Starr13

Oh, good, then I don't feel so all alone. I haven't noticed it or experienced it at all on this site, but I have on two other sites (and subsequently I don't visit those sites any more) where there is a dominating attitude that the "good" patient is valued and admired, and, specific to extensive sclc, we are supposed to cooperate, and die on schedule, and, we are supposed to help our medical teams and caregivers have an easier time of it by dying when the stats say we're supposed to. On those other sites, I have actually read a post from a caregiver that said "my spouse is such a GOOD patient!"; from a nurse that said "dying patients make it very difficult for their caregivers when they do not know when to let go when their time is up; hanging on and fighting makes it hard on the rest of us"; from a patient with sclc limited that said "I've already made the decision that if my cancer should spread and I am extensive, I will not fight it"; and so on. I find such attitudes completely appalling and horrible, and therefore am not surprised at the low survival rate. Fortunately, my oncologist couldn't offer an attitude that is VERY far removed from this sort of thing - he is very, very positive, but without being silly, or making false promises. The long term survivors I have spoken to have all been very difficult patients, based on their descriptions of their various experiences. They are very naturally in the category of "free child" vs. "adaptive child"; surely that is why they are survivors (in addition to excellent medical care and other factors). They're not rude or disrespectful in any way, but, they are very firm, proactive, outspoken, etc., and at least one of them that I know well won't hesitate to break rules, and go completely against doctors orders, if the decision is logical and based on something he believes in very strongly (and so far he's been right every time).

So, a few weeks ago, my radiation oncologist told me that I am a very difficult, frustrating patient. I told her, well, hmmm, sorry, I've never been a cancer patient before, I suppose I'm not very good at it. Actually, I've never been a "patient" of consequence of any kind before: the last time I needed a doctor for anything was for a sinus infection like 10 years ago, and, 10 days of antibiotics fixed the problem. And since extensive sclc isn't a 10 day, $25 fix, please pardon the confusion while I get adjusted to this... Actually, I'm not a terrible patient - but I absolutely DO ask a lot of questions, verify all information, refuse medications that I do not believe are appropriate, and I also inquire about items of research etc. I am always very respectful and courteous and I bracket everything in "please" and "thank you", but, I am very aggressive and demanding in terms of my health care. I will also ask the same question ten times and ten different ways to make sure the answer comes out the same. And, I happily pay the $22 to download complete articles from the Journal of Clinical Oncology or other periodicals (the abstract never tells the complete story) and bring them to my appointments and ask questions. And I have no problem breaking or bending rules, if common sense and circumstances warrant it. As an aside, the appointment with my radiation oncologist ended with her hugging me, so, we did part on good terms in spite of the trouble I tend to cause for her. And I do have good relationships with my doctors, but, I take a sort of "trust but verify" position that probably drives them a little nuts. So anyway, following the "difficult patient" indictment, I spoke with a psychiatrist who specializes in cancer patients and shared this experience with her, and she cheered. She said patients who are "difficult" have the very best prognosis and tend to live a lot longer. She said PLEASE continue being who I am, it's a VERY good sign. Then, I found some studies on pubmed.gov that measure "free child" vs. "adaptive child" specific to sclc, and, it turns out that studies support the concept that the difficult patient does indeed have a far better prognosis and typically such persons live far longer than the more compliant, agreeable patients. I am curious to know if anyone else has noticed this more "difficult" patient behavior on the part of long term survivors? Are long term survivors more iconoclastic? Or is this isolated speculation on my part?

