SDianneB

Ok, so stop it with this "bad day" stuff, ok? Like it's that easy. I know firsthand that when your gallbladder gets all stopped up and stony, it makes you feel BAD. I can't recall being as sick for so long with anything else I've ever had in my entire life as I was when all that was going on with my gallbladder. I hope you can get yours fixed up SOON, and get to feeling better, bless your heart. Di

Memorial Day 2004. The day I finally gave it up and admitted I was very sick and went to the ER where, over the next 5 days, I was diagnosed, scanned and biopsied, and started on chemo before leaving the building. I truly did not know if I would still be alive today. I finally located this forum, made a post, dove in head first, and the rest is behind me now. Aside from these pesky and unwanted liver "spots" (mets) I'm finally feeling better than I have in a while. I'm over the food aversion hump for the most part, have been eating like it's going out of style, blood counts this morning were "perfectly normal" after 1 5-day round of Topotecan. Can't get much better than that, all things considered. From the start, I didn't expect miracles or sudden "cures." My goal has been consistent -- to maximize my survival. I've had some down times, as we all do, but for the most part, haven't had what I'd call a year spent "sick." I'm just glad to be here as long as I can. I try to look every day straight in the eye, and go forward. God bless all of you for being here and posting and sharing your experiences, knowledge, and wisdom. Di

Jen, I have no "experience" to speak of, having only 1 week of Topotecan behind me. I'm in a study for FDA approval of the oral form, so I took the pills last week, off this week, and another 5 days of pills next week, then scans the next to see if there is any progress. Not that it will stay this way, but I just got back this morning from having my blood counts checked and after 1 week of Topo, the Onc. says my counts are terrific -- never would guess something was trying to zap them! This week, it's my job to fill up with proteins, drinking lots of chocolate milk with Boost in it, and stuff like that. With any luck, I can hold even and they won't go too low, but one never knows. My weight loss finally tapered off too -- I'd been dropping 8-10 lbs a week (needed to lose weight, but NOT that way!) and I only lost 4 lbs in a little over 2 weeks. I felt lousy only one day, and then figured out a better schedule -- getting up really early and eating yogurt and a banana or something like that, then waiting at least an hour, then taking the Topotecan pills. During the middle of the day, I'd just drink the chocolate milk & Boost (yummy!), then could eat later in the day with no problem. (I'm not exactly having N&V from this -- it's the anorexic element of this disease that I wrote about previously that was causing me problems with food, but I think I'm through the worst of that now.) So, I feel better about it all mentally now, and that is helping the physical a great deal. I am full of energy today -- was glad to get back to work after a long weekend, and somewhat back to "normal." Keeping in the back of my mind at all times what the Topo is doing FOR me. Di

Good for you -- hooray! You are my hero of the day! (And, being an oncologist, he didn't know this stuff before you pointed it out, because ... ????) Di

I LOVE IT! We all need double doses of this - at least daily! Bring it on ... Di

I didn't have all that, but the PCI I did have sure knocked the wind out of my sails for a while. While I was having it, it was just freaky to put on that mask every day (groan) and see the "lights" during the treatment, but no side effects that I could tell. Shortly after the treatments ended, I'd say within 2-3 weeks, the worst fatigue came, and my hair fell out. Loved the bald head (still do!) and I just learned to cut my day a little shorter, go home from work, and rest every day. I've done that ever since. I come in earlier and leave early so I can have some sofa time every evening! Glad to hear from you -- what you write just "sounds" like it has a big smile behind it! Di

From a recent round with only one large gallstone, I can relate to how icky you feel. I just kept getting sicker and sicker for a month, until they finally sent me to a GI doc who fixed it right up with an ERCP procedure and (thankfully) no surgery. It was mostly the stopped up bile duct making me sick, but it was the sickest I can recall ever being in my life. Hopefully you will feel a TON better once they get this taken care of. Good luck with the port too -- so far, my veins are holding out and aren't being abused so much, but it seems as though everyone wants to stick you in the hospital, no matter how many were there before! And at the oddest times. Oh well. Let us know how you do -- best thoughts to you. Di

