SDianneB

I'm doing Topotecan orally in a study, but are you talking more maintenance type chemo? I think Addie is taking Topo as well, but through IV or a port. I took Etoposide orally too (2004). I was really sick the first 2 cycles, but I don't think from the Topo. I'd been through all that mess with my gallbladder, and when the symptoms started coming back, they really didn't pay much attention to me until I insisted they run a liver profile with my lab work. THEN they believed me! At any rate, I gradually came out of that (no appetite, constant stomach ache, etc.) and feel really good now, and other than the fatigue and low blood counts, not really any side effects. I just finished the 3rd cycle yesterday, have 2 weeks off, and will have cycle #4 then, and probably another scan to check progress. As to your other post about fevers? I have strange fevers now and then, and all my lab work shows nothing. The Oncologist says it's probably from either the cancer or the Topo, or maybe both. I'm thinking they don't know what the heck it is, so the cancer and Topo might be good places to lay blame! I'm glad you're still in there with the chemo and fighting this scourge. You have my very best wishes, as always. Di

God bless you all. You've been so open and honest about posting here and sharing your life with us, and we get to look at the face of that sweet baby every time you do. Thanks so much. I'm very sorry for the loss of your mother, but at the same time glad she is out of pain and at peace. Di

I've been wondering about him lately too. I was "assuming" he wasn't well, or we might have seen him a time or two on the nightly news. I hope that's not the case, and he's just staying in and trying to heal. Thanks for the info. Di

I guess I'll have to inform the hospital where I get my copies of stuff done there. Their policy is that they will send them directly to another physician's office, but if I request them and pick them up - for any reason - there is a charge. Interestingly, they get all kinds of stuff for me whenever I check in for something, and I have to initial/sign 47 pieces of paper about privacy rights, then when I got copies of my records ($195.00 the first time around) about 20 pages were someone else's records. So much for privacy. I at least got a credit for the extra copies. Also, some of the places I go want to see a drivers license, and then make a copy of it, and I've stopped letting them do that every time. I've told them that if they have it once, they can pull out their record and make sure it's me, because I'm not copying it again. (That's a good way to suffer identity theft, and we think how my sister's business info got into the wrong hands a few years ago just after she spent a week in the same hospital.) At the radiation oncologist's office, they took their own picture and it was on the front inside cover of my chart so every time someone opened it, they could ID me quickly. Smart. The others are just lazy, but I'm not playing their games any more. After all, who is going to steal someone's identity and undergo chemo, radiation, or one of the other procedures we all have to go through? Only someone verrrrry strange! Di

Vanessa - I think that will help you a great deal. Sometimes it will seem like it's more trouble than it's worth, but then will come that ONE time when having all those records helps a lot! Beware though -- some places will try to charge you an arm and a leg or two for copies, yet they will send them to a doctor's office for no charge. (Go figure - the one place who could afford to pay for them 25 times isn't charged, and we pay through the nose. ) When your mother goes for scans, be sure and tell them when they start that you want a copy on CD to take with you. If they make you wait more than 20 minutes for it, tell them you'll come back and pick it up. That has helped a few times too, just to make sure that radiologists have the most recent scans as a point of reference. Good luck!! Di

Vanessa, I went through that same ringer, and finally decided that I'm in charge! Seriously, I keep copies of all scans and tests, and a comprehensive history of my lab results. I know better than to "just call us anytime" like the Oncologist's office says, because it takes hours for someone to even call you back. I figure if it's that bad, I'll go to the ER and have them paged. To heck with their lousy answering service. I got tired of being shuffled around from one doctor to another, namely when I had a gallstone and a stopped up bile duct and was miserable for weeks -- way longer than I should have been. Now, I stay more watchful about who is doing what, and make sure that I always have copies of scans and tests (I keep this all in a notebook) in case I need emergency care or have to go elsewhere. Much luck to you -- making your way through the medical care maze is something we don't always count on until we're already knee deep. I think once they know you are paying attention to details, they may pay more attention themselves. My best to you and your mom. Di

