The Cold Hard Facts

KTeacher said:

Thank you

Thank you for asking the tough questions and sharing the information.  I have my PET at the end of the month, hopefully won't have to ask difficult questions.  Are you currently on chemo or waiting for tests to find out about nodules?  Is the genome test for H & N or for recurrence?

Just chemo (carbo/taxol/erbitux).  I couldn't justify (and either could the doc's) having the lung biopsied as the treatment was going to be the same either way and I have about 6 or 7 nodules and they would have had to test every one to be definitive and they were pretty sure that I'd collapse at least one lung in the process.  Now, quite frankly it doesn't really matter.  Chances are very good because of the chemo that the next CT will be incredibly inconclusive.  As in the previous scans, some were new, old ones were resolved.  I have had a great deal of aspiration so it's likely that at least most of them are infectious.

Radiation was not an option as I had a neck dissection for this reoccurrence and everyone, including the entire tumor board, were convinced that re-radiating the same spot, now with no tissue to protect it, would produce permanent very serious damage to the throat.  It became a "quality of life" decision.

Take care,

Joe

katenorwood said:

Hello Joe

I know your dealing with a crappy dx.  And that this question may be a retorical one.  But have they considered you a canidate for any other tx for the lungs ?  I have a wait and see one on the lungs also...yet different dx.  We kind of play bop a mole with our problem areas that appear.  Also again, this may be a questioned that has been asked before also.  (are they doing targeted medicine for you ?)  You mentioned genome testing, is this actual tissue (tumor samples) or swab, blood samples that would match trials for you ? 

And Joe I'm trying to wrap my mind around their reasoning for saying 60 % chance of cancer for sure if it's infectious in the lung ?  Have they tried top dog antibiotics to see if these areas clear ?  I hate playing the devils advocate, you must trust your doctors answers and make the best plan of attack possible, as I kind of get from your post that you are. 

Be safe Joe, and I'll be praying things will turn around for you soon.  Cancer bites, and you are a very brave soul and deserve only the best !  Hugs sent !  Katie   

The testing was to see if I was a candidate for PD-1 PL-1l protocol.  They tested the tissue taken during the neck dissection.  So, they were looking at the actual mass removed.  The particular trial they want me for is a 2015 trial.

As for the 60/40 calculation perhaps I wasn't very clear.  Since Chemo will not eradicate all cancer cells that might have again spread from the primary site, and again since it already reoccured once, they deem the chances of yet another flare up at 60%.  This is irrespective of whatever is happening in my lungs.  That is a completely different calculation.  If some of the lung nodules are in fact a spread of SCC then it would be classified as Stage IV lung cancer.  With current therapy (x trials) there is no coming back from that, though it is treatable.  I like the way my Doc put it, "if it's cancer, we have years.  if it's not cancer, we have decades".

Good luck with your struggles, I'm pulling for you.

Joe

patricke said:

HOPING

Hey Joe,

I am very, very sorry to hear about these cold hard facts that you are dealing with.  I am hoping that you are one who beats the odds, it is possible.  I am with you in spirit as you fight the beast, wishing for the best of outcomes for you on this part of your journey.

PATRICK

Thanks Pat,

I was reading an interesting book, Anti-Cancer.  The portion that pertains to this conversation was the author was lamenting on the mean survival rate of his cancer.  He got really upbeat there were so many cases obove the mean and he then set off to find out how to become one of them.  It's an inspiring read.

Joe