Well, heck. There goes my plans for a midnight giant belly dance in your back yard -- complete with little pink drinks and a pig with an apple in its mouth. (I will NOT have an apple in my mouth, just to avoid confusion.) Guess I'll put that off! Seriously, you hang in there. It's about all I can do to keep from making an appointment with the Oncologist I started with (the one I dumped) next week just to show him that I'm still upright after a year. He figured I was a goner from the start and always treated me that way. I love how you refuse to let people get you down. Keep it up! Di

No, it isn't an obscene expression or an entry in the "What to tell the ACS volunteer" person. It's one of few medical terms I happen to remember! Fever of Unknown Origin. Sometimes they will say it as "Fever of unknown etiology," but FUO used to be fairly common. I was plagued with that last week -- Tuesday, Wednesday, Thursday nights. Feeling fine all day, then around 6:00 p.m. - WHAM. Either burning up or having chills. If I got to it quickly with Ibuprofen, it would be gone in an hour or two. Thursday night, it kept coming back. Fortunately, I could call the Oncologist's office on Friday when they were all there, and hopefully not have to wait 9 hours like I did on a Saturday last year when I had to call them. I only had to wait an hour and a half for someone to get back to me this time. wow. They tell us to call if our temp is 100.1 or more, and mine would have soared past that had I not been on top of it. So, thankfully, they had me take Amox-Clav (generic Augmentin) rather than me having to pay for an expensive new antibiotic. I have a huge bottle of the Amox Clav left over, and was glad not to have to pay for something else! The fever goes right away. Zap. I have a few ideas as to what it may be, one of which I won't speak of in mixed company, but suffice it to say it resulted from the bile coming through my kidneys and out in my urine before they fixed the gallbladder & bile duct. Ahem. The other is that my body may be trying to murder the temporary stent he put in there (something he expected). Tomorrow is my first 12 hour day on the Topotecan oral study. Will let you know how that goes. Just wish I could eat way more than I can now, so I can help keep up my blood counts and not have to rely on drugs and more drugs for that too. Later!! Di

Ginny, thanks so much for the update. When I think of Betty, I think of her being peaceful with people by her side who are special to her. I hope that's so. Betty -- prayers and good thoughts are with you in abundance. Di

"Could be anything." Wow. One more reason to be impressed with the medical industry. IMO, I'd ask a doc and have some blood work done to make sure you don't have a sodium problem which can occur with SCLC -- especially before taking a diuretic. If the doc says "could be anything," oopsie. Wonder who might know something about medicine around here? My low sodium was the clue that I had SCLC. Had I taken something like Lasix, it probably would have killed me. If you were Aunt Philameena instead of Uncle Doug, another possibility might be menopause. So, there ya go. Di

Good one, Katie! Becky -- I'm going to borrow yours if you don't mind. It's great! (That is if I can be so kind when the time comes.) Di

I'm with Connie on this one. Now and then I'll check out at Walgreen's or somewhere like that and they ask me to give an extra $1 to the ACS. I tell them I'd be happy to once that organization recognizes ALL forms of cancer. Grrrrr. Di

My response would be: "Oh, and I "guess" you were never taught to make such assumptions about other people, much less to have the grace and good sense not to say such things that you have no knowledge of." What a jerk. I think I would have told them I'd keep my money and time and energy and donate it elsewhere until they can educate the people holding these events for them. DI

Just about all the docs I see tell me that it is NEVER inappropriate to seek a 2nd opinion. If they didn't believe that, I'd be dumping them in a heartbeat. I recently went through week after week of being sicker and sicker with a gallstone and stopped up bile duct while 2 docs stood around wondering if there was cancer in there somewhere. Well, so what if there was? Were they just going to let me turn as yellow as I possibly could and die from biliary sepsis instead of cancer? DUH. Next time I'll know better -- they either treat what's wrong with me, or I go to someone who will. I think the problem is that there is sometimes a fine line between persistence and becoming such a nag that the doctor dumps you! I try to stay on the right side of that line, although it isn't always easy. Over time, I think I've convinced them that they won't be messing with me like that, and that I keep up closely with my condition -- including keeping copies of everything, so that if I need to take a walk and see someone else, I can do it quickly. Not that I'd suggest you do this, but I think what I'd do is to ask this doc to refer me to someone who CAN tell me what's in my chest if he can't. You know your relationship with this doc and if this would help or not. Whatever the case, I hope it is resolved soon and that you find out it's nothing to worry about. Di

