Starr13

Geri, thank you for your reply. I have extensive (liver mets) but, scans after second chemo showed 85% reduction in cancer and liver mets gone. Brain MRI at time of diagnosis was clean, and I haven't had any side effects with chemo. My logic was that if this wanted to go to my brain it would have been there already, but, that may be flawed thinking. In any event, I now know of four "long term surivivors" who have declined PCI and it has been the right decision. I haven't heard from any extensive survivors, but, I would think the logic might apply the same way? I also haven't heard from any sclc limited survivors who have received PCI. It's a hard decision because on the one hand, all of the medical reports say it just about guarantees a free pass from brain mets, and sclc seems so unpredictable. On the other hand, the side effects seem drastic, and, if a brain met suddenly showed up, there would be treatment options (gamma knife, etc.), correct?

I am wondering if any of you had PCI, and, if not, why you declined the option, or, if you did get it, if you're having any particular side effects? Are you happy with your decision either way? My oncologist raised this today (January-February decision I guess) and while I was expecting it, I noticed that not many people who are in remission from this seem to have this in their profiles. WBR comparatively seems to be for palliative care only, is that correct? (Please forgive me if I have this wrong.)

Dick, I think the loss of family and friends, and the distancing of professional collegues just has to be the hardest part of this whole thing. I envy people who are married because at least they have someone. I am faced with spending the holidays all alone. I am so, so very deeply sad, and hurt. I cry every day because I am so sad. My phone doesn't ring any more. It's as if I am already dead. My own daughter - who I still support - doesn't even call me to see how I am. She did call last week though to ask for money to go on an exotic trip with her boyfriend for the holidays. Can you imagine? I'm going to make it all be o.k. though. Somehow I will get through this; I will get into remission; and then I will recreate my life, and surround myself with new friends - people who value and care about me, and who I can in turn value, support, and care about.

Connie, thank you for taking the time to post the detail, I appreciate it. It helps round out my ability to visualize an actual survivor, especially of extensive sclc. Are you able to say if either of them were smokers? Have you heard of any other survivors of extensive? Everything I've read says it always comes back...and then the recurrance is the big problem. I am surprised to learn that it is possible to fight it five and six times; I thought that there was a second line, but then no third line, and, once you had the second line, there isn't anything else the doctors can offer (???).

I am newly diagnosed sclc extensive, mets to liver, SVC symdrome, just finished third chemo, fourth is scheduled during Thanksgiving week, then scans, and then radiation. I no longer smoke and feel fantastic - just finished a two-hour walk/run this morning, and have had zero side effects from anything except hair loss. My scans (including PET) after second chemo showed an 85% reduction in tumor mass, and the liver mets are gone - so gone that my onc questions if they were even cancer (until I reminded him that's where the biopsy was from). I have been monitoring this site for the last month or so because I didn't realize the password validation email was in my spam folder. ConnieB, when you mention the long term survivors in your support group, can you tell us any more about them? How old are they? Did they have recurrances? Did anything unusual happen in the course of their treatments? Is there any chance you can give us more detail, or, get them to post here? I'm asking because in all the long term survivors I can find, something unusual seems to have taken place in their treatment course, and usually it's been a fever. Coley's Treatment, if my thinking is correct. At a minimum their treatment protocols appear to have been very aggressive and their oncs really pushed the envelope. What do you think? Thank you in advance for your insight, I appreciate it. Also, while I am thinking of it, great thanks to RandyW, I have been studying the information posted, it is very, very helpful.