recce101

Greetings from Tennessee! I'm here for a week visiting my daughter, who has a hilltop house several miles south of Nashville. Our son flew here with me from Hawaii, and the other daughter drove down from Michigan. Granddaughter, who is about to graduate from Michigan State, will be here Thursday, so we're having a nice reunion. Wife stayed in Hawaii with Rosie, but I did get to see ex-wife (mother of the two daughters) for the first time in probably 40 years. Take care, all! Ned

It's even funnier when you try to read it out loud! Ned

That's great, Nicole! And it's good to see your smiling face again. Best wishes for your mom's quick recovery from the fracture. Aloha, Ned

Hi, Smitty. I'm very simpatico with the comments you made back on October 28. Although I'll never have the strength and endurance I once had, I feel that in many ways I'm a better person as a result of my cancer experience. Not that I would ever recommend it as a preferred path to self-improvement! Welcome to the "new normal." Best wishes and Aloha, Ned

Welcome, Marie, it's great to have you with us! Aloha, Ned

Hi, Liz, welcome to LCSC. I believe I "spoke" to you over at GRACE. You've picked the two best support sites, that's for sure! Aloha, Ned

Hi, Mandy. Yes, please tell us more about your dad. This is a good place to start, but most of us read every new message regardless of what forum it's in. Later you can pick more specific forums for your posts when it seems more appropriate. Aloha, Ned

Hi, Sandi, welcome to the group. I've had both of those chemo combinations, and they're thought to be about equal in effectiveness. I guess the purpose of the trial is to narrow that down some. For most people, the Alimta/Carbo combination is somewhat easier to tolerate, but if you don't have a choice, we probably shouldn't dwell on that aspect. One good thing about clinical trials is that you'll be monitored very closely. I second ts's suggestion to check out cancergrace.org. You'll be impressed at the amount of reliable information that's freely shared. Aloha, Ned

Watch this! http://nottotallyrad.blogspot.com/2009/ ... to-do.html Ned

Susan, my deepest condolences. Peace and Aloha, Ned

Hi, Leslie. Keeping in mind that everyone is different and there's a lot of variation in what side effects an individual will get from a particular chemo, I'll just say that of all the chemos I've had in the past 4 years (see below), Cisplatin was the roughest and I refused to have more than one infusion of it. On the other hand, Navelbine alone is the easiest I've had, and it's resulted in the first shrinkage my tumors have seen since 2007. Do you know your mom's lung cancer subtype? If it's adenocarcinoma, Alimta would be a good chemo choice, and it could be effective given alone. And either adenocarcinoma or squamous cell carcinoma might respond to the daily pill Tarceva, even if she doesn't have the EGFR mutation which predicts a very good response to that drug. As ts indicated, you'll get the very best treatment information at cancergrace.org (GRACE, Global Resource for Advancing Cancer Education). Try entering this in a Google window: site:cancergrace.org cisplatin navelbine Aloha, Ned

Hi, Pam, welcome to the group. As you've probably heard too many times already, you're "lucky" to have had symptoms which led to a diagnosis before you had reached an advanced, incurable stage. We'll look for an all-clear on every one of your future scans! Everybody deals with cancer in a different way. Many see it as a "wake up call" and find that, in spite of some physical limitations that were not there before, their lives become richer and more meaningful because of the experience. That said, we all agree that cancer sucks!! Aloha, Ned

Wow, Eric, there really is such a place! "The Bonnie Banks o' ..." was one of my favorite songs growing up. Thanks for the photos! Ned

That's about as good as it gets! We think your husband is pretty cool too. And I'll bet you're having a great celebration. Aloha, Ned

I understand what you're saying, and I've had the same hesitation at times. But the more I've thought about it, the more I've come to feel that we're all in this together and it's not a "zero sum" game. We're not competing against each another, so one person's success or good fortune does not count against or diminish someone who is having more difficulty. I'm really glad you posted and look forward to celebrating your mom's 52nd birthday next year! Aloha, Ned

