deruo

Here here! Welcome Patrice. I think I've found a lot more useful information here than I have from our oncologist. After discussions with her, some of my family members have asked me "how do you know all this stuff?". Congrats on doing so well! Everyone here is great and a wealth of information, as well as supportive. If you have any questions, please don't be afraid to ask. d.

I realize this is probably late, and you've already got several replies, but just this week, the oncology nurse told us that the flushing was from the steroid given with the anti-nauseants prior to chemo. She said it wasn't serious, but if it was bothersome, to take an antihistamine like Benadril to alleviate it.

Deb, Thanks very much. You keep me in mind if you need someone to talk to as well! Mom started her second cycle today (as an outpatient). We've got a brand new Cancer Center here and besides being visually beautiful, the staff are extremely caring and friendly. Met the new onc yesterday. The pharmacist at the center today said she sounded much better than last time they spoke, and said it was a good sign. Mom must be feeling better - she went out shopping all afternoon with my sister-in-law! I ended up calling just to make sure everything was all right d.

Thanks Rebecca and congratulations! I think one of the scariest things when learning about SC was reading (in places OTHER than here) how life expectancy was short, months in some cases. Further, even now I'll come across an article and try to avoid parts that make mention of life extension. Happy to say that since I found this refuge here, I haven't gone looking for statistics or prognoses. I wish you the very best, and continued good health! d.

Hi Deb, Your story sounds VERY familiar. I can't tell you about long term survival, but like you, am hoping for it. It took the system here in Ontario well over a month to get a confirmed diagnosis, and then we were told that it would take 2 weeks to get in to see an oncologist. A trip to the emergency room less than a week later, with mom SOB got her started on chemo in 2 days, just last month. My mom is sounding better by leaps and bounds. She starts her second round of chemo this week, and though her hair is really starting to fall, she's got a collection of scarves and a great wig already. No one has told us definatively about radiation yet, but I'm assuming that is in our future. It's great to hear that Kels mom is doing well too. I know that there are a few others here who've been living with SCLC for quite some time. I'm sure you'll be hearing from some of them in short order. I'm looking forward to reading what they have to say as well! d.

Thanks for the heads up Kel! Maybe I'll pick up some soda water tomorrow on the way to the hospital. She's not coughing as much today as she was yesterday, but she says her stomach is so sore from all the coughing she did last night anyway. Sleeping a lot, which is good. Today we just concentrated on getting her to eat - everything tastes spicy/peppery to her and hoping to get her able to breathe without supplemental O2 and still stay above 90. The oncologist told me a few days ago that we wouldn't be doing radiation right away because the "field?" was too large and she is a small woman. So he said we'd re-examine that issue after a few rounds of chemo. Does this sound right to you guys? I suspect we'll be getting the results of the bone scan and brain scan tomorrow. They certainly have taken their time in getting the results - or at least talking about them. I'm not looking forward to that meeting, but trying to think positive about it. A little bit of good news would be nice for a change

Hi all, My mom has sclc and just finished her 3rd day of chemo. 1st round. She's still in hospital (thank goodness!) but two nights in a row now she's been coughing real bad with some plegm (her cough up to now was dry). The first night, they thought it was because of fluid buildup so gave her some laysix(sp?) and a sedative as she was panicking. This seemed to help. In between she had some ventalin to help with her breathing. Last night saw the same thing. Not as bad (no laysix) but still enough to have them give her ventalin and mask her to keep her O2 level up above 90. All this seems to happen at night. During the day shes fine. Is increased coughing with plegm "normal" after chemo starts? I'm thinking this is a sign that those nasty cells are dying off, but don't know for sure. The nurses have been great for the most part, but they've said that because everyone is different, its kind of hard to tell if this is a side effect or if something else is going on. The Dr. took an xray yesterday, but as of last night the results "weren't back yet".

Thanks very much everyone. Mom just had her second day of chemo today. I don't know whether it's the chemo or not, but she sounds a LOT better - breathing easier and not coughing as much. Nor does she sound like she's gasping for air. She's in bed being quite chatty actually. The Dr. said she could probably go home tomorrow but she wants to stay until Saturday, just in case the side effects kick in and she needs help. I know I've been complaining about our med system, but I have to say that the nurses that have been taking care of her are marvelous. If flowers were allowed on the Oncology Floor, I'd take them a big bouquet! I do hope someone can verify something I was told - her chemo dose has been reduced because when they did a kidney function test, it indicated that her kidneys weren't operating at 100%. Rather than risk damaging her kidneys, they reduced the dosage of the 2 chemos. (She's a fairly small woman on top of the kidney thing) My question was "does a reduced dose mean reduced effectiveness of the chemo" or would it affect treatment. The oncology nurse said that it would not. I think I asked the Dr. and I think he said the same thing. (To be honest, it's a blur - and I've been taking notes - but you know how it is...) I marvel at how strong she is. I'm very proud to say I'm her son.

