recce101

Coni, I read through your husband's profile again (which you've been updating -- thanks!) and I think I see something similar to what I experienced. I'm an optimistic realist (my term), possibly much like your husband, and in spite of some irritating side effects, my spirits remained pretty high through at least the first 3 cycles. Then around the 4th cycle, I sort of went into the dumps -- nothing serious, and probably nothing approaching clinical depression, but out of character for me. I think basically I was just getting tired of putting on the happy face and knowing that as soon as I started feeling good again it would be time for another treatment and another series of junk days. My mood started to lift during the 5th cycle, even though some of the side effects were continuing to build -- there seemed to be light at the end of the tunnel, since I was programmed to get a total of 6 Taxol/Carbo treatments then go on Avastin alone, which I figured (correctly so) would be relatively easy. My down period had nothing to do with considerations of mortality, survival, or anything like that, just the quality of life issues that I was getting fed up with and that I knew were being caused by the chemo. I'm not saying this is what your husband is feeling, but could be. Aloha, Ned

Hi, Caty, welcome! Like Muriel, I was wondering about your cell type also, then saw it in the title of your post. Seems like we wouldn't have missed it there, but goes to show ya! Let us know what specific chemo drugs you'll be getting and we can give you some first-hand tips on side effects and countermeasures. I'm glad you found us early in your cancer "career" -- it's a great group! Aloha, Ned

You're both doing great! My fatigue was usually at its worst the third and fourth days after the infusion, then energy started to return, just in time for the next cycle! But it was never so bad that I couldn't be productive during the day -- just meant that an afternoon nap was a must instead of a luxury. Another common side effect is eating difficulties, not just from the change in taste (that can be overcome with willpower) but because of mouth/throat/esophagus irritation from both the chemo and radiation. We'll have plenty of suggestions for you if and when that starts happening. Keep in touch! Aloha, Ned

Every doctor, hospital, and imaging center I deal with accepts Medicare "assignment," meaning that no matter what "charge" they put on the bill, they accept as payment in full the Medicare "approved" amount, which can be much, much smaller. Of the "approved" amount, Medicare pays 80%, leaving the other 20% the responsibility of the patient, which may be paid partly or entirely by any supplemental insurance the patient may have. So there are two main concerns: 1. Does the doctor or medical facility accept Medicare assignment? I've never encountered one that didn't, but that may not be true in some parts of the country. Wouldn't hurt to ask. 2. How good is my supplemental insurance? Do they automatically pay the remaining 20% of every claim approved by Medicare, or do they have their own list of approved providers, procedures, and amounts? That can be a BIGGIE. If they do pay the 20% of all Medicare approved claims, then the patient's only out-of-pocket expense would be for prescription medications obtained from your neighborhood or mail-order pharmacy, and your drug plan co-pay amount would apply in this case. A medication such as Tarceva would come under your drug plan. Figuring all this out from the paperwork you receive in the mail can be a daunting task, and some phone calls may be necessary. But overall, I've been very impressed with Medicare. I hope it will be there for the next generation! Aloha, Ned

Hi, Chris, it's good to see you posting again. It sounds like you've been a great help to your mom, and I hope the situation for both of you begins to smooth out soon. Aloha, Ned

That's great -- you're both now full members of the Doesn't Take Much To Make Me Happy Anymore Club! Aloha, Ned

Kathy, thanks for the update. I know a number of people with SCLC who responded exceptionally well to chemo. Let us know your specific treatment plan once you get it. You're doing great! Aloha, Ned

Hi, Lisa, we met on cancergrace.org -- welcome to LCSC! Aloha, Ned

Lynn, my deepest condolences. You've been marvelous through this entire tragic episode. Peace and Aloha, Ned

I've heard of exceptions, but the majority of people on Taxol DO lose their hair, starting about 2 weeks after the first infusion. Many people find it's less traumatic to just take charge of the situation, and when it starts falling out in clumps, get someone to cut it all off. There's been some previous discussion among the ladies here about the merits of a wig versus a stylish head covering, and I won't get into that, except to say that bald can be beautiful too! Don't ever hesitate to ask a question or make a comment -- there are no nuisances on this site. Aloha, Ned

I was going to answer this yesterday since it seemed so incredibly simple -- I copy-pasted "gencitabine" (with the "N") into a Google window, and there it was, with numerous articles discussing gencitabine and Eli Lilly's Gemzar. But then I figured, Sandra surely knows how to use a search engine, and it would seem sort of, well, condescending for me to say yes, you're right, 'cause I found it with Google! So now Randy says the "M" spelling is correct, and I found that in Google too! If "Gemzar" is searched for, most of the references have the "M" spelling. So maybe both ways are correct, or "M" is correct and the "N" users are just being cut some slack. Glad I didn't answer yesterday! Aloha, Ned

Hi, Susan, thanks for the info. Taxol/Carboplatin is a very common treatment for NSCLC -- I've heard it referred to as the "gold standard." That's what I had as a first-line treatment, along with Avastin, which is frequently added for adenocarcinoma (my cell type) but not often for squamous. Oncologists and chemo nurses generally have a lot of experience with Taxol/Carbo and there aren't many surprises. They will be watching closely for any allergic reactions during the infusion, especially the first one, but the only thing I felt during any of my infusions was drowsiness when I got the Benadryl premed. Some people use that as an excuse for a nice nap, but I was always anxious to regain my alertness so I could watch my DVD movie! Side effects generally don't begin until a day or two after the infusion, and fatigue is probably the most common. If you read my treatment summary, you'll see several references to skin problems such as foot blisters, but that seems to be more of an individual thing for me, and fortunately for others it's not that common. I didn't have radiation, so I was on a 3-week chemo cycle. Those getting radiation usually get a smaller chemo dose but more often, to even things out and avoid some of the ups and downs of the 3-week cycle. Is radiation still part of the plan for your mom? Have a great weekend! If any questions come up, be sure to ask, otherwise let us know how things go Monday. Aloha, Ned

