recce101

Hi, LeAnn, welcome to the LCSC! I missed your post earlier but see you've received some great advice. It puzzles me why so many doctors, including oncologists, seem eager to bombard patients with depressing statistics, often on the first visit. Some even do this without explaining that the numbers represent historical averages (or medians or means) of a large group of people with a similar diagnosis and have no direct relevance to any specific patient. As a hypothetical example, telling John Doe that only 50 percent of people with his particular diagnosis have survived beyond 5 years IS NOT THE SAME as telling John Doe that HE has only a 50 percent chance of being alive in 5 years. Not the same at all! No matter how bleak the statistics may be, there are always some who come out on the winning side. Who do you think the winners are most likely to be? Great, you've got the picture! I honestly don't know what the historical prognosis is for my subtype and stage. I've never asked or looked it up, no doctor has tried to tell me, and I really don't care. When I first met my oncologist I told him straight out that the curable versus incurable question was not a concern since I've been dealing with other incurable conditions for years, that I wanted the best treatment he could give me consistent with a decent quality of life, and that my goal is to keep the cancer beat back in the corner until I'm old enough to die of something else. A few months later, when I said something similar as he was leaving the exam room, he put his hands on my shoulders, looked me in the eye, and said "Ned, that's it -- quality of life!" By the way, I'm sort of an Okie, an ex-Okie at least. I grew up in Texas, but spent the three happiest years of my childhood in Altus, where we moved to be near relatives (cousins close to my age!) during World War II. Then toward the beginning of my Air Force career I attended pilot training at Vance AFB (near Enid) and stayed on as a flight instructor for three years. OK is one of my favorite states. Aloha, Ned

I don't know if I qualify as "new," but if I don't know how the Pub works, then I guess I qualify. So now I know who used to run it, and who will run it now, but still don't know how to get there from here. Is it a chat thing, or a rapid-fire discussion thread thing, or something else? Aloha, Still Confused, My New Normal

Candy, I've been asking about you and your mom. I had an uneasy feeling deep down that it was something like this. You were, you ARE, a wonderful daughter, and your mom was so fortunate to have you with her every step of the way. Love and Aloha, Ned

Great examples of the proactive approach. Next-door neighbors, workplace associates, party-time companions -- even family members -- come in different flavors. Some will do almost anything for us IF it's related to the neighborhood, the workplace, partying, or a family gathering, as the case may be. But if we have a serious illness or misfortune that removes us from the environment in which they've known us, about all we can expect from most people is a card and maybe a visit. An occasional phone call and perhaps another visit or two in the weeks and months ahead? Exceptional, and a gesture that we must reciprocate in some way no matter what! If we have counted any of the one-card, one-visit people as "true friends" who, if the situation were reversed, we would "be there for" unconditionally even if it meant rearranging our own schedules and priorities for an indefinite time into the future, then of course we might feel disappointed and hurt. But realistically, we can't expect that level of commitment from more than a very few with whom we share some fundamental connection. It's almost like the "in sickness and in health" part of the marriage vows! More often than disappointment, I've felt genuine amazement when certain people (not just since I got cancer, but in general) have come to my aid repeatedly at considerable inconvenience to themselves. These are people from whom I would have never expected such a response. If it's true that adversity will show us who our "true friends" are and that we may have some surprises, it's nice to know that some of these surprises may be pleasant ones. Aloha, Ned

I was starting to come to a similar conclusion, although I've never read that anywhere. Many people my age (and much younger) have arthritis and bursitis problems, and from their description it sounds much like what I've been experiencing the last 3 or 4 months. I know Avastin greatly retards healing -- you don't have to look further than my arms to see that. I also know that all sorts of other irritations -- inadvertently biting a lip, burning the mouth with hot pizza cheese, etc., etc. -- take a lot longer to resolve. So any type of muscle or joint repair which depends on the formation of new tissue must be affected as well. Since that's how Avastin attacks the cancer, few complaints are coming from this corner, but I will keep the cortisone in mind in case things suddenly get a lot worse! Aloha, Ned

Cheryl -- My best wishes for a positive, long-lasting response. Please keep us updated on how you're doing. Aloha, Ned

I'm incredibly relieved that you were able to move your mom to safe, caring surroundings -- relieved for you as well as for your mom. With our family's very best wishes and warm Aloha, Ned

I definitely recommend the port. Installation was simple (done under local anesthesia at my request) and recovery was rapid (just minor soreness for a few days when moving the arm on that side). In my case, the position of the port catheter in the vein ended up at somewhat of an angle and blood cannot be withdrawn readily, though infusions are unrestricted. From what I've read, this is a rather common problem (about 25%) with my type of port, and while the extra needle sticks for blood tests have not been a problem for me, this could be a disappointment for someone with marginal arm/hand veins. Also, imaging techs have not seen fit to use the port for dye injections before or during scans, giving a variety of reasons such as "the dye is too thick and will clog the port" or "the dye is injected under pressure and will damage the port." I've been told that it is possible to use the port for dye injections if the oncologist includes that in his scan order, but so far I haven't felt the need to ask for that. So in sum, I'd say one and a half thumbs up for the port. Aloha, Ned

