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Final scan results and a new unusual plan. Need Joe!


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Ok here goes,

All CT's and PET are NED !!!!!!!!!!

Significant radiation damage w/ scaring-my big cough!

Saw Oncologist today who said congrats on NED but I want to do Camptosar and Carbo for a few rounds (once a week for 2 weeks, then 1 week off, then do it again) to help prevent recurrance. I of course started crying because I figured w/ NED I was done.

After he stated the current recurrance stats he feels the extra guns at the end like this are worth it. I had trouble listening and considered throwing myself out the window into traffic.

He also wants me to do PCI (3 weeks)

He gave me a break until 1st week of Dec (40 days between chemo's) and doesnt care which order I do them, PCI first or the 2 rounds of Camptosar first. I tried to convice him that I didn't need to do this and he didn't budge. I am in medicine and spent too many weeks interviewing Oncologits. He is considered a top dog around here. He is very bright.

I however, am not happy about 3 more months of this. I know it's about surviving, but I am tired.

Thoughts, has anyone else done this? Oncodoc Joe, thoughts?

I have met NED, but feel a little like the chair was knocked out from under me.


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Jen I definitely agree with the PCI recommendation (as you know). I'm not familiar with giving carbo/camptosar as consolidation after the treatment you have had, I have certainly not seen anything published showing a benefit with such a treatment although I suppose I could have missed it. If you are comfortable enough, I guess I might ask what the basis of this recommendation is to see if this is a "sounds like a good idea" type of thing or based on empiric evidence. There is a study showing benefit with consolidative chemotherapy after chemoradiation in stage 3 NSCLC and maybe he is extrapolating from that....

And if there is a study that has shown benefit with this approach, please pass it along!

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I am so pleased for you about NED!!! I am Happy Dancing like crazy. I know it has been a hard journey, but you are almost there. The PCI is only offered to those with limited, so you are special. I don't know about the other extra chemo, it's not something I have heard of. Only you know how much you can take. But we are still gonna be here to see you through whatever you decide. :)



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Haven't a clue about the chemo, but want you to know how happy I am that NED has replaced that ---blankety-blank ED.

I hope that after the break, you will feel better and will consider PCI. It sounds awful, I know, but people here have made it through it and come out on the other side to survive a long, long. time.


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Doc Joe makes a lot of sense. Go for the PCI and before you consider add'l chemo.....talk to your onc. Write out all your questions and ask why he feels more chemo is necessary since it doesn't appear to be standard tx for small cell.

Something to remember....stress isn't gonna do you any good either....so don't let the prospect of more tx create too much stress, ok? Try to approach it clinically....ask why it's necessary. Ask any question you might have...then weigh it all out and decide what you're going to do. But please try not to fret over any of it....because that isn't gonna do you any good!

The rest of what I had to say, I sent in an email. Deep breaths, sweetie...and try to relax and enjoy the fact that NED is in the house! :wink:

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