Ghita, I have this vs. being married to someone who has it, and being just past three months into it, I may not have the best advice, but one thing I do to cope is interact with survivors as I find them. I have a list of ten of them right now, and they are three to ten years out, and nine of the ten have extensive, not limited sclc. Three of them have had recurrances and second line treatment. All of them are doing well. I have one long term survivor in particular that I talk with on a regular basis, because his advice makes so much sense, and he's a lot like me. I also read a lot of articles and abstracts off pubmed.gov. That's encouraging to me because I can find long term survival percentages - for example, I'm looking at an article from the Journal of Clinical Oncology from 1994 on PCI that gives a 10 year survival rate of sclc extensive of 5%. Now, that 5% seems like a very small number, however, it gives me great hope, because (1) it's based on a patient population from diagnosis year prior to 1984 (otherwise how to publish survivor results ten years later in 1994), and (2) the number isn't zero, it's 5%. If 5% of any patient population can survive for ten years, then, I probably can too, especially since my starting place is 2007, not 1984, and especially since I am otherwise very healthy and don't smoke any more. These are two coping mechanisms that I use. So far this is getting me through, and, it's more or less working for me. Since your husband has limited and not extensive (I assume) your situation is far better. I did talk to a five year survivor tonight; she's in her 60's and has been cancer free for three years; she told me tonight and she told me four weeks ago the same thing - that the fear never goes away, she does dread the scans and there are days when it catches up with her, and that she copes by staying very busy and engaged in her life. She has so much going on it's ridiculous - family events, weddings, travel, etc. Now that I think about it, all the long term survivors have said the same. That's probably why they've survived...

Ned, I don't know that I would be comfortable jumping right into second line if the intent is adjunctive chemotherapy - would it make sense to fire that weapon before it's needed? Maybe it would, I don't know. I wasn't thinking fast enough to ask him yesterday; I was so happy that he brought this up because I have been very, very worried about micrometastasis and it seems that with small cell, nearly everyone gets to remission, then, it comes back right away. His plan sounded awesome so I stupidly didn't ask the details. I looked at CindyRN's profile again and it seems that she had something like nine straight months of chemotherapy in first line. That was almost certainly with a change of drugs along the way, because it's not supposed to continue to be effective after 6-ish cycles, right? Regarding my exercise program, I do notice that it takes longer for me to recover from weight training. I am guessing this is a chemotherapy side effect that hopefully will go away.

Ned, thank you for that, you saved me some confusion, I specifically didn't post the question to Dr. West because I thought I remembered an article from him that said chemotherapy after six cycles has no benefit at all. After visiting the link you posted I now see that that is NOT what he said, at all. Duh. I am still not entirely sure what he is saying exactly in terms of how it might apply to my oncologist's strategy - I usually have to read his articles twice before my non-doctor brain comprehends. He seems to be saying that +6 is appropriate IF there is no progression and IF the patient has a defensible perforance status. I will go back to read it again. On a similar note, I did learn something new today that might be useful to anyone who is exercising - in weightlifting, muscles are damaged and then repaired, and, I decided to do more weightlifting and less running/walking because the latter is so mind-numbingly boring, etc. Weight lifting is at least fun, and interesting. But then I read some information online about cancer and inflamation, and, using the same medical degree, I immediately made the quantum leap that weightlifting = inflamation in the muscles = might provoke sclc mets and progression to the muscles. I am pleased to report that my oncologist says um, no. But, seriously, I wondered if recovery from strenous exercise might cause the body to have to try to prioritize its work of healing and repair, and it turns out that exercise should actually help dramatically, for a number of reasons that I will mistate if I try to remember them exactly, so I won't try. Bottom line, exercise if you can, it just might help win the battle, but, use common sense as my oncologist put it. Edited to say: Ned, I just read the Q & A section, and Dr. West explains it all clearly there. It appears that additional cycles may be used (not often) if there is no progression, if the patient can do it, if there is no danger of toxicity or rather if the benefit outweighs the potential for unacceptable toxicity etc. What I don't see anywhere - and what I guess no one can really answer because it's such an individuated issue - is does it actually WORK.

