SDianneB

I think we probably all felt that way at first. This is still relatively new to your family, it sounds like. It took me a while to settle into the treatment, and I know for my friends & family, it was a really scary time as well. You will often hear of this disease referred to as a roller coaster -- because of all the ups and downs, both physically and emotionally. There are some amazing caregivers in this forum who can share with you, and you may want to take some time and read through some of their posts in that forum. One thing is for sure -- it definitely takes over your life, and figuring out how to make all that fit isn't always easy. My best wishes to you. Di

I had chest radiation and chemo at the same time, and about the only side effects I had were the esophagitis, and my skin really dried out -- almost a burn, but not quite. I used a product called Aquaphor that they recommended, and it worked really well. The best thing though - and this was true on my face/head when I had PCI too - was A&D ointment! It was very soothing, and very gooey! It seemed to actually help with the healing more than the other items. Just keep at it -- these tumors can be pesky to get rid of. My best wishes to you. Di

Oh, man. I've been so fortunate the 2 times I've had to go to the ER to see really good docs. Even so, I keep copies of all my scans, reports, labs, etc., in a notebook, so when/if they need to get me to ER, they at least have that to refer to -- especially over a weekend. Your mom is fortunate to have you all helping her through this. I agree that you should write to the hospital Administration and relate to them everything that happened. If you have a County Medical Society or something equivalent, copy them on it too. My best to you all. Di

Mary, that feeling good is worth a lot, huh! Fortunately, I have few "bad" days, and as long as I feel good -- feel decent even -- it gives me the motivation to keep at this survival thing! You hang in there, and continue to feel good! Di

Dontcha just wanna scream when those "spots" turn up? I sure did. But the important thing is that they were found, are small, and you're on top of them with treatment. I hope the treatment goes well for you. Di

Fay, that's wonderful news! We had so many people come here from the hurricane areas -- it was so very sad. I'm glad your relatives are ok, even though I know their loss is devastating. Di

Sonic - salad with chicken, fried or grilled, and a BIG limeade - yummy! Di

Nina - I can't really say I've had a bad time with side effects from this oral Topo. I have fatigue, as usual, and like most people do from any kind of chemo, but I'm managing that fairly well. I take the pills for 5 days (5 mg. per day, total of 25 mg. over a 5 day period) and then have 2 weeks off, then 5 more days of pills, 2 weeks off. I just started cycle #7 of this. My counts have held up amazingly well throughout, and once my gallbladder/bile duct problems were solved, I've had no more tummy problems. I have the occasional ache and pain, but I'm 52, so that's somewhat normal - ha! Honestly, I think that if I had to take 2 more days of pills I wouldn't feel as good. This is because on day 5 (which falls on a Saturday) I'm at home from work, and I veg out all day. By Sunday, I'm starting to bounce back. By day 5, I think the fatigue begins to catch up with me. That, or I'm just lazy all day because it's Saturday and I'm off work! About the only odd thing I've noticed is that when I'm taking the pills and for a few days after, I'm a little burpy. Other than that, nothing to speak of. I'm not taking any other medications, so if I have any strange side effects, we know it's from the Topo. I know many people have real problems from Topo, but I'm apparently not one of them. At least not so far. I'll have another cycle after this one, #8, and then another scan to check progress. The Oncologist says that as long as I tolerate the Topo well, and it continues to work, we'll just stick with it. I'm for it! Di

I didn't really have throat irritation, but did have esophagitis and some irritation there caused by the chest radiation. They suggested that I sip on Maalox, and I did, but found that popsicles were really wonderful! I liked the cold, and the flavor (strawberry, banana, grape)wasn't harsh and didn't irritate my esophagus going down. They are also a good source of fluids and you need more of those during radiation therapy, I'm told. Some of the others here will have suggestions as well -- the best thing is finding something that works, and stick with it! Di

LOL, Fay! The last time I had an ERCP procedure (to put in the permanent stent in my bile duct) there was a room full of extraneous people! The hospital had just bought a new x-ray unit (fluoroscopy) and a team of people from the manufacturer stay with it for a while to help get the room set up and the machine calibrated correctly. I worked in a Radiology department many years ago, and this was the case then. It's probably more common than you'd think. Di