Golly, Pat. I was really wondering how you knew all those things about me. I'm with Kasey -- that's called "human." I found myself so engrossed over a week delay in resuming chemo due to elevated bilirubin, didn't touch base with my friend like I should have, and then found out her house burned. A total loss. Now,just think of how many smacks I'd like to give myself for that? Sheesh. You're a trooper. No apologies necessary at all from my POV. Hang in there. Di

When I had chest radiation last year, their office had a part-time nutritionist on staff. She was a godsend and helped me a great deal. I found out later,and basically on my own, that the regular oncologist's office has access to nutritionists, but I guess their patients have to request them. We are such unique critters though. They kept telling me to try gravy and sauces to help things go down while my esophagus was irritated, but those were the very things I did NOT want then. Go figure! Try asking at your doctor's office, oncology office, hospital, or wherever you are being treated. Surely there is some kind of help available. Good luck! Di

I remember not so very long ago that we didn't have these kinds of options. At best, we could count on having to stay in the hospital indefinitely, or at home with just family to care for us, and no real relief in the form of respite care or hospice care. One of the first things I did when diagnosed was to investigate hospice care in close range. My preference, of course, is to stay at home with hospice care because of my kitties (!), but mainly because I'd just be at HOME. IMO, there are worse things than death or dying, and we usually tend to see people as "dying" when such a milestone is reached. I tend to see it as entering another phase - the one that we will all go through at some time or another. I hope for no pain, for comfort for your mother, and for relief and comfort for you and your family during this difficult time. I believe the hospice can be a real partner in making that happen for you all. Best wishes, Di

My thoughts about survival are about the goal I set for myself when I was first diagnosed -- to maximize my survival. To survive a week, I must survive a day - 7 times. To survive a month, I must survive a week, 4 times. To survive a year, I must survive a month, 12 times. And on it goes. I don't really stop to count days or compare myself to a set of statistics, because you can find statistics out there that pretty much say what you want them to say. Cancer is a huge, life altering event, to say the least. Try concentrating on keeping yourself in the percentage, whatever that is, of those who survive. Just make it 1 more day than some say you "should," and you've already beaten the stats!! Sorry you have to be going through this. Please try not to take every single thing you read or hear as fact. You'll find your way just as the rest of us do -- one step at a time. My best wishes to you. Di

Kathi, I was so sorry to have read about your dad. I know how much you loved him and will miss him. God bless you all through this difficult time. Di

I'll echo the others! I've never had a doctor tell me to or not to work -- they always say to do what I feel like doing. When one tries to say do this or don't do that, I start asking questions -- why? Why not? Like that. I make them give me an answer that makes sense - and that informs me so that I can make a better informed decision. Much luck to you as you continue to fight this beast. Di

Lori - be strong! I'm going through a similar thing with my sister right now. The house I grew up in has been in my name since my dad died in 1975. Now, we've moved my mother (she'll be 92 in August!) to an assisted living facility where she will have an apartment in probably a month. I'm more than happy for my sister to handle the sale of things inside the house, because she has a friend who has done estate sales for years. But, my sister is 16 years older than I am, and as usual tries to run my life for me and control everything in sight. We have a potential buyer for the house, and I would find out now and then that my sister was talking to the realtor directly and I was being left out of the loop. Finally, I pulled myself up by the bootstraps, and informed the realtor that the contract we signed has MY name on it - not my sister's. When we get around to selling the house, it will be ME giving the ok (or not) to any offers - NOT my sister. So, she could take it or leave it -- and if she continued to try and work with my sister, I would be terminating the contract and reporting her to the licensing board in her county. So there. Finally, she gets the message. At least I hope so. Also had to let the sister know that if I didn't have all the information and was left out of the loop when she had talks with the realtor about this, she might be really embarrassed when I fail to do what she thinks I should. In short, STOP with the controlling thing and do your part, and I'll do mine. It's difficult with families -- how well I know that. I come from a different place now that I have myself and my health to concentrate on, so if they think I'll be intimidated by them after dealing with cancer, they'd best think again! Hang in there. Do what you can to make it work the best for YOU. Look out for yourself. I felt much better when I began to take back control. It gave me a sense of power over something at least! My best wishes to you. Di

