gerbil runner Posted January 15, 2004 Share Posted January 15, 2004 ...but it seems that the most common scenario for those who lose the battle with small-cell lung cancer is that the cancer "outruns" the patient's ability to hang on for more treatment. In other words, patients get too debilitated to survive long enough for another round of chemo to knock back the cancer. This seems different from other cancers, where often the patient will run out of options for treatment. So I get the feeling that a sclc patient should become something of a hypochondriac. Let no symptom go unchecked, stay as strong as possible, eat like a horse when you can. Scan frequently, treat agressively as possible. Am I wrong? Am I missing something? It just seems that most who lose the sclc battle had not run out of treatment options, and could have survived/thrived longer with better management. I do NOT mean to make any caregiver feel that he/she has not done the best possible in those cases - I'm primarily trying to convince my mother (who will wait and wait and wait before calling a dr.) that she will be much better off if she changes how she deals with discomfort and "minor" illness. My mom was coughing up blood periodically for 3 months before she saw a dr. KatieB, I have read several times that you felt your dad could have done better if he had been more open about symptoms he was experiencing. That's the kind of problem I'm trying to address. Any other thoughts, comments? Jen Quote Link to comment Share on other sites More sharing options...
OhioKat Posted January 15, 2004 Share Posted January 15, 2004 Your idea does seem to have merit, from things I've read here and other places on the web. Maybe being a hypochondriac is just what we need to be. Quote Link to comment Share on other sites More sharing options...
flabet Posted January 15, 2004 Share Posted January 15, 2004 While I agree with you that you have to watch SCLC very carefully and get every symptom checked ASAP, I think from what happened with my husband and what we are seeing here with other members of the SCLC board, Small Cell is just so aggressive that it is sometimes impossible to stay ahead of it. For a while, you are doing great and within a couple of weeks your condition deteriorates so rapidly that there's just not much that can be done and the end comes very quickly. This is certainly not always the case, but seems to ba a common occurance. Please do all you can and stay on top of every new symptom and best of luck to you and your mom. Flabet Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 15, 2004 Share Posted January 15, 2004 I am on a first name basis with every clerk, nurse, assistant and window washer at my Dr.'s office! I call them for any and every thing that I don't think is right or any time I have a question. They have always been very helpful and very understanding. God Bless, MO Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted January 15, 2004 Author Share Posted January 15, 2004 Flabet, I'm so sorry your husband lost his battle with this horrid disease. I looked back at your posts, since this happened before I joined the board. I admire your strength in still coming to this board and responding. I do not mean to imply in any way that you (or the dr) did not do enough for Doug! Also, it seems your husband was not fortunate enough to get really good responses to chemo. Not fair. Not fair at all (but then, what part of this disease is). The speed at which sclc can move is my very point. There may be a window of only a week between "not quite right" and "too sick to be helped by the treatment". I'm only hoping to convince my mom (and maybe raise awareness) that sclc waits for nobody, and any symptom or problem should be checked. With this disease, we need all the help we can get. Quote Link to comment Share on other sites More sharing options...
flabet Posted January 15, 2004 Share Posted January 15, 2004 Gerbil Runner, I was not in anyway disagreeing with you. I agree with you that every single symptom or change in condition must be checked immediately. My point is that even though it may be aggressively treated immediately, it's still very difficult to control this disease. As a matter of fact, Doug did have a very good response to his first round of chemo, shrinkage of tumors and very close to remission, but unfortunately when the chemo quit working, there wasn't enough time for the new chemo to work before the tumors were out of control. I think liver metastasis is the toughest thing to deal with and I pray your mother doesn't have to fight it. Greg (bart ziggie) is an example of the devastation that occurs with liver metastasis. Please insist that your mother be vigilant and stay on top of any and all changes in her condition. This disease takes everything anyone has to fight it. My prayers are with you. Quote Link to comment Share on other sites More sharing options...
OhioKat Posted January 16, 2004 Share Posted January 16, 2004 When I was done with my first chemo & radiation, I had thought there would be testing done like every 3-6 months but my chemo doc at that time told me that testing wouldn't really help, that if the cancer came back it would be very fast moving and aggressive (as well as hard to treat) and I'd have symptoms right away. Basically he told me to call for an appointment any time anything suspicious was going on, to be a hypochondriac I guess. Quote Link to comment Share on other sites More sharing options...
Guest Posted January 16, 2004 Share Posted January 16, 2004 I agree that you have to keep on top of every minor symptom -- but, as others have stated,-e.g. "There may be a window of only a week between "not quite right" and "too sick to be helped by the treatment". And ---There may also be some truth to "everbody's different". But the reality is ---the disease comes back with a lot more punch than the first time and you have to be treated almost immediately. I keep researching --- looking for preventative therapies ---vaccines, gene therapy, angiogenesis (sp) etc. Not too much out there -- You also have to be a good candidate ( they list the requirements). Example: I missed a vaccine study because I was too far away from my last chemo. I missed another type, because I was on steroids. If you should relapse, and are looking for a clincial trial -you have to be very quick about it. This is not a piece of cake. In fact, when I asked my onc ( who happens to be very good) if he could help me find a clinical trial --should I relapse, he said, when the time comes, I should do the research -and he will decide if it is right for me. He, apparently, does not have the time. If I don't find a clinical trial --- I will have to go with the standard treatment available. Quote Link to comment Share on other sites More sharing options...
Guest cbysea1 Posted January 17, 2004 Share Posted January 17, 2004 I figured it out early on when I researched the sclc and I realized the name of this game was win the first round and stay as healthy and as on top of your body as possible while waiting if or when new ones show up. I didn't feel sick after the initial pneumonia was cured until the treatments started. I just finished my first 25 rounds of 200 rads a day last Thursday.I finished my chemo last Wednesday.I get 2 weeks off then about 3 more weeks of just radiation. I feel like the tumors (sclc and squamous 3 are breaking up (Its hard to explain but I feel something) . I get very sick from the treatments.The chemo was exhausting and made me emotional but the radiation kicked my butt.I have lung spasms from it. It's just horibly painful. But.......I am already feeling better since the radiation has stopped for my 2 week break. I know I will be even stronger by tomorrow.I needed these next 2 weeks off very much. This is a tough cancer and survival chances are only as good as we take care of our selves in between bouts,the way I see it. My doctor said I had a 50 % chance of killing these 2. 50% sounds good to me.I know I have bet money on worse odds! *smile* I will be ready for anything it takes to stay around my family longer. Quote Link to comment Share on other sites More sharing options...
rick m Posted January 17, 2004 Share Posted January 17, 2004 yes this disease can come back with a vengence. but it seems all cancers are brutal when and if they return. i remember my step mother gettiing her breast cancer back about 2 yrs after it was gone......went to her lung, bones and brain. doctors should not even use the term cure when it comes to any type of cancers. a cure is somthing you get rid of and it never comes back....all cancers have a chance that they will return. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted January 17, 2004 Share Posted January 17, 2004 I was told that the only way to know for sure if you are cured of SCLC is if you are alive in 5-10 years. Until then scan, scan, scan......and don't smoke!!! David C Quote Link to comment Share on other sites More sharing options...
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