Joyce, I'm so sorry for what you and Steve are going through. I detest this disease. I believe that for each of us who gets this disease, and lives to tell about our experiences with it, there are at least a dozen who benefit. So, a special thanks to you for sharing your experience. I will keep you both in my thoughts and prayers. Take care. Di

Had my Oncologist visit yesterday after another 2 rounds of Topo had been completed, and to get the results of the CT scan I had last Friday. I'm good to go! She says I'm their "star pupil" in the oral Topo study I'm in! I'm happy to oblige, believe me! Lab values are good - almost normal, amazingly enough. The only really low one was the WBC, and it was only a tad below the bottom "normal" range. As to the scan, of what was there, it's either the same, decreased, or gone! And, the biggie - nothing new! YAY! This is always my main worry -- that they will see new things pop up, but so far, the Topo seems to be holding things at bay. The doc says that since I'm tolerating this so well, we're going to stick with it, 2 cycles at a time, then scan, exam, etc. My gallbladder was a little distended, so that may mean another stone has formed and is trying to block the duct, but that's easily repaired if that's the case, so will just watch that over the next week or so, and check lab values next Tuesday. All in all, she gave me another "A+" exam. I was very much relieved, because I kept wondering how long the Topo would be effective, was new spread going to begin to show up, and all that stuff. So far, so good. The reality is that this disease more than likely will get ahead of me, but for now, I'm happy to be on target with my original goal -- to maximize my survival. I still feel good, all things considered, have continued to work FT the entire time since I was diagnosed with the exception of some time off for ERCPs x 2, and a day here and there. Life is good. Di

Tough question - thought provoking! I guess I was much like others, in that I started searching everywhere to find out about other people who had SCLC. The first Oncologist I had didn't give me more than about 8 months to live, and here I am, 16 months later, still fighting to try and stay ahead of it, but feeling pretty darn good, all things considered. At the time though, I just wasn't going to accept Dr. Gloom & Doom and his predictions, so once I started learning about this disease, I dumped the old stereotypes and I dumped him. I came across this forum not too long after I was diagnosed, and enjoyed reading the posts. Soon, I chimed in, and the rest is history. The simple answer, and the one that (if you think about it) makes the most sense is this: I'm here because I want to be. Di

Lucie and Don - you continue to inspire us all! Lucie, you are forever my hero. Take care, the both of you. Di

I was awake when I had a colonoscopy, but had an epidural, so had NO idea what was going on down there! Actually, they tell me that we all exchanged dirty jokes the entire time, so at least it was entertaining! Those are funny. I thought colonoscopy would go better with "no comment," but those are really funny! Di

Oh, of course not. You mean you are fearful in between scans? HA!!! Of course, the real answer is that we ALL do -- even the angels who call themselves our "caregivers." We all feel that, I think, and we just express it in different ways. I have had a LOT of scans over the past 16 months, and as my Pulmonologist says, "your future will include a lot of scans!" I got it. I'll do it. But I don't know if or when that edge feeling ever goes away. I will say this -- I had a CT this morning, the one they do after every 2 cycles of the Topo I'm taking. I didn't dread the scan so much this time as I did drinking that icky barium stuff! Maybe it is getting better -- the fear, that is. As long as I feel the fear though, I know that my goal to maximize my survival is still going strong. Take care. Di

Oh Jen, geez. That IS a mess for you to deal with, huh. Any talk of a liver biopsy to find out for certain what that is? I had a few scans like that myself -- it is, it isn't, may be, may not be, etc., so the Oncologist finally said ENUF and the biopsy told us what we needed to know, and early enough that the Topo seems to be handling it so far. I for sure don't know what to tell you. Maybe if there is a "guru" of some sorts they can copy all your scans and send them for a review -- from start to the most recent. Of course, that just adds one more opinion to things. I've been about ready to do that myself a few times, and the Oncologist says when she does, she sends just the scans and NOT the reports so that the new sets of eyes report what they see and not just parrot what others have said in the past to CYA. I'm sorry you're having so much difficulty. This isn't easy on anyone, but you've had more than your share of bad breaks, and dangit, it is time for it to STOP. I still think of you often and pray that you improve and feel better. Di