Well, yes. Had to bribe the Onc. yesterday to not send me across the street to the psych hospital when I showed her a big smile as she read my results. First things first. Biopsy confirmed SCLC mets to my liver - about 3 "tiny" spots, meaning (in her words) that we're not talking about big tumors or masses here, just a few little spots. The largest has to stretch to be 3cm. They are also quite new. Ultrasound says that I have good flow through my portal vein, even though there is a spot that shows some gunk. Will just watch this for any change, but no blood thinners for now. So, why the big smile? I bet most, if not all of you know that. Because it was not the worst case scenario coming true -- it was not new liver cancer, it was not new pancreatic cancer spread to the liver. It was the same beastie I've been after for almost a year now, trying to gain a foothold in my liver. Ain't gonna happen as long as we can smack it down with some good drugs. Next week, I start in a study for the FDA with the new Topotecan in oral form. Topotecan IV has been around a long time, and they finally developed it in oral form (pills). They were *this close* to FDA approval, then made a minor change to the pill, so the FDA wants a study to show that the "old" drug is as good as or better than the "new" drug. I'll start next week on the "new" drug, then a week later with the "old" one, and will have 5 days of pills, a week off, then 5 days of pills, week off, etc. For how long, I don't know yet -- will find all that out next week. They will scan in the middle of it, and check my progress. The Onc. and research staff says Topotecan produces "amazing" results, and the pill is no different -- even better in some cases, because it stays in your system longer. The best thing as far as I'm concerned is that I will NOT have to have a port - yay! They both felt like I'd not have a problem with this, since I tolerated the Carbo/Etoposide so well the first time around. The thing to watch is the blood counts, and I'll be having that checked at least weekly whether I'm taking the pills or not. So, I was already starting to feel much better after my gallbladder episode, just a little better every day, and I took this as GOOD news, because I'd been so sick I just couldn't get past the thought that it might be a new liver and/or pancreatic cancer. I'm eager and ready to get started on the Topotecan next week, and to help out with this study. To steal a phrase: Let's roll! Di

I've always had Elvira like nails -- they would grow as long as I'd let them, and are really tough. It takes a chainsaw to cut my toenails. (Well, not really, but you get the idea!) I didn't notice a difference during chemo, but wasn't really paying attention I guess. The Pulmonologist told me that it was my nails that helped tip him off to my cancer at first -- wasn't getting much oxygen into my system at the time. It may be the same with mine as yours, except you notice a big difference and mine have always been that way. I don't have a clue. Di

If you have the PAX network on your cable system, tonight is the "Cold Turkey" show. I think 8:00 central time, but am not sure. This show can be really funny at times, really sad at times, and sometimes inspirational. It gives an "in yer face" look at addiction though -- from people in all walks of life. They are gathered away from home and not told why, then are informed once they arrive that they will all quit smoking. Ack! Through the episodes, some leave, and the remaining contestants begin to open up and really discuss their addiction and reason(s) they really would like to quit. A few have walked off once they found out what was going on. If you still can't quite wrap your mind around the concept of nicotine addiction, this show might show you inside some people who aren't close to you, and how very powerful it can be. One warning though -- it can be what you might call brutally honest. They don't often sugar coat their addiction and after a while, they stop trying to pin the responsibility on everyone else and put it into their own hands where it belongs. I can't say everyone would "enjoy" this show,but it does give a good insight into the issue. Di

Wow! How time flies ... I'm right behind ya. Couldn't imagine a year ago that I'd still be alive and kicking, much less meeting all these new people -- could you? Amazing, huh. You're a trooper. You've been my biggest inspiration in all this since I first came here and read your posts with their honesty, the accurate and VERY helpful descriptions of the things you went through, and most of all your terrific sense of humor. I had some grim, almost morbid, preconception of cancer survivors and support networks, and I came here and found out (thankfully!) I was way wrong on that count, largely thanks to you. Even in the tough times, you shine through. Drink whatever you want and celebrate this wonderful thing we call "life," even though it isn't always the most pleasant thing we might imagine for ourselves. You're due some really good days -- I hope you start a big long string of them NOW! Much love to ya, Di

