recce101

Congratulations on the new puppy — and congratulations to Harper for making a wise choice of family. Dogs are SO cool, better than people most of the time. It's down the hill in a couple of hours to make another try at Navelbine. My WBC should be okay now, and I'm feeling really good — or will be for a while... Ned

You guys have really come through for Gemma, like I knew you would. And Gemma, as you can see, you've come to the right place! I was "lucky" enough to be over 65 when diagnosed, so I didn't have any hassles qualifying for medical care. My only contact with the VA so far has been applying for the Agent Orange compensation, but I'm having trouble proving I was ever "boots on the ground" in the Republic of Vietnam. I was only there for a week, delivering an airplane to our sister squadron near Saigon, and for security reasons we hardly ever got anything on paper saying exactly where we were going. We flew out of a base in Thailand and spent most of our time over North Vietnam, which doesn't count for Agent Orange purposes. If I ever do get the compensation, it will mainly help my wife after I'm gone, so it's definitely worth making the effort to qualify. Also, the rules keep changing for the Navy people who were offshore near RVN but not actually "in country," so if your husband was ever anywhere close, he should apply for the benefits. The benefits are generally retroactive to the time the application was made, and periodically the VA rescreens old applications to see if additional people qualify when a rule changes. Hope you get to stay in the house. That's a biggie! Aloha, Ned

Hi, Bonnie. I don't think we've crossed paths before, since all but a couple of your previous posts were before I joined LCSC, which was in September 2006. Do you know the cell type of Howard's new cancer? Alimta is usually quite effective against adenocarcinoma, but recent trials have shown it to be almost useless with squamous cell. There's a new website that you might not be aware of, cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. He or one of the other oncologists on the GRACE faculty can give you the pros and cons of PET scans and answer your other medical questions. I'm really sorry to hear about this latest turn of events and wish you and Howard the best. Aloha, Ned

I'm actually feeling quite well today, so assuming my white count is up enough next Tuesday, I'll be starting Navelbine again. This time I should have the knowledge and medications needed to keep the Mr. Peristalsis alive and well. The next question will be, is Navelbine working? Won't know that for another couple of months. Aloha, Ned

Hi, Gemma, welcome to LCSC. We have a number of members who have received good care through the VA, and I hope some of them will see your post and respond. Please keep us updated as your husband goes through the various tests and let us know what questions arise. Aloha, Ned

Hi, Claudia, welcome to LCSC. I saw your post at GRACE and must say you had quite a day yesterday! After you talk to your oncologist and get the results of the biopsy and any scans as well as the treatment options presented, give us an update so we can let you know what to expect from a patient's perspective. In the meantime, you might read through some of the detailed accounts in the My Story forum. Good luck and Aloha, Ned

In case anyone is wondering why my posts have been rather scarce the past couple of weeks, you might want to read this: http://cancergrace.org/forums/index.php ... 4#msg23294 I believe things are smoothing out now. Aloha, Ned

The carcinoid is almost like a PRE-cancer, and I believe I sent you an excerpt from something Dr. West wrote on the subject. Your news is like a bright ray of sunshine, and a great way to start a Monday morning. Please keep posting! Aloha, Ned

Happy 80th to your mom! Ned

Welcome back, Geri — I think you deserve two birthdays! Ned

Meeko, my heartfelt condolences to you and your mom. I don't have much advice to offer other than what Judy has already suggested. You can expect your emotions to be on the surface for a good while, and those delightful funny stories about your dad will often end in tears, but you shouldn't avoid talking about him trying to avoid those tears. In time you probably won't miss his physical presence quite so much, and his essence will always be part of your family. My Aloha, Ned

It's getting to be that pharmacists are some of my favorite people! Ned

Many of us have had the same feeling. Welcome to LCSC, Eric, and congratulations on your success! Now, could you do us one more favor? Watch the board for new members and give them a note of encouragement as they begin their own cancer journey. You can create a link to your story in a "profile" that will automatically attach to every message you post, something I and others have done. Your link would be: http://lungevity.org/l_community/viewto ... highlight= Best wishes and Aloha, Ned

I agree with Judy. The difficulty finding a good vein in the hand or arm will probably increase with each treatment, and like you say, a pump will just get the chemo where it's not supposed to be faster. Ned

Melanie, you're a jewel and an inspiration! Much Aloha, Ned

That's terrific, Dawn! Aloha, Ned

Good advice from all. For most people, Alimta is one of the easiest chemos to tolerate, especially when not combined with one of the platinum agents. For one thing, it's a very quick infusion. My main side effects have been fatigue (though not as bad as Taxol/Carbo) and some swelling of legs and arms. One of the things I like best is that it hasn't affected my taste or appetite! Alimta is probably coming to the end of its usefulness for me, but aside from that, I would have no hesitation in staying on it indefinitely (I've had 18 infusions over the past year). As they say, you can always stop if it's too much, as I have with a couple of other drugs. Aloha, Ned

I think it's more likely that there were other poorly handled cases like yours, the insurance administrators got hammered for bad service, and they changed their ways. Now, doesn't that make you feel better? (Whether true or not!) Ned

Awesome, Connor! Ned

Terrific! And thanks for the detailed chronology in the profile. Aloha, Ned

This time I'm getting the full chest-abdomen-pelvis routine, so I have that delicious barium breakfast drink to consume before the scan. I'll get the CD, so I can pretty much tell immediately how the lungs compare to last time, but the other stuff is a mystery and that's where the surprises can occur. I won't be seeing the radiologist's report until the next week. Have a good day, all. Ned

Hi, Maribeth, welcome to the group! I believe we have some stage IV members who are NED and others who are stable and not currently on treatment. You might be hearing from a few of them. I've been on treatment continually for almost 3 1/2 years, but there's a possibility I'll be taking a treatment break at some point depending on what my next scans show. I understand what you're saying, but consider this. While stage IV is generally considered incurable, I believe cures have been achieved in some cases ("cure" being defined as 5 consecutive years with no evidence of disease). And if in fact your various treatments have eliminated all of the micrometastases in your bloodstream, continuing treatment without a known target will cause damage to your body that might otherwise be avoided. If you allow your bone marrow and other body reserves to recover, you'll be better able to handle other physical challenges that may come your way in the future, whatever they may be. May I suggest that you post a similar question at cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. You'll get a thoughtful and reliable answer from one or more of the oncologists on the GRACE faculty. Congratulations and Aloha, Ned

Many thanks, Bruce, and please keep us updated. Aloha, Ned

Hi, Judy. So you got your computer behaving? Is this a new one? It's still dark here, but it's chemo day so I needed to give my Lasix time to finish working before I head down the hill. Usually from the time I pop that pill until I can leave the house is about 3 hours. This last cycle has been a relatively easy one, and I think not taking the Decadron tablets last time helped smooth things out. We're doing the same thing this time — Decadron only in the IV — hoping for another soft landing later in the week. Have a good day, all! Ned

If you're using Internet Explorer, the CTRL + mouse wheel is a shortcut for the zoom control which is at the bottom right corner of the screen (that is, if you have the IE Status Bar visible). I've forgotten how you do it in Firefox. One of these days I might go back to Firefox or one of the others if IE keeps having all these security issues. But then the hackers target the most popular browsers, so whenever some other one gets to be top dog, most of the attacks will be on it! Ned