recce101

As the only male who has responded so far, I want to throw my full support behind everything you wonderful ladies have said. It's true, and definitely not laughable, that many caregivers die before the people they've been caring for. The stresses -- physical, emotional, financial -- are enormous and relentless. My dear wife was end-of-life caregiver for her father in 1997, then she and I shared that responsibility for my father in 1998, and during the entire period her nearly bedridden mother has either been in the hospital or living with us, and still is at age 93. It took its toll, it really did, even with in-home help. She had to close her business, withdraw from community activities, cut her social contacts -- and that was all before I got sick in 2006! I was an additional drag on her while I was hospitalized or recovering from surgery or unable to drive because the Taxol/Carbo had so blurred my vision, and though I've been fairly independent the past 16 or so months, I know I'm still klutzy and not quite "with it" mentally when trying to help with household chores or look after her mother so she can go to the store. I really think her mother will outlive us both (seriously), but with everything my wife has sacrificed for others these past 12 years, it would give me immense pleasure to see her out and about, picking up some of the threads of her life, thinking about what SHE wants for a change. If that means I'm in a long-term care facility somewhere, that's fine. That's what I've been paying LTC insurance for these past 10 years! Lynn, I'm sure that Larry simply doesn't realize what this situation is doing to you, and to your daughter for that matter. Maybe a third party can get best get that point across to him. My best wishes and Aloha, Ned

Tracy, one for me too, and no skimping on the salt, please! Major Congrats and Aloha, Ned

DRAT !

Hi, welcome to the group! I was writing up a response suggesting you check with Dr. West, but got distracted and when I got back to the computer saw that Randy had beat me to it. I'll be watching for your question on cancergrace.org and the reply, which you should see in less than 24 hours from Dr. West or possibly Dr. Laskin. It's an amazing resource, as you'll see when you visit. Best wishes to you and your husband, and give us more details when you can. Aloha, Ned

I've had both neuropathy (in the feet) and shingles (from the spine around the right side to just under the right breast). They were somewhat different sensations. The neuropathy was a combination of numbness and tingling and an occasional shooting pain with an accompanying loss of leg muscle control. Neurontin was very helpful. The shingles felt more like a sore muscle with burning on the surface, sometimes with a shooting pain, and there were some red welts in a couple of places that followed the route of that particular nerve from the back around to the front. I was given an antiviral (I forget the name) which cleared it up in about 2 weeks. I remarked to my doctor (our family physician in this case) that it wasn't nearly as painful as the stories I had heard. He said that's because I was already on Neurontin! He said the pain can be deep, on the surface, or both, depending on what parts of the nerve are most affected. Could be you have two different things going on. Has the tingling gone away? You should be alert to that starting againafter your next treatment. It's good that you're being aggressive about this. Good luck and Aloha, Ned

I'd like to welcome you to the group and reinforce what Rochelle said. The PCP deserves a lot of credit, and he needs to know about your experience with the pulmonologist. And thank goodness you're not one of those "yes, doctor, whatever you say, doctor" types!! Much Aloha, Ned

Good idea, Sandra. Here goes: Type of LC: Moderately-differentiated adenocarcinoma, stage IIIb (non-squamous NSCLC). Types of drugs: First line: Taxol/Carboplatin/Avastin 4 months. Some reduction in tumor size (but not enough to qualify as a "response"), locuated pleural effusion reduced, pneumothorax still present, energy and stamina somewhat better. No evidence of mets. Maintenance: Avastin 8 months. Tumor reduced further, then began to grow toward end of the period, but still smaller than at diagnosis. Loculated pleural effusion further reduced, pneumothorax "resolved," energy and stamina better. No evidence of mets. Second line: Tarceva since October 2007 (9 months so far). Tumor stable, loculated pleural effusion still small and stable, energy and stamina even better. No evidence of mets as of May scan. At the moment I'm discounting some lower back pain which comes and goes depending on activity (especially standing) and which I've had to a degree for many years. So far my cancer matches my personality -- no big highs or lows, sort of plugging along without much drama. Aloha, Ned

What an important topic! Our family is very open about end-of-life discussions, and we've had several, but even so, I find it EXTREMELY difficult to start one. Really, the only reliable way I've found to start that sort of talk is to hitchhike off of someone else's situation (we've been going to a lot of funerals lately) and let it transition into our own. We try to include everyone, because those 30- and 40-somethings are not immune -- they could be involved in a serious accident. Aloha, Ned

Denise: Sounds like Tom might have been down in the dumps for a while (can't blame him!) but maybe he's snapping out of it. Sharon might be your secret -- or not so secret -- weapon. Hope you and Tom both have a good night. Aloha, Ned