I don't know about everywhere, but in this city, there are at least 3 places within walking distance of where I work where you can get cigarettes if you have cash -- cheap, no ID check, and illegal. Just like drugs, these people will give them to kids just to get them addicted, and then make sure they have a steady supply. That started here and in other places when the prices started going up. It's like abortion, alcohol, drugs, etc. -- you don't get rid of it by normal means, because an addict will go anywhere and do anything to get his/her drug of choice. To a politician, it can be made to sound like a warm fuzzy effort to keep these substances out of the hands of young people, but the truth is that they will get them any way they can. Just watch your local news -- see how many times 7-11 type stores are broken into, and most of what is stolen is the cigarettes. That's because they have a good street value -- a little less than what the stores charge, but very cheap or "free" (stolen) to the dealer. The states have more incentive to keep people smoking than to get them to quit, IMO. The whole thing just seems rather convoluted to me. Many years ago, I went to work in a brand spanking new hospital where, believe it or not, the CFO had decided to put a cigarette machine in the lobby with the coke and candy machines. The Nursing Director had a fit, of course, and then the CEO said we should put it there with a sign -- "Free cigarettes - help yourself. We need the business." THUD! The CFO - financial person that he was, saw the profit in selling them. Di

So, as long as there are tobacco products out there, the states will profit in terms of extra money that they do not have to use on smoking cessation programs. Hmmm ... lemme see which route I'd go if my objective were to line my pockets. More taxes, higher revenue, means we need MORE smokers to keep that pipeline going! It just makes no sense to me. Di

My state uses most of their settlement money to balance their pathetic budget! Go figure. Di

That never makes much sense to me either. It used to be called "sin taxes" -- beer, alcohol, cigarettes, etc. Seems to me that if the objective is a smoke-free society, then adding taxes to it and then counting on that money is counterproductive. Also, taking these things to court - especially federal court - more or less pulled them outside the jurisdiction of the states in many cases. I don't oppose the taxes, but the objective should be to try and stop people from smoking, not sell more cigarettes in order to raise more $$. Oh well. A financial wizard I am not! Di

Pat - LOL!! That's a hard one. I think Barbra Streisand, because I'm always so impressed with her voice, her talent as a musician and composer, arranger, etc., and acting, and all the other things she can do. She's an original, for sure. Di

Lynne, you are absolutely correct - there are good -- REALLY good Radiologists out there. "Way back when" I first started working in hospitals, my first job was as a transcriptionist in Radiology. We had some of the finest people - and doctors - I ever knew, and I learned a lot from them and the technicians I worked with in the 5 years I spent in that job. They would often have the patient's doctors come by to look over the films with them, make a phone call to discuss things as they were looking at the films, etc. They were right there, accessible to all patients, no matter what they were having done. I had a similarly good experience with the Radiologist (Interventional Radiologist) who did my liver biopsy a few months ago. He was really wonderful - patient, kind, had a great touch, was good to explain everything, etc. It was very obvious that the people working with him thought very highly of him. Unfortunately, he's retiring at the end of this year. Is it just older ones who were trained differently? I honestly don't know. It's probably just that we are all humans, and tend to expect perfection from doctors when it comes to our health and our survival. Di

Teresa - it might be worthwhile in that it would at least give people clues as to what to look for. I know a lot of people still think that doctors can do no wrong, and would stand on their heads all day if a doctor told them it would help! Seriously though, if people can be honest about their experiences and what they've had to do to change things, I think it might be a worthy endeavor. Di

Fay, this is one of the most disconcerting things I've experienced, and it appears to be the same with you. Mine though has been (thankfully) the other way mostly -- Radiologist seeing "things" that are meaningless, but reporting on them as if they are mets. One internist (filling in for my Pulmonologist on his day off) even had me so scared with an urgency to see the Oncologist because of the "multiple mets" on a scan. The only problem with his urgency was that they didn't exist. The Radiologist had reported just about everything on the film as a met. What those incidents did to me once I got over the paranoia was to make me ask questions about everything. I always get a copy of the reports, so I go over them in detail with the Oncologist. It just seems at times as if you're danged if you do, danged if you don't. I don't know the answers. These people are supposed to be looking out for us, yet how can we trust them all when things like this happen to us? It's a poser, for sure. One thing I know is that you're one smart cookie, and you'll figure out a way through it. Just hang in there -- don't worry so much about what anyone thinks about you. You are in a fight for your life, and if they don't get that, it's their shortcoming -- NOT yours. Di