The Cold Hard Facts

jcortney
jcortney Member Posts: 503
in Head and Neck Cancer #1

Had a serious conversation with my MedOnc today and it was good to finally let myself ask the hard questions.  The deal is, if the spots in my lungs are infectious, the chances of my beast coming back is 60%.  If one or more of the nodules in my chest are cancer, the recurring percentage is 90%.  The good news is in either case it's controllable with Chemo, though as with most cancers, they are chemically incurable.  

So, my genome testing confirms I"m a candidate for the trial that will start in 2015.  The good/bad news is that I have to redevelop the disease to get into the trial.  That means it will be "wait and see" once we stop this regimen.  At least it's not a double blind trial so everyone gets treated.

Be safe and happy.

Joe

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    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?

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    just the facts

    Joe,

    Hard questions, hopeful answers!

    I hope the results are what you want to hear, then you can choose your next path.

    Always my best brother,

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    Joe, sending positive

    Joe, sending positive thoughts and tons of hope for good news.  stay strong.

    dj

  • jcortney
    jcortney Member Posts: 503
    #5
    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?

    Chemo

    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

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    I sitting here

    asking myself if I'd have what it takes to ask the tough questions, I truly admire your courage (I'm afraid I'd ask, then put my hands over my ears and start humming Jimmy Crack Corn).  The trial sounds super interesting.....and I especially like the part that it's not double blind....everybody gets a chance.

    I'm pretty much in awe of you right now.

    p

  • wmc
    wmc Member Posts: 1,804
    #7
    Tough questions to ask.

    Very hard questions to ask but needed to be asked. I hope I can ask when needed as well. Lets go for the long shots of 40% and 10%. Well pray for those odds for you it doesn't come back at all.

    Bill

  • katenorwood
    katenorwood Member Posts: 1,912
    #8
    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   

  • jcortney
    jcortney Member Posts: 503
    #9
    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   

    Hi 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
    patricke Member Posts: 570 Member
    #10
    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

  • jcortney
    jcortney Member Posts: 503
    #11
    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

    Odds

    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

     

  • Guzzle
    Guzzle Member Posts: 710
    #12
    jcortney said:

    Odds

    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

     

    Good Luck

    Good luck to you Joe

  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    Hi Joe

     

    Funny things happen with C, not sure why. My NPC came back the 3rd time back in 2006 and the doctors only gave me 6 month to a year then all by its self it just stopped growing. My ENT did a biopsy about 8 months ago and it showed the NPC still there but still not growing. All she would say is just keep doing what you are doing because this is a very unusual case. All I tell her, it’s because it is all in Gods hand.

     

    As my friend Kent would say Believe.

    Tim Hondo

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #14
    Hi Joe

    Glad to see there are options if needed, lets hope and pray there is no reoccurrance. Hang in there Joe.

          Jeff

  • cureitall66
    cureitall66 Member Posts: 913
    #15
    Praying for the best...

    Joe,

    Sounds like you have things worked out the best they can be.  Hoping you will get more answers soon.  Will there be a follow up scan or xray in the near future? Or is this a wait and watch? Sorry, if I missed some of your info given in your past posts.

    God Bless,

    ~C 

  • jcortney
    jcortney Member Posts: 503
    #16
    cureitall66 said:

    Praying for the best...

    Joe,

    Sounds like you have things worked out the best they can be.  Hoping you will get more answers soon.  Will there be a follow up scan or xray in the near future? Or is this a wait and watch? Sorry, if I missed some of your info given in your past posts.

    God Bless,

    ~C 

    Scan

    We'll do a throat/chest scan in about 6 more weeks.

    Joe

  • donfoo
    donfoo Member Posts: 1,773 Member
    #17
    just wondering...

    Hey Joe,

    I was just thinking about you over the weekend; thanks for posting an update. I appreciate you offering your personal struggles and journey to us here, allowing us to watch as you cross so very tough bridges. Given some earlier decision points about QOL and treatment outcomes, it seemed like these other questions would have been addressed. Always a learning process here and so glad to have brave fighitng survivors like you to continue lighting the twisting and opaque journey through cancer. I wish you the very best.

    Adding the comment about distant mets and recurrence. I had a conversation with an ENT not too long ago along the same lines. In response to asking about looking for and finding distant mets (due to similar pesky lung nodules), his somewhat blunt response was something like we'd be playing a very different game. The realities of long term survivability change so dramatically one really has to dig deep and wholly grasp the notion og being on the winning side of the field. Hang in there! Don

  • jcortney
    jcortney Member Posts: 503
    #18
    donfoo said:

    just wondering...

    Hey Joe,

    I was just thinking about you over the weekend; thanks for posting an update. I appreciate you offering your personal struggles and journey to us here, allowing us to watch as you cross so very tough bridges. Given some earlier decision points about QOL and treatment outcomes, it seemed like these other questions would have been addressed. Always a learning process here and so glad to have brave fighitng survivors like you to continue lighting the twisting and opaque journey through cancer. I wish you the very best.

    Adding the comment about distant mets and recurrence. I had a conversation with an ENT not too long ago along the same lines. In response to asking about looking for and finding distant mets (due to similar pesky lung nodules), his somewhat blunt response was something like we'd be playing a very different game. The realities of long term survivability change so dramatically one really has to dig deep and wholly grasp the notion og being on the winning side of the field. Hang in there! Don

    "I had a conversation with an

    "I had a conversation with an ENT not too long ago along the same lines. In response to asking about looking for and finding distant mets (due to similar pesky lung nodules), his somewhat blunt response was something like we'd be playing a very different game"

    Yep, that was my experience also.  If it gets to the lungs, your survival rates plunge.  We tend to not want to understand that most cancer is chemically incurable with present technology.  There is very encouraging treatment on the horizon, but for many it will probably not reach fruition in time.

    Hope you are well.

    Joe

  • hwt
    hwt Member Posts: 2,328 Member
    #19
    jcortney said:

    "I had a conversation with an

    "I had a conversation with an ENT not too long ago along the same lines. In response to asking about looking for and finding distant mets (due to similar pesky lung nodules), his somewhat blunt response was something like we'd be playing a very different game"

    Yep, that was my experience also.  If it gets to the lungs, your survival rates plunge.  We tend to not want to understand that most cancer is chemically incurable with present technology.  There is very encouraging treatment on the horizon, but for many it will probably not reach fruition in time.

    Hope you are well.

    Joe

    Joe

    I am a huge believer in clinic trials. Time & again, I have mentioned my cousin who had mets melanoma to liver & lungs. His only option was a clinical trial we found. He just celebrated 10 years cancer free! And remember with stats/percentages, by the time they are published, so many new tx have come along that they are sometimes outdated before published.

    Prayers for a positive outcome. 

  • jcortney
    jcortney Member Posts: 503
    #20
    hwt said:

    Joe

    I am a huge believer in clinic trials. Time & again, I have mentioned my cousin who had mets melanoma to liver & lungs. His only option was a clinical trial we found. He just celebrated 10 years cancer free! And remember with stats/percentages, by the time they are published, so many new tx have come along that they are sometimes outdated before published.

    Prayers for a positive outcome. 

    Thanks

    I too am positive about the trial.  What it seems to me, is my Doc is putting me on a long (18-24 weeks) regimen of chemo then we will sit back and see if/when I reoccur.  I think he is doing this to coincide with the beginning of the trial so if I do have mets, I'll qualify for the program.  The good news is he is running it here locally.

    Again, it might all be for naught as the nodules really could be infectious.

    Thanks for the encouragement.

    Joe

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