Cindi, so far I've found that when I'm feeling better - meaning more "normal," that usually means improvement of some kind. Since I was never prone to illness much before the cancer came up, I really didn't have the usual symptoms. Now, I pay more attention to what I feel and how I feel. It seems to work for me. Hang in there for the next scan. Hope it all turns out well. Di

Oh, good grief. This is why I dumped the primary care doc I had -- well, one reason anyway. He's been friends with my sister for a long time, and if he wanted to know how I was doing, he'd call her and not me. Finally, I filled out the form in his office to undo the authorization to discuss my medical treatment with her, but he still did it. That, and the fact that he was extremely rude to me when I was so sick a year ago. He was out of town, I called on his cell phone to see if he could give me the name of a doctor to see, and all he could do was to be rude, so he's out of the picture now. I told my sister that if he asks about me again, feel free to tell him I said "bite me," and I mean that in the most tacky way. My mother is convinced that my sister is "taking care of me." Not so. I take care of me. When and if my sister shows up, she stays about half an hour, tells me what to do and how and when, then leaves. If there is any serious taking care of called for, it will be home health care or hospice, that's for sure. One thing is for sure -- you really learn about people when you have a crisis, huh. Di

I agree wholeheartedly with Ginny: "And don't be shy. Ask all this company for help. You can't do it all, remember, you can't do it all." Maybe you can come up with some kind of schedule that puts different people in charge of cooking on certain days, and let everyone know what your mom can/can't eat. There is no way I'd go to stay with someone for that long and not expect to do my share of the work. The visitors can be a really good thing or a really awful thing, depending on who is willing to dig in and help out. You'll wear yourself out trying to take care of everyone in addition to the stresses you are putting up with already. Another trick -- when you think you've had 'enuf, just take a powder. Go somewhere for a few hours. Leave some food fixed for your mom, and leave the others on their own for a few hours. I guarantee they will figure out how to get something to eat! Take care of yourself, ok? (You can also send me that sweet baby while you have a house full of people, but something tells me you'd eventually want her back!) Di

Good to hear from you Karen, and that you are staying busy and getting through things. I'd say that I wish I were there to help you move, but that would be a big ol' lie! I hate to move - yuk! Take care of yourself. Don't work too hard -- makes me feel guilty! Di

Dean Carl, like others around here, you have it backward. Thank YOU. You have a marvelous spirit that lets you enjoy and appreciate the wildlife around your home, then tell us about it, and all the while sharing your own experiences with us. A spirit such as yours is easy to love and appreciate and to treasure. Di

I'll never forget moving to Nashville from West Texas. A friend is talking about the "eyes" on her stove. She leaves the room, and I am intent on finding the "eyes." In the south, the burners on a stovetop are often referred to as "eyes." Who knew? Also -- dressed eggs (deviled eggs in Texas - or closer to deviled "aigs") I would have thought Texas would have been closer to the souther states in these kinds of things, but nooooooooo. I've embarrassed myself more than once since living here! Di

Donna -- The first time a handful of hair fell out of the left side of my head (had been losing little bits at a time until this chunk!), I wasn't even sure it was all going to come out. Then, in less than 10 days or so, poof -- it was gone! Except for a stripe down the middle of my head -- it was my mohawk do. Not good, so I had the hairdresser trim things up. When it started coming back, it seems like it took forever, and it was like peach fuzz. Now, it's growing back and looks/feels like real hair - yay! Just the past week, I've been going without my little red cap, mostly due to the heat, but it's really enough hair now for a cute little short summer style. I kept my scalp washed, massaged it a bit in the shower, and kept using the same brand of hair products I've used forever. Don't know if any of that helped or not, but it sure felt good! The Rad. Onc. told me it was possible to have permanent hair loss with WBR or PCI, but also said he'd seen very few cases of that in his time, and he's been practicing for quite a while. I guess we are all just different in this regard too, as with side effects of any of the treatments we take. Di