James I'm going through much the same thing you are. My mom was finally diagnosed 2 weeks ago. I'm new here too. Do you know what type of LC she was diagnosed with? I can't add much to what other more learned members here have said. Get her to a Doctor who is willing to help her and encourage her. Don't take "no" for an answer. Ignore the statistics because your mom isn't a statistic. Like the Doctor told my mom, "the man upstairs doesn't talk to me" so I can't tell you "how long". Get a second or even a 3rd, 4th, or 5th opinion if necessary. Finally, I'm glad you found us.

Forgive me if this is in the wrong area, and not exactly coherent, but I'm mad as hell, and tired from getting minimal sleep so far this week. I'm hoping that most of it only applies to the way things are in Canada. I shudder to think that the US system is as bad. I'm all for the Oprah-doing-a-show-on-LC idea. People shouldn't have to live through the nightmare I (and likely many of you) have gone through. Unfortunately, it probably won't be done until someone close to them (the hosts) goes through this horror. I live in Canada, home of "universal health care". I used to be somewhat proud of that. No longer. We've known that there's been something seriously wrong with mom since July, when a CT scan on her abdomen for an unrelated ailment showed a "mass" on the right lung. Before that, her physician discounted her complaint as being "in her head". Further waits for CT scans, a GP that doesn't seem to care because he's retiring in a month), a bronc, biopsies and looong waits for results found us finally getting a confirmed dx in early September. So of course then we need to see an oncologist. Oh, theres at least a 2 week wait for that - even though the referring Dr says it's urgent+++. Other people in the "profession" tell me that 2 weeks is good. The waits in other parts of the country are 3-4 weeks or longer. "You don't understand, she has Small Cell cancer and is having trouble breathing!". "Sorry - we'll fit you in when we can". I tried pulling some strings through an acquaintance who was willing to help, at a hospital an hour away. "Sorry we can't help, but she needs to be on chemo NOW!". I even thought that we'd have better luck crossing the border into the US, and paying cash for help. I'd sell my house if I had to and gladly pay them. 3 and a half week wait. Course that might just be because it's a high profile facility but still! Finally, I thought "to heck with it" picked mom up, took her to emergency, where we waited for 4 hours to see a Dr. and then waited another 3 hours for them to tell us that they were keeping her overnight so she could see an oncologist in the am. Well, she finally did see an oncologist - at 5 pm later that day. That was yesterday (I think -I'm not even sure what planet I'm on right now). She started Chemo today. I never thought I'd be so happy to say "my mom is on chemo!" I had a nagging feeling that the oncologist was going to tell us that there was nothing he could do. I know this ride has just started and I'm exhausted already. What about people that don't have people like me who won't take "no" for an answer? Now my point to all this rambling is - I think I know why the survival stats are so bad - you can't get in to see a (expletive considered) oncologist. I used to be very pro AIDS research. I still am - to a point, but it's only been recently that I learned how little is spend on Lung Cancer Research. I don't mean to be nasty, but I find myself not caring as much about Breast Cancer as I used to. That bothers me probably just as much if not more than it bothers you hearing it. Perhaps when the powers that be decide to spend more than 1,000 per lung cancer death on research I will. Today I got 2 flyers in the mail for the annual Cancer Lottery (which has taken on a whole new meaning in our family). "Help raise funds to develop new drugs to fight cancer and find a cure". I agree that new drugs are necessary, but wouldn't some of that money be better spent ensuring that the people who would take even "old" drugs in a timely manner could do so? I have a complete understanding and empathy for the man reported on the news today for trying to "buy" a place on a waiting list for medical treatment.

Kel, if you don't mind me asking.... which chemo was used? We're using cisplatin and etopiside. I asked about others but was told that they got best results with these two.

