and the sensations either go away or get explained or he just stops noticing them.

oh yes, pop vs soda is a big PA war. when i was in college, there was always at least one round of editorial in the school paper, the east versus the west. and soda vs pop was always a big part of it. we say pop n'at in da burgh.

Yes, I think we are all losing sight of the very good news that was in there. I hate when that happens, it has happened with us a couple times and we have to go back and say to ourselves, don't lose sight of the good news there! So congrats on the good news! And maybe you caught this guy on a bad day and next time you see him, you'll like his attitude better. In the meantime, forging on, with all our positive vibes sent your way!

for the record, Advair has a steroid component. it is a combination of a long-acting bronchodilator and a steroid.

Oh yes, yinz is a lot like youse. Sadly, youse sounds better than yinz. The N@ thing refers to another Pittsburghese word, which is I guess a contraction of And That, so it sounds like anat. Or N and the at symbol. It is often said at the end of a sentence - "Yinz want to go out, we can get some hoagies and pop, anat". And again I have to say, LOVE MY HOMETOWN. I kid because I love. I think there is only one guy selling the N@ symbols and he is in Squirrel Hill in Pittsburgh. I intend to go looking when I'm home for Kelly's surgery. Then I can promise at least two more of them will be driving around the DC area! Hope your brother is enjoying DC, great week to be here given how beautiful out it has been. I've gone running most days just because I knew I had to spend some time enjoying the lovely weather before it goes away again!

Yes, to Ken, back on thread, keep positive and pay no attention to that radiation oncologist behind the curtain! Was this your first experience with this dr? Sounds like one pro in the list for going to the cancer center instead. Or at least might you want to talk to another rad onc at MDA? I will say that while we adored my sister's rad onc, he is really Dr. Upbeat, the fact is, she didn't see him that often so even if he wasn't so upbeat, he might have been tolerable for us to deal with. I would never want that in a med onc though and it seems like you are pleased with yours. I wish I knew more (or actually anything) about proton therapy, and I hope someone on the board has some experience with it.

At my job, we don't call 3b incurable. There is a 10-15% cure rate with 3b. It is small but it exists. And i don't mean to myself be doom and gloom, the fact is that in the field, we use the words curative intent with 3a and 3b, we don't with 4. And we see many stage 4 patients treated slightly differently because of that. Doesn't mean that many stage 4 patients don't get the same dose/drug/schedule treatment, but they don't all. Some drs won't do concurrent raditation and chemo with stage 4, the attitude being that when doing so can't cure them, they don't want to put them through the rigors of the combination. Though i would strongly encourage anyone to be as aggressive as they want to and if you dr doesn't want to do that, then find a new dr. Kelly's med onc still thinks she is stage 4, the rad onc, surgeon and my co-workers and i disagree. But his words to her were that he still wanted to be as aggressive as he could and he wants the surgeon to take out her adrenal gland too. I love him for his combination of both compassion and agressive methods, sometimes you don't find them both in the same dr! And we all know that numbers are just numbers and although I find them helpful to a degree, mainly I'm sure because I work with them all day, for the most part, once people hear them, they should throw them out of their heads and attack with all they can and want to, and all that medical science can offer them. And just for you, I went back and added a few capital letters. But I wouldn't get too used to it, I just don't usually hit that shift key often. Since I type all day long for hours on end, I get very lazy. Thank heaven Word automatically capitalizes things for me. And don't get me started on my reliance on spellcheck! (which would have caught all the aggressives I had to go back and spell correctly) And apologies again, I don't mean to sound negative but sometimes it is hard for me to divorce myself from my profession. I have had to work hard to speak differently to my sister than I ever would at work. I can be too clinical and cold sometimes and that works in the global scenario of work but not when dealing one-on-one with my family and I need to work to not do that here either, as you all aren't data on my papers but real people. Not that I don't realize you are all real people and all, but the work hat stays on pretty much all the time, hard to take it off at times. It is actually one reason why I don't post that often here, I worry that I can be too clinical and it would be more like talking to the oncologist than to a friend/supporter/person in the same boat. It is an odd feeling being on this side of the desk, so to speak.

i find it odd based on my experience which has been that rad onc drs seem to be more optimistic than a lot of the med onc folks. which is not unlikely given the role they play in the process. med oncs see everything, the rad guys just see the patient for a finite period and send them off hoping for the best. so they do tend to have a bit more optimistic attitude. i found that with kelly's team but i also find it with my work colleagues. 3a and 3b can be cured, the numbers may be low and sure as heck not where we all want them to be, but the fact is, they can be cured and until all data says otherwise, the drs should be treating with curative intent. i used those words a lot when explaining things to my sister. she too did 2 cycles of chemo, then a scan that showed enough reduction that they could irradiate without as much worry of damaging healthy lung, then concurrent rad and chemo. and all of it done with curative intent. now we are heading for surgery and again, with curative intent. your rad does sound like a doom and gloom sort. i can't speak to the proton therapy vs standard radiation and comparative efficacy or toxicity. but i think you should listen to your med onc and forge ahead with curative intent.

i know nothing of this, but will follow along for details. i got my doctorate at ole miss, so i spent a lot of time in memphis. and one of my dearest friends still lives there, so visiting her and supporting a good cause could definitely be in my future plans!

you know those little stickers they have for cars now, with things like OBX for the outer banks of NC and other areas? well there is one that says N@ and my niece and i, who both live in the DC area, are desperate for them. there is another that says YNZR or something like that, as in yinz-er since yinz, a contraction apparently of you ones (??) is a big pittsburgh-ese word. that's good, but we love the N@ one the best.

or as it is said at home - a stillers game.

only one who has heard it can really understand. it is, to me anyway, the worst one out there. though great love for my hometown, i'd go back in a heartbeat if i could find a job there! when i would 'do' a burgh accent in mississippi, they all thought i was making it up. then an episode of "cops" aired and a few of them saw it, it was filmed in pittsburgh, and they all came in saying - oh my gosh, you weren't kidding!! very funny!