Excellent advice! The hospital social workers my wife and I have dealt with concerning my father and both of her parents have been supportive, caring, and very helpful making many kinds of arrangements. That's their expertise -- let them help you -- you shouldn't have to bear this alone. Much Aloha, Ned

Hi, Deb, welcome to the LCSC! I'm sorry to hear about your husband, but glad you found us. Of course you're super-busy right now with a new job on top of everything else, but please, as soon you get a chance, give us more details on your husband's condition -- what cell type of NSCLC, stage, symptoms, specific chemo agents he's getting, etc. That will help us give you solid, useful information whenever you have questions along the way. The best to you both, and Aloha, Ned

That's great! It's safely in my keep-for-sure file. Aloha, Ned

MARVELOUS!! Aloha, Ned

If she's still on chemo or was until recently, that could be a cause of blurring or other visual symptoms. Take a look here: http://onctalk.com/bbPress/topic.php?id=344 I hope it's nothing more! Aloha, Ned

Hi, GrammyJones, I'm so glad you joined us! Your marvelous story will be a great inspiration to others, especially those who arrive here shortly after receiving their own SCLC-ED diagnosis. I personally think the prognosis question is poorly handled by many physicians, even oncologists, who leave the impression that the "x-months" part is custom-designed for the specific person they're talking to rather than an average (or mean or median) of hundreds of people with a similar diagnosis. To your great credit, you took that bit of "information" as a personal challenge -- all too many take it as an irrefutable fact and die on schedule, almost as if under a curse. Can you tell that I feel strongly about this? I'll be having my own first anniversary of diagnosis on September 1 -- how time flies when you're having fun! -- and by then will have celebrated my 72nd birthday. Like you, I'm feeling better now than I have in over a year. To expand on what Randy said about your diagnosis/treatment/etc. profile, after you click on My Profile above, scroll down to the Signature block to enter/update your information. Although there aren't any formatting codes shown there, you can use the same ones displayed above the Post a reply block I'm using now. In fact, you might find it handy to open a reply block in a second window, type your profile info there with any formatting codes you want, use the Preview feature to check your work, then instead of clicking Submit in that window, copy-paste everything back to the Signature block in the first window. Scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. Aloha, Ned

Not at all. If the roles were reversed, wouldn't you want her to have some "time off" to recharge her batteries? Aloha, Ned

Hi, Sophie: Your mom's rapid improvement is truly wonderful news, and after this breakthrough nothing would surprise me. I really hope you'll keep us updated on her condition. I think many of us have had experiences that transcend the generally accepted boundaries of space and time, but any explanation I could offer would be half-baked at best and definitely not ready for prime time. Maybe someone else has pondered this sort of thing more thoroughly than I have... Aloha, Ned

That's similar to my diagnosis, except I didn't have node involvement, and they did find the primary in my middle lobe. Treatment was the same as she is programmed to have, except for the Tarceva part. The effusion may need to be drained (thoracentesis) if it's causing shortness of breath. Sometimes they gradually clear up with chemo. Mine has reduced in size, but there's still a hydropneumothorax (trapped pockets of air and fluid) in the lower half of the right chest partially collapsing the lung. If hers is still primarily fluid, it may resolve more completely than mine did. Give her my best. If she still has questions after reading my profile, please let me know. Aloha, Ned

Wow! I hope a T-shirt sleeve was okay. Aloha, Ned

Hey, Kgirl, you've got your plate way past full I'd say. I check your blog occasionally and keep hoping better times will come your way, but I guess it's not to be for a while. It's even clearer now that you made the right decision about that trip. Aloha, Ned

Hi, and welcome to the LCSC! Wow, if you went through chemo over 20 years ago, I bet you'll find a world of difference now. One of the major improvements has been the development of "premed" IVs to counter some of the worst side-effects like nausea. Let us know what chemo agents you'll be getting and we can be more specific. Here's a section of onctalk.com dedicated to various treatments, including chemo, from the patient point of view: http://onctalk.com/bbPress/forum.php?id=19 Even if you don't have much in the way of questions, please post as often as you can -- your perspective should be quite informative to others. Aloha, Ned

Laugh-In Aloha, Ned

That shouldn't happen, although some people (none here that I'm aware of ) seem to take every opportunity to misunderstand and take offense. Any carereceiver with mental faculties relatively intact simply MUST understand and appreciate that the wellbeing of the caregiver is essential to their own wellbeing. If something happened to my dear overburdened wife, her mom and I would both be in DEEP KIMCHI - her mom almost immediately, myself potentially somewhere down the line, and we all know that. Doing everything possible for oneself and keeping a genuine "thank you" part of one's everyday vocabulary may lighten the caregiver's burden just enough to keep that last straw out of sight. Aloha, Ned

Anyone heard from Candy (patscan)? Last update I saw on her mom was in late May. Aloha, Ned

Spicy: There's a good chance it's the chemo. Take a look at this thread on onctalk.com: http://onctalk.com/bbPress/topic.php?id=344 Aloha, Ned

Sorry, Raney, wrong gender. I've got dibs on this trade! But there are a few things of my own I'd want to keep, like my opinion of statistics... Aloha, Ned