Thanks for the memory refresher -- that's about the way I remembered it. And aside from the dosage, another difference in the two studies was the drug combination. That explains why it's more common to see Avastin teamed up with Taxol and Carboplatin in the U.S. than in Europe. Dr. West (cancergrace.org, formerly onctalk.com) just returned from ASCO 2008, and he's been posting articles on what was covered there, but I didn't see anything new on the AVAIL trial. He did post something on AVAIL in April... http://cancergrace.org/lung/2008/04/21/ ... -negative/ ...which says there was no increase in OVERALL survival with either dose, but the significance of that varies depending on who is asked. Actually, I think you had good reason to request the 7.5mg/kg dose. If you're not already familiar with cancergrace.org, may I suggest that you add it to your browsing list. Many of us have "dual citizenship" there and here, and have the same usernames both places. Aloha, Ned

Hi, welcome to the group, and thanks for the detailed profile. It's great to see the impressive results you've had with Alimta, not only on your account, but also for those of us who may be getting that drug somewhere down the road. I do have a question about this item in your profile: Are you saying that after adding Avastin, your next CT scan DID show a return to baseline, i.e., improvement back to where it was before the November 2007 clear progression? If so, I think that's remarkable. Also, was there a particular reason you asked for the 7.5mg/kg rather than the more standard 15? I've heard that one trial showed the two dosages to have similar effectiveness, but 15mg/kg is standard for lung cancer because that's the way the primary trial that got Avastin approved for lung cancer was structured. If I got that wrong, please don't hesitate to correct me. Best wishes and Aloha, Ned

Thanks so much for that, Randy! Chanwit (Chuck) and I exchanged several lengthy PMs in the fall of 2006, shortly after I joined LCSC. We found a lot of parallels in our lives, some rather unexpected. I'm very happy for him, and I'll try his old email address in the hope that it still works. Aloha, Ned

Gail, you've been marvelous through this entire ordeal, and Hank was one lucky guy to have you by his side. He's fine now, and you will be too. Isn't that so true! I've often thought the same thing, and wondered how that could be. The bond we share seems to be on another level, different from most other relationships. It allows us to communicate very directly, almost "soul to soul," bypassing the inconsequential frills of physical features, mode of dress, accent, and material surroundings. It also exlains why many of us feel so lost when the site is down for a few hours. Much Aloha, Ned

Hi, Sarah, welcome to the group! You seem to have a very good grasp of the facts, and if you've decided to not have chemo, there's no one who can say you're wrong. For stage Ib, it could go either way, as you said. Bruce made a different decision, and I clearly recall the time when he was soliciting our comments on his own situation. If you haven't already, I suggest you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. Aloha, Ned

Thanks for the update, Kelly. Now you know what you're dealing with and can attack the cancer with everything available to you -- and that includes a positive attitude, which you certainly have. Let us know what specific chemo drugs are planned, and we can give you a better idea of the side effects others have experienced. Aloha, Ned

Hi, Toddy, welcome to the group! I agree the number of forums to choose from is rather overwhelming, but in practice it doesn't make that much difference where you post, since most of us who are inclined to answer use the "View posts since last visit" link each time we come onto the site and will see new messages regardless of where they're posted. For your adenocarcinoma (same type as mine) you could mainly stick with the NSCLC or General forums, maybe Test Time when appropriate, My Story when you're ready to post a detailed history, Member Photo Album to supplement that, etc. It's not a big deal, and you will never be hassled for posting in the "wrong" forum -- if something is obviously out of place, a moderator can move it. Best wishes and Aloha, Ned

That's great, Kelly -- you'll be a terrific nurse! Aloha, Ned

Hi, Lorrie, I answered your other post, in the thread on new clinical trials. Welcome to the group! Aloha, Ned

Hi, Lorrie, welcome to the group! Congratulations on getting into the START trial of Stimuvax.That's the approach to NSCLC and cancer in general that I think has the best chance of true success -- helping the body strengthen its own natural defenses. I've read some about it on cancergrace.org, and though I haven't really checked into it for myself, I have the impression that I don't meet the criteria, at least for the trial. But if I can stay stable long enough, maybe it will have something to offer my situation later. I'm sure many would be very interested to know more details of your original symptoms, treatments previously received, scan results, etc. Aloha, Ned

Welcome to the group, Jennifer! Aloha, Ned

I'm about halfway through my current 3-month lease. Thanks for the update! Aloha, Ned

That's great, Muriel! Aloha, Ned

ALL RIIIGHT !! Aloha, Ned

Gail, I love your attitude. Much Aloha, Ned

Hi, Candy, it's great hearing from you again! Best wishes and plenty of Aloha always, Ned