Judy: The only thing I could definitely attribute to Avastin was slow healing. Existing scrapes, cuts, GI irritation from previous Taxol/Carbo, etc., were slow to resolve or simply did not resolve while I was still on Avastin. In addition -- and this is sort of hard to pin down -- it seemed like I was more prone to wear and tear from ordinary daily activities. Muscle and joint strains, even minor ones that normally would have been gone in a day or two, would continue to accumulate. My shoulder range of motion slowly decreased to the point where exercises which I've done for 50 years became impossible. I was pleasantly surprised to find that within a month after stopping Avastin I was able to gradually break through that limitation and within a few months my range of motion was back to normal. Within the past week I believe someone other than you asked about neuropathy-like pins and needles in connection with Avastin. Maybe it was on GRACE? About the mouth and lip problems, is it possible that some minor irritation (hot pizza cheese, chapped lip) has taken on a life of its own because of the slow healing effect? Aloha, Ned

Judy, shame on you, taking control of your own life! But you can't argue with success, and I imagine deep down you were convinced it wasn't serious. Welcome home. Aloha, Ned

That's good to hear! Give us the names of the chemo drugs she'll be getting, and those of us who have had the same combination can give you (and your mom) some tips that you probably can't get any other way. Best to you both. Aloha, Ned

Hi, welcome to the group! I doubt if you'll be hearing much from our mainland friends until Wednesday morning, but the night is still young out here in Hawaii, so I'll start with a couple of general comments. We place very little importance on the prognosis figures some doctors like to quote, because these numbers are just averages/medians for a large group of people with a similar diagnosis, and there is a GREAT amount of variation from one end to the other of any such group. The data may be useful to Medicare bureaucrats or insurance executives in deciding what treatments to cover and for whom, but they are essentially meaningless for any individual patient. Many of us here have long outlived any prognosis figures we may have been given upon diagnosis, and some of us (like myself) made it clear to our doctors that we were not interested in that sort of "information." Also, there can be a lot of confusion as to what a particular prognosis statistic is trying to convey. It can be given as a percentage of people with a certain diagnosis and stage who are expected to be alive at a certain point (1 year, 2 years, 5 years, etc.) or it can be given as a period of time (12 months, 18 months, etc.) that half of the people with that diagnosis are expected to be alive. It's easy to miss the "half" part and think that "I" have 12 months, 18 months, or whatever. Or with the percentage method, if we're told that our group has a 25 percent chance of surviving to x-number of months/years, we see we're on the short end of the stick and start to feel defeated already. The fact is, there will always be people at the GOOD end of the curve, and if your mom is in good health aside from the cancer, there's every reason to believe she can be one of them. The other comment is about treatments. If your mom has just received the orientation session on side effects, and the person doing the presentation was the detail type who wanted to cover every eventuality, I can understand why she may now have some resistance to starting treatment. But people are highly individual here too, and all the possibilities given are just that, possibilities. Some people breeze through with little more than fatigue, while others have serious side effects which require the delay or termination of treatment. If you can tell us specifically what drugs are planned and the schedule of treatments for radiation and chemo, members here can give you their first-hand experience with the same combination. Also, if your mom has spoken to friends who went through chemo 10 or 15 years ago, it's important for her to realize that there have been some remarkable advances made, especially in terms of "premeds" given by pill or IV at the beginning of the chemo session. Nausea, in particular, is now rather uncommon. A fall-back position would be for her give it a try, knowing that she can quit if it becomes too much. If her clinic is anything like mine, there's camaraderie and mutual encouragement among the patients, and the staff goes out of their way to make everyone comfortable. At my clinic, the chemo room has the best location on the floor, a corner room with wrap-around windows and a panoramic view from Pearl Harbor to the Waianae Mountains. Now on the other side of the coin, we also have plenty of members who value quality of life over a little more longevity, and I'm one of those too. We can discuss that someday, but we're not there yet. Best wishes and Aloha, Ned

Thanks for starting this thread, Sarah, and thanks to the others who have been willing to express their own thoughts, incomplete and conflicted as they may be, for the rest of us to share. For myself, a somewhat spiritual and "universal" person but not religious in the conventional sense, I thought I had things pretty well figured out at one point. But that all changed some 23 months ago, and I'm still "working on it." Aloha, Ned

Now that one HURT ! Ned

Hi, Mary, welcome to the best group anyone ever joined that nobody ever wanted to join in the first place! Aloha, Ned

Hi, Deb, welcome to the group! Thanks for sharing your remarkable story with us and those to follow. Best wishes and Aloha, Ned

Sandra will never be spineless, but painless would be nice for a change! I think we may be getting there. Aloha, Ned

Hi, Mary, it's good to see you back. Also happy there are some encouraging developments fot your husband. Aloha, Ned

shoved a tennis ball in his mouth and

Hey, Fred, I'm sure glad you're back doing this again! Aloha, Ned

Hi, Kathy, welcome to the group! Looks like you're well on your way to getting a definitive diagnosis so you can take action against this thing, whatever it is. We'll be looking for your update on the 23rd or shortly thereafter. Best wishes and Aloha, Ned