Hi all and thanks for your support. This'll be short as I've been up for 48 hours advocating for my mom, but we finally got her in a hospital and a consult with an oncologist. He's recommending chemo with cisplatin and etopiside, with some radiation for the chest area (will have a consult with radiation specialist). He's planning to start the chemo tomorrow, and today we're doing the bone scan and brain CT. So we still don't know if it's limited or extensive SCLC. The last two days have given me new insight into just how screwed up the medical system is, but the important thing is that she's being seen and help is on the way. Will write later, just wanted to check in and let you know that we're on the way. Deruo

Sorry for xposting this here and in the general area.... Very briefly, this is what the situation is - My mom has been diagnosed with SCLC (yesterday) The only facility that we can get into says that it may be another week or TWO to see an oncologist. All we have at this point is a diagnosis. I don't want to wait 2 weeks and frankly, with the coughing she's been doing, I don't think it's a good idea - her breathing is getting worse. I've asked to be referred to a major cancer hospital in Toronto, but was told that it would probably be faster sticking with the referral we've already got. At this point, we're willing to pack up a wheel barrow of cash and head to the States to get her seen by specialists there - but who? Where? Do you need a referral in the States for everything like it seems you need here in Canada? We hear rumblings that as long as you can pay, you'll be seen "right away". Can ANYONE suggest what we should do? We're in southern Ontario, panicking, frustrated and willing to travel.

Very briefly, this is what the situation is - My mom has been diagnosed with SCLC (yesterday) The only facility that we can get into says that it may be another week or TWO to see an oncologist. All we have at this point is a diagnosis. I don't want to wait 2 weeks and frankly, with the coughing she's been doing, I don't think it's a good idea - her breathing is getting worse. I've asked to be referred to a major cancer hospital in Toronto, but was told that it would probably be faster sticking with the referral we've already got. At this point, we're willing to pack up a wheel barrow of cash and head to the States to get her seen by specialists there - but who? Where? Do you need a referral in the States for everything like it seems you need here in Canada? We hear rumblings that as long as you can pay, you'll be seen "right away". Can ANYONE suggest what we should do? We're in southern Ontario, panicking, frustrated and willing to travel.

Thanks for your replies everyone. Got the results today. It's small cell. Don't know much more than that at the moment as we're waiting to see an oncologist to find out where we go from here. Probably to determine whether it's limited or extensive and our treatment options. Much as I don't want to "waste" what seems to be valuable time when dealing with this beast, I'd like to get a second opinion about treatment and/or investigate clinical trials. I'm sure there are some SC survivors here. I'd appreciate any words of wisdom and/or advice you may have to share!

Hi everyone. I wrote back in the end of August as my mom was having a broncoscopy for what the Doctor said he was sure was cancer. After waiting over a week for results, they were inconclusive. Said that no malignant cells were found. So today we took her in for a lung biopsy. Mum was a real trooper through it all. Nurse was fantastic, though I have developed a new level of disgust for her GP. (it's a looong story) I wish we could just switch GP's, but that seems to be near impossible here in the not-so-great-white-north. So now we wait until next Thursday to find out what the results are. The nurse said it was fairly commonplace for the broncoscopy results to come back inconclusive, but that this should definately let us know what we're dealing with. She took the time to explain everything to us, and answer our questions - the first person to do so since this nightmare started 3 weeks ago. I find myself wondering if we'd have had a diagnosis and started treatment by now if we lived in the US. I suppose theres nothing productive about that line of thinking, but still. I gave mom some reading material about LC tonight as well. A book written by an MD that wasn't as neggy neg as most other information I've read. (I read the book first before passing it along)I told her that it would help explain what they've done so far, why, and to inform her as to what may happen next, and things she can do to perhaps feel better if and when chemo/radiation starts. I guess I'm hoping it'll empower her. The last thing I want to do is scare her more than she is already. I figured that since she asked me how I knew about the difference between SCLC and NSCLC, I'd share what I've been reading. Many thanks in advance for any suggestions and/or comments ya'll might have - and hugs to anyone who wants/needs one! Deruo

Hi everyone, I stumbled across this site accidentally, but I'm glad I found it. It's a really long story, but my mom went for an xray a few weeks back trying to determine what was causing foot pain. They found "a mass" and sent her for a couple of CT scans. So far, all we know is that they think its cancer, it's been there "for a while" and are waiting for biopsy results. The Dr. didn't mention surgery as an option, but I'm hoping that he's just waiting to see what we're dealing with. As I'm sure everyone here can relate, its been a terrifying experience and I've been a mess since all this started up. Moms in her late 60s and though she's had some health problems, is still a very strong woman. Weird thing is that she never really had a cough until after the first CT scan and had a bad reaction to the dye. Since then, she's okay unless she starts talking. Have other people here experienced/witnessed this? I'm glad I've found you as all I've been able to find up till now is doom and gloom. There doesn't seem to be much of that feeling here.