I took Etoposide in capsule form for my initial rounds of chemo with the Carboplatin. Other than the fatigue that seems to just go along with chemo, I didn't really have side effects from the chemo. Since I was taking the Etoposide for 10 days after the IV Carbo, I would assume that I might have noticed a difference in the two and how I felt, but I didn't. I would start the Etoposide the day after the IV Carboplatin - one 50 mg. capsule, then 2 - 50 mg. caps the next day, then 1, then 2, alternating for 10 days -- a total of 750 mgs over a 10 day period. I'd heard concerns that the caps weren't as good as the IV, but was shown research data where the absorption rate is very good with the caps -- actually a little above that of the IV, because it sort of happens once, runs through your system, and it's all over. Taking the pills 10 days in a row keeps some of it in your system, or so they said. Keep in mind that everyone reacts to chemo/radiation in a different way. Because I had such good results and almost no side effects doesn't mean that the next person who comes along will have the same experience with it. Much luck to you, and many good thoughts to both you and Deb. Remember too that the "survival rate" only counts for her. No reason she should care about everyone else's, just hers. Try to survive as long as she can, and that is her rate. Di

I have lots of those -- results. The only problem is that they just lead to umpteen more tests, and they don't really tell much. Well, today the Oncologist seemed to have about enough of that, and we're going to biopsy (FNA - fine needle aspiration) one of the spots on my liver that appears to be new, and is the largest of the lot at barely 3 cm. My pancreas is much improved since the biliary sepsis was fixed, so that's good. They suspect a clot (portal vein thrombosis) and will see what that looks like with Ultrasound. Tommorrow I'll have the FNA followed by the US -- the woman checking me out today really worked a miracle getting both these done on the same day and so fast! If the US confirms a clot, I'll be on blood thinners for a while. If the biopsy confirms mets, then it's on to Topotecan for me. Unless, that is, it is a new cancer and not mets which she doesn't think is very likely, but you never know. I think she's at the point with these radiologists where she's saying "ok, you guys keep pointing out "maybes" on all her scans, so PROVE IT!" Guess what - so am I!! So, I'll know about the ultrasound probably Friday, and the biopsy next week some time. I have an appointment Tuesday to see the oncologist for results, so will hope she has them by then. This not great news, but I feel MUCH better. Physically, my stomach stuff is going away after the gallbladder troubles, and mentally, now that there is a PLAN, I feel lots and lots better. Will let you know when I know something. We're not talking dire circumstances here, at least not yet, but some stuff that has to be dealt with, and is at a very early stage. So, that's good news, I think. Di

I'd just add a 4th to Doug's list: Continuing to smoke means you continue to put the same carcinogens into your system. You know how your body reacts to them (cancer), and as long as they are still being introduced on a regular basis, it is possible that new cancers will form while the old one(s) are being treated. Di

Dani, I don't know why either, except to say that it's about addiction and not necessarily common sense. A friend who works with a hospice tells me that a nicotine patch is quite common with some of their patients to avoid what you described may have happened to your sister. I can easily step back from a situation and find all kinds of reasons for people to stop whatever their addiction might be, but they are the ones who have to take the initiative -- and for their own reasons and in their own time. Di

I agree, if he gets through this battle, he may be setting himself up for another battle down the road. (Kim) With all the many reasons to quit smoking when I was diagnosed, the most chilling and effective was when this wonderful Pulmonologist who had (literally)saved my life said so cavalierly that the tumor he'd just found wouldn't be affected, but if I continued to smoke, I'd be working on more tumors. One thing many people think once they are diagnosed with cancer is that they can't/won't have another kind of cancer. Wrong. There are people on this board who have both NSCLC and SCLC. Survivors of other kinds of cancer and now fighting lung cancer. Experiences are all over the board. No, quitting won't guarantee anything, but it sure won't hurt to help the odds as best you can, IMO. Di

LOVE IT!!! I'd love one to wear to see my old Oncologist, and laugh in his gloomy face. (The one who told me from the outset that about 8 months survival would be a good thing, and who insisted - wrongly - that my adrenal glands were involved and put me through 9 kinds of heII over it.) The caner center where I go is supposed to have a reunion -- soon, I think. I'm going to stop by there if for no other reason than to let them know I'm alive and kicking. So far! Fay, I'd expect nothing less from you. You go!!! Di