Hi, Lisa. It's good that you've been reading up on squamous cell lung cancer and the common treatments, and it's a very good idea to have a list of questions for the oncologist when you see him. Make sure you're ready to take notes, and in fact I'd recommend taking a small digital recorder to the session. I seriously doubt that the doctor would have any objection. Here are a few questions, and you've probably thought of most of them already: 1. What chemo agents are being recommended, and on what schedule? 2. What are the expected side effects of those drugs? 3. What complications/symptoms would merit a call to the oncology clinic, and who should you ask for? 4. If it's a weekend or holiday, what complications/symptoms would merit a visit to the ER? 5. When will a followup scan be scheduled? I would recommend that you not ask about prognosis. Any number you'd get at this point would be the average/median survival of a very large number of patients with a similar diagnosis at some point in the past, and there's a great amount of variation from one end to the other of that group. Since nobody knows how well your dad will respond to treatment, any number that you could get right now would be essentially meaningless. When I received my diagnosis, if I'd asked or if my onc had volunteered such "information" (which I didn't and he didn't), I'd have probably heard something like 10 or 12 months. Well, it's now been over 4 years, and I'm feeling better than at any time since this whole cancer thing started. You just never know. If you haven't visited the GRACE site and need some more reading material, type this in a Google window: site:cancergrace.org squamous Aloha, Ned

That's a good one! I think most of us don't have that much control over our lives. Ned

Well said, Kasey! Ned

Hi, Keli. Yes, Alimta does cause some fatigue in most people, and a lot in some. I also felt some shortness of breath while I was on it, especially in the first few weeks/months. It seemed to cause some soreness around the rib cage, and in retrospect I think this was due to some initial swelling there. The swelling/edema moved around my body from one place to another and back during the 12 months I was on that chemo. There's more detail in the link in my signature area below. Great news on the stability! Ned

Hi, Lisa, welcome to LCSC! I can see you've learned a lot in the past few days and weeks, more than you ever wanted to know about lung cancer. You have a good grasp on the situation, and things should a lot clearer when you get the biopsy and PET results next week. Even if it turns out to be stage IV cancer, for which systemic (whole body) chemo is the indicated treatment, it might be possible to use carefully targeted radiation on the tumor which is pressing on the blood vessel and airway. If so, this could resolve an immediate (and perhaps critical) local problem even though it would have no effect on the overall course of the disease — your dad would need chemo for that. I second ts's suggestion to visit cancergrace.org (GRACE, Global Resource for Advancing Cancer Education). If you use the same username there as here, as most of us "dual citizens" do, we'll recoginize you right away. I suggest you use part of your reading time over the next few days to read some of the excellent (and very current) articles there. From the GRACE home page, use the "Find Info About" dropdown, select "Lung Cancer," then click the "Subject Archives" link in the right column. Best wishes and Aloha, Ned

That's terrific, Alisa — thanks so much for posting the good news! Ned

Hi, Frank, welcome! There are a couple of ways to respond to individuals. One is the way you just posted, using the Post Reply button at the top or bottom of the message group/thread, and putting the person's name or username in the first paragraph of the message. Use that method if you think there's any chance that any others might gain from reading your reply. The other way to contact an individual is with a PM (Private Message). If you want to respond directly to Kasey, for example, click the PM button at the bottom of her message. No one else will see the message. Aloha, Ned

Agreed! But the GRACE docs are starting to decline requests to interpret large verbatim sections of scan and pathology reports. Aside from the amount of time involved, and the fact that the reply would be of little interest to anyone other than the individual concerned, they say these reports can be interpreted properly only with direct access to the individual patient. The GRACE docs believe that the local docs are the ones who should be explaining such reports to their patients. But if there are one or two items in a report that are especially confusing, or it there's a question that could apply to more than one individual, they do a great job at laying out all the options and considerations. Ned

Hi, emac, welcome to the club you never wanted to join! True, they can't. Notice the CT report says "likely" or "most consistent with" a primary pulmonary malignancy. Even though the doc may have said you have lung cancer, I'll wager he put "suspected" or something similar in his notes. But be that as it may, assuming you do have lung cancer, they still need a biopsy to see what type and therefore what treatments are appropriate. Michigan Judy gave you a good list of questions to get answered at your 9/9 appointment. When you get started on a treatment plan, things will settle down a lot. Hang in there! Aloha, Ned

Hi, Krisee, welcome to LCSC. As ts suggested, give us a little background on your diagnosis, treatment, scans, how you're feeling now. And if you have any questions, just ask away. Collectively, this group has seen it all. Best wishes and Aloha, Ned