didier

hi, sorry, i just saw your post. my dad received topotecan as second line treatment. unfortunatley his counts were down and he developed infections so the treatment was discontinued. by the time the infection was under control and the counts were okay it was too late to continue w/treatment because the disease had spread so much. it was hoped the topo would slow the progression, but we didn't get much of an opportunity to see how helpful it may have been, at the first sign of infection, jump on it. my dad was a little too stoic for his own good and ignored the infection and didn't tell me about it until it was essentially too late. a simple oral antibiotic would have possibly treated it, but by the time i figured out what was going on he had to be hospitalized for a week here and there -- all of which was time that he couldn't take treatment. the lost time surely didn't help. he lost his battle after a ten month fight. i hate cancer and i really hate the tobacco companies. i wish i could tell you something helpful. i'm sorry you have to go through this.

Hi, Has anyone had side effects w/Topotecan? My dad said it hits him much harder than Carboplatin and Etoposide. It really exhausts him. Meanwhile, the doc has increased his pain meds (MS Contin and Dilaudid) to make him more comfortable due to mets to the bone. The narcotics have caused unsteady balance on his feet. Does anyone know if this clears up? Perhaps the body adjusts to the increased dosage? Has anyone had similar recations? Thanks again you guys. I really appreciate your input. Warm regards, D caregiver to dad, extensive stage sclc -- mets to liver and bone. caregiver to mom, stage IV scc.

I hope I'm responding correctly. I'm not sure if I hit the right button. Anyhow, thanks everyone for your thoughts and ideas. The bone mets, although according to doc aren't bad overall, give my dad quite a lot of pain. The doc increased his dose to 45mg of MS Contin and 15-30mg of Dilaudid as a breakthrough med. We'll see if this helps. As of now, chemo is the recommended course of action. I guess I'm okay w/that, providing the pain killers help w/the pain. I'm afraid to start radiation because they say it would delay chemo which the doc thought might be better overall because it works systemically as opposed to radiation which attacks the disease only at the problem area. Overall a very disheartening and trying time. On the upside though, I'm fortunate to have docs that are working to make my dad as comfortable as possible. I've got to be grateful for that because otherwise focusing on all of the bad stuff has really messed me up psychologically. I need to get back on track so that I can fight this fight and be a strong advocate and support for my dad. Thanks again everyone. I wish you all peace and as much happiness as possible.

Last week the liver, this week the bone. Doc doesn't want to do radiation at this point because it would delay chemo (topotecan) by about a month. Evidently it would be too toxic to do simultaneously. Anyone have any experience or thoughts with mets to bone/liver and treatment? Thanks. D

Well I was hoping for a clean scan, but instead got hit with the news of 3 lesions on the liver. Sh*t. My dad is also experiencing pain in the pelvic region. The x-ray was clean, but the pain remains quite uncomfortable. The doc told him to double his dose of MS Contin to 30 mg/twice daily. The problem is that it doesn't help the pain and it makes him completely lose his concentration. Has anyone had any similar side affect from MS Contin? I'm going to request another drug that may be more beneficial with less side affects -- if such a thing exists. Thanks, and be well. D

Hi, My dad has mets to the liver now. Doc wants to start Topotecan with possible radiation pending pelvic x-ray results. Curious of the side effects. Doc suggested a a 30 min. infusion five days a week for a month. This is getting pretty upsetting. I'm not too optimistic. Would appreciate any thoughts. Thanks. D Dad diagnosed 01/04 Extensive stage SCLC Pleural Effusion Received six cycles of Carboplatin and Etoposide First scan showed shrinkage to primary tumor Second scan revealed 3 lesions on liver

Hello, My dad finished six cycles of carboplatin and etoposide about three weeks ago. His second scan showed a nice amount of reduction, and his most recent scan indicates that things are relatively stable. He was offered radiation further down the line with the thought that it might met to the brain, but he declined because his doc indicated that radiation enhances survivability by only 5%. He doesn't want to deal with the side effects if it doesn't have a better success rate. Is anyone aware of other options? Has anyone received treatment beyond six cycles of carbo/etoposide? If so, what were they? Thanks. D

Well, its been confirmed that it's extensive sclc. Chemo begins in about 10 days. I've been in contact with my mom's oncologist and he tells me the treatment is the standard for this disease (Etoposide and Carboplatin). I spoke with my dad today and he sounded great. Upbeat and moving on with life. I wish I could do the same. I feel as though I've been hit by a truck. This poor guy is the one facing an ugly disease and I'm lost in space somewhere. Not sleeping, not eating. I'm trying to put it into perspective, honestly. I guess it makes sense to live and enjoy as much as one can because realistically none of us knows what tomorrow brings. I'm trying to force that into my thought process. I love my parents and I don't want them going anyhwere, or to suffer. Unfortunately I have no control over that, and I hate that. I've got to switch gears and get strong so that I can deal coherently with all of this, otherwise I'm not going to be helpful to anyone.

I thank you all for responding. Yes, this is without question the most difficult time of my life. Met with the doc today, and from the way she was talking it sounds like extensive stage to me. She hesitated to answer where it's staged pending the radiologist take on things, although she did say that she saw the PET scan. The doc made it sound that we had about eight months. This is hard for me to comprehend. When I look at my Dad, he looks fine. With the exception of a periodic hacking cough, and evidently he is frequently tired, he seems fine. It appears he is willing to move forward with treatment, which I am happy about, but it appears the outlook is grim. I just don't get it. This sucks. Sorry for my bitching. I hope you guys are doing well. Thanks again for your input and for listening to me rant. Best wishes. My thoughts and prayers are with you all. D

Hi everyone. Things pretty much suck for me. Last Friday my Dad was diagnosed, by way of CT scan and bronchoscopy, with sclc. I don't know at this point what stage it is. He had an MRI tonight and is scheduled for a PET scan next Wednesday. He sees his oncologist the following Monday (ten days from now). I hate waiting. I just completed seven months of treatment with my Mom who was diagnosed with stage IV oral cancer last Spring. Now this. At times like this, minutes can feel like days. As if all of this isn't enough, cancer took the life of a very dear family member earlier this week. I'm walking around in disbelief. The one good thing is that my Mom is recovering relatively well. Her CT scans came back today looking good, so I've got that going for me. On the flipside, I've got my Dad's illness seriously messing with my head. He's a 60 year smoker so I am beyond scared. This is such a nightmare. I don't have to tell any of you that though. I just don't know what to expect. My fear is that my Dad may not seek treatment. I think he is waiting to see how extensive it is before he decides what to do. I suggested he see my Mom's doctors, who would have seen him immediately, but he has decided to stay put at the hospital where he was diagnosed and wait it out for his next appointment with the oncologist. My only concern is that this doctor just completed her fellowship. Granted she did so from what I have read is a good institution (Sloan Kettering), but I was hoping he would see the doc my Mom goes to because this guy has been dealing with cancer for quite a number of years. He's kind of stubborn, my Dad. I realize this is hard for him psychologically and physically, but I don't sense urgency in him. I, on the other hand, am giving him names of experts, trying to expedite appointments with doctors, etc -- but he doesn't seem very interested...although he did ask me about some of the various chemo drugs that I became familiar with as a result of my Mom's illness. They appear to be pretty much the same: Carboplatin, Taxol, Iressa. He was curious about the side effects and whether or not he'd be able to drive himself for treatment, etc. He is very independent, and I don't want to step on his feet, but I'd like to do as much as I can to help. Well, that's my story.