Thanks Wendy but I am worried - I do see where several people came through first line just fine but then quickly relapsed, so...I am worried. But then I worry about EVERYTHING related to this. On that note, I was looking over profiles to get a sense of treatment scenarios and see if I could wrap my mind around six straight months of chemo, and, noticed that a lot of patients have coughs, either consistently or on and off. I haven't had any coughing at all. I did have a smoker's cough prior to diagnosis, but that disappeared within a week. I also had a cough between chemo 3 and 4 that turned out to be an infection, but, haven't had any coughing since. Does this mean it's coming later? Is this a side effect of chemo? Or is it an impact of the cancer, or (???). It seems like coughing is a GOOD thing in that it's the body's way of clearing out gunk. So is the lack of a cough a bad thing???? Thanks in advance for any thoughts...

I saw my oncologist this morning; chemo #6 will be next week. Scans after #4 did not yet have me in remission - still a 1.0 cm lesion on liver, and still "residual treated disease" on lung. However, "excellent improvement" according to my doctor; I will have scans again after chemo #6. After that, he may or may not recommend radiation; he wants to see the scans first. Regardless, even if the next scans show the cancer all gone as he expects, he is going to do chemo #7 and #8, in an effort to drive out any micromets (and therefore I would assume reduce relapse potential). I did not ask him if he intends to change the drugs, but, has anyone else had this as part of first line treatment? I'm up for it; my blood counts are all normal, no side effects, no meds; keeping a normal work, travel and exercise schedule, and so I'm happy to do it but wonder what everyone else's experience has been and especially if it had a positive impact on the outcome. It seems like CindyRN had a full six months of chemo in first line but perhaps others have too... Thank you for all responses and I hope everyone is having a nice holiday season.

Awesome news

Connie, I expect to read posts from you 14 days after December 19. You are going to come through this just fine; a higher power sent you to us for a reason and you have given so many people here so much hope. All will be well, and you will have many more Christmases with us...

Ken, I agree completely. I too take full responsibility for the self-inflicted lung cancer I now have, thanks to smoking. (No offense intended to anyone here who does not share this view point.) I feel as if I owe my body one huge apology for the harm I did to it, and, I will never touch another cigarette, ever again. I'm lucky though - I don't even miss them. Having said that, I feel as if I have a good chance of winning this, because of having no side effects, no performance issues, not even tired. Haven't missed a meal, gained some weight, blood work is awesome. BUT - how to maintain that, especially considering the assumed treatment to come, knowing the high relapse rate of sclc. The most difficult part is trying, without any guidance from my onc, deciding WHICH components of complimentary medicine to leverage. There is entire too much data out on the internet, and no where near enough information. For example, you can find 100 scientifically based articles that say that green tea is terrific, and, you can also find 100 scientifically based articles of equal credibility that say that green tea is bad, especially during chemotherapy. So without guidance and input from the traditional onc, operating solely on the guidance of the ND, how, exactly, do you decide on your own what to incorporate? In the short term, I have only been taking a multivitamin (over the counter common type), and eating whatever my body tells me it wants. Today that was a lot of oatmeal, scrambled eggs, yogurt, broccoli sprouts, tuna fish, peppers, garlic, french toast, etc. Oh and lots of water. Frustrating...

Ken, that does help. I quit smoking a month or so prior to diagnosis; my CEA is .8, however, I understand CEA has no relevance with sclc. I do work out every day, but, I am lost and confused on the complimentary therapy issue. I found someone I wanted to work with - a man with credentials, an ND, and on staff at a respected institution, and, he wanted to arrange a consult with my onc, a step I agree with because I only want to work with my onc, not against him, but, imagine my amazement when he refused to participate and consult with the ND. "We don't do that" I was told. I am very disappointed, and so not sure what to do now...I don't want to just go off on a tangent and do things without my onc weighing in and making the final call, because I think it's very important to make sure he has control of my treatment plan. But at the same time I truly believe that traditional medicine brings only about 30% to maybe 50% of the solution. I think radiation and chemotherapy perhaps resolve the SYMPTOMS of lung cancer, but, they do nothing to address the underlying cause, which is why - particularly with sclc - the relapse and mortality rate is so high. I am convinced that lifestyle, mindset, attitude, diet, exercise, and serious, aggressive immune system reconstruction and support are critical to winning this. I am also convinced that my oncologist should be guiding the decisioning process. I do NOT think any of these factors should in any way, shape or form replace traditional medicine, or even be weighted more heavily, but rather than they should play a supporting role and be a natural extension of the work the traditional onc is already doing. So, I don't know what to do - wing it, get a new onc, or what...so I am curious what everyone else has done, or even perhaps considered, and then decided against... This is very frustrating and disappointing.