Ditto what Jim and no doubt others here will tell you -- we are patients/human beings, not statistics. Even so, if there is as little as 1% chance of survival, that's the one I'm shooting for. Someone has to be in that 1%, right? Sign me up. My goal since I was diagnosed a little over a year ago was and still is quite simple -- to maximize my survival. That may mean another day, another month, another year, another decade, or whatever. Doesn't matter. I fight the battles I need to fight based on what I need to do at the time. My best wishes to you and your family. This is difficult at times, but not impossible. Hang in there! Di

How wonderful! Happy, happy anniversary to two wonderful people. Thanks so much for letting us know about this! Di

What a cutie patootie! Over the weekend, Tootsie & Button and I had squatters try to move into our screened in back porch-- a mating pair of finches. Well, at least they were trying to mate. They decided to come in through a teenie hole in the screen and build a nest in my shelves. No way! I finally got them out with both kitties watching eagerly from inside the house, just waiting for their chance to either help me get the birdies to go out the door, or to have lunch. (I shudder to think which.) When I propped open the door to let them out, the other one decided I was making it easier for them to come and go, so she came in with another mouthful of nest material. Nononono!!!!! I finally got them out, then let Tootsie sun on the porch for a while so they wouldn't come back. Early Sunday morning, guess who was back, singing up a storm! Ha. Finally got him out and went back to work patching holes in the screen, and set Tootsie to guard the porch again. Tootsie seemed eager enough to get at the bird, as if I'd have let her that close, but my bet is that faced with a real live critter, she wouldn't have been so brave, being the little spoiled rotten indoor princess that she is. Button, on the other hand, would make hash out of the bird in seconds. I think if it's larger than a bug, Tootsie will leave it to me to handle. Such a brave protector. I think time and time again what I would have done or how I would have made it through this last year without these sweet kitties that I have. They have been the best of friends and companions each and every day. They really get into this "rest" thing too! Thanks, Cindi, for sharing pictures of this little sweetie. I wish I could have dozens of animals -- I do love them! Di

Addie sez: "DON'T MESS WITH THE CANCER LADY!!" I think we should have shirts made with this on them in HUGE letters! I love it. You? Deficient? Ok, so who are you, and what have you done with our Elaine? Snap out of it! I'm with Addie -- ask nicely, then request more forcefully, then start demanding if you have to, but this information is YOURS to have. I'm in a battle with an egghead at the CT/PET imaging center right now -- have tried 4 times to pick up a copy of a CD of my last scan that he hasn't made, keeps making up excuses every time I stop by, etc. Finally, I asked the receptionist to just mail it to my home and she said ok. Egghead calls and leaves a message that it's against their policy to mail those to home addresses, so he's send one to my Pulmonologist. Huh? I specifically asked for them NOT to do that, since the Pulmonologist wants his patients to bring them with them -- otherwise, they get lost in his office. So, I'm back to egghead. And his policy. And so I ask him if it is their policy to make people come by 4 times to get their CDs and he says no. So, if he's already broken that policy 3 times at least, why not break one more? Fortunately, the Oncologist's office has major influence over them, so one of the women at the checkout called and I think it was such that egghead probably couldn't sit still for at least a week. Elaine, this gets us down. I know that very well. I know that the least little thing can really set me off in either a fury or a backwash of tears. I just try to pay attention to my own body, and when I need to, insist that someone pay attention to me. I can make a real pest of myself until they do, as you can well imagine. You can do this. Take the beast by the horns and start dragging it around rather than letting it drag you. You're one smart lady, and I give odds that once they figure this out, they might not be so obstinant with you. Take care of yourself. Di

I'm with you, Kasey. Is she just a little doll or what? Di