I am just wondering if anyone has tried any complimentary therapies, in full cooperation with their traditional treatments and with the support of their oncologists. Beyond that, has anyone tried exercise/workout programs, diets, quitting smoking, etc.? If so, does any of it seem to be helping with remission or heading off relapse? I am evaluating several options; just curious to know what may have worked for others...

Peggy, I am sorry no one has answered yet - I am new to this, still in first line, but, yes, there are third and fourth lines for sclc, I just do not know what they are yet. If you look at some of the profiles of the longer term members of the community you can see some of the variations of chemotherapies. In addition, depending on how long it has been since your husband has had first line, if he had a strong response to it, he may be able to have that same chemotherapy again, however, it does depend on how long ago that was... Hopefully one of the veterans will come along to give you a better answer...

But, did you read the entire article, or just the abstract? I paid the $22 and downloaded the full article some time ago. It gives the same statistic as every other study for sclc extensive long term survival (ten years+), around 1.2% or so. Of course, these studies are very old, but, if you think about it, they HAVE to be old in order to be able to track survivors who live that long. Still, this article and others like it (you can find several by searching through pubmed.gov) are very encouraging because they at least indicate that the number isn't ZERO. And, it's very, very encouraging to see that there are people with mets to liver, brain, bones, etc., who do go on to live many more years, and often with a quality of life similar to what they had before diagnosis. As to the perceived negativity of the medical community, I thought that way too, as recently as a month ago. But the more I talked to various oncologists, and examined their direct patient experiences, etc. the more I realized that they can really only view the world through their personal lens: what have they actually seen and observed in their practice experience, and what has happened with their patients. If you think about it, with a long term survival rate of around 1-point-something percent, most oncologists are not going to have a lot of long terms survivors of sclc extensive in their practices, and, I would even venture to speculate that very possibly the BETTER, more prestigious doctors, and the highly ranked national cancer centers are going to be the most pessimistic of all, because it seems logical that perhaps they would see the most desperate and hopeless of cases. The long term survivors that I have spoken personally with were treated by local, unknown, unpublished oncologists in smaller or even remote U.S. cities. To a person they have no clue why they survived and others don't, except that perhaps they were very involved in their own care, and they also had a high degree of confidence in their medical teams. So I no longer fault the doctors for being so negative, because they are viewing it all through the lens of their direct experience. It does seem from what I can tell - the long term survivors of this that I have spoken to personally - every single one of them was treated by a very aggressive doctor who pushed the envelope. These are sclc extensive with mets to brain, liver, etc. Only one of them that I have spoken to personally had just simply conventional standard of care treatment, and, she was sclc limited, not extensive.

John, thank you, I appreciate your response, but, can you help me understand - I thought there were only two lines for small cell. Your post seems to indicate that there are more, which in turn could mean more options for others including me, in the event of relapse. Can you help me understand what are the various options, especially if you are on your fourth combination of chemo drugs? Ned, thank you for your post, you're right, I'm seeing the glass half empty right now. The first doctor to tell me my diagnosis (NOT an oncologist) told me the stats and that everyone dies, no exceptions. Even though intellectually I now understand that he was incorrect, and even though I have spoken personally to many long term survivors, I am having a very difficult time deprogramming this message out of my head. I know I need to get control of this however, because I do firmly believe that our bodies react to the messages from our minds....