Joe Cortney CT UPDATE

Well folks got the results of the CT today and, I must say both my Doc and I are really shocked.

A brief history is probably in order. A little over a year ago I had a reoccurrence of my HPV+ SQ BOT.  There were a bunch of METS in my lungs and a new tumor that was wrapped around the muscle under the tongue and SQ was confirmed in my Thyroid and 3 lymph nodes.  A Thyroidectomy and a radical neck dissection were performed.  Short of getting into a PD-1 trail, I was classed as terminal.  The real fear at the time was "quality of life" issues surrounding the tumor under my tongue.  It was so wrapped around the muscle that my tongue was pointing almost straight to the right cheek.  Eating and swallowing were difficult to say the least and projected to worsen to the point of not being able to eat or speak very well.

My doc put me back on Eribitux (god I hate that drug) and for a while it did arrest the growth, but no improvement.  Then he said "this isn't working so I want to try something else".  The something else turned out to be a 40 year old drug (Methotrexate or MDX).  He said that in treating a few other SQ cases that the drug seemed to work well but that it was so "old" and out of favor that few docs try it any longer and it might buy us some time for a PD-1 trial to be available.

MDX, when it works, tends to work for maybe two months before it looses it's effectiveness but if it is effective, reductions can be substantial.  Well, in my case the first two months produced stable results in tumor size and a marked improvement in tongue function but no reduction.  I have been scanned every 8 weeks since we started the MDX and starting 4 months ago we started to see shrinkage of all the tumors.  As of today's results, my lung METS have shrunk by over 40% and some have been resolved completely.  My tongue function is ALMOST normal and the tongue tumor has shrunk by 25% and is stable.

Every scan my doc has warned me not to expect any further improvement and every scan the improvement has been substantial.  So much so that he's not really sure that any of the tumors are still alive and perhaps, what we are seeing is the dead mass coming apart.  Eight weeks from now we are going to do a PET and see what we see.

So, the moral of this story seems to be that someone always needs to be on the other side of the curve.  If for 90% of the people the drug works for two months, there obviously must be folks like me that it just works longer and better.

Imagine, a 40 year old (very inexpensive) drug that no one really uses anymore might have just given me a bunch more time.  Thank God for Doc's that give a crap and don't mind thinking out of the box.

Keep the faith.

Joe

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    That's wonderful Joe

    What an uplifting post! I am so glad that the MDX produced positive change for you. It sounds like no matter what the outcome, it has improved quality of life and that is an immeasurable blessing. I'll keep you and your family in my prayers.

    Barbara

  • avisemi
    avisemi Member Posts: 172
    Yay! Your post made my day!

    Yay! Your post made my day! Let's hope this old drug keeps working this well!  Hope your side effects are getting better too!

    so happy for you!

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    Good,good, good!

    Joe,

    I say I feel 100% better after reading your post.  Most encouraging!

    Positive thinking my friend.

    Matt

  • MrsBD
    MrsBD Member Posts: 615 Member
    Update

    Thank you for sharing your wonderful news. You have given lots of us new hope. Praise God for doctors who care!

  • phrannie51
    phrannie51 Member Posts: 4,716
    Oh Joe!!

    This literally has me choked up....I was half scared to open the post.....but OMG!!  How competely, utterly, undeniablely WONDERFUL!!  Are you walking on air?  HUGE hugs.....and aw...t'hell with it, I'm giving you a smack-a-roo on the cheek!!

    p

  • wmc
    wmc Member Posts: 1,804
    Just Wow, that is so uplifting Joe.

    I remember the outlook was looking grim. This is so uplifting to hear, and I pray it is just dead tissue. You Joe have a wonderful doctor and must have a guardian angel. You are a example of never give up, and prayers do get answered.

    Thank you so much for the update......

    image

    Bill

  • rcaulder
    rcaulder Member Posts: 70
    Awesome

    I guess God has other plans for you!  Jesus looked at them and said, "With man this is impossible, but with God all things are possible."  Matthew 19:26

  • lifeisDHA
    lifeisDHA Member Posts: 64
    I am so happy for you

    Have beening following your story and I know how tough the path has been. I am so glad this MDX works!

     

     

  • cureitall66
    cureitall66 Member Posts: 913
    Haven't been in the loop....

    Joe,

    I guess I've been out of the loop here and didn't know this was going on with you. I am rarely on here much and fell upon this.

    I'm very impressed with the results you have gotten from all of this!

    Thank God we DO have doctors that aren't afraid to step outside of their realm and approach this differently! 

    I will keep you close in thoughts and prayers, may you continue to get very good results as you have been getting!

    ~C

  • joannaw81
    joannaw81 Member Posts: 185 Member
    Joe, I am so happy for you!!!!

    Hi Joe :) I dont post often but a post like this makes me soooooo happy!!!! Keep it going...

  • jcortney
    jcortney Member Posts: 503
    Thanks all

    Knowing the "the power of the mind" might be at work here but I feel so much better today.  Mucous is almost gone and mouth sores are there, but not very painful.  My big challenge now is to get the weight back that I lost during the two weeks of "Radiation Flashback".  It took me almost six months to gain 10 lbs and i lost it all in those two weeks.  Doc suggested that I use some pain meds a half hour before eating to ease the process and it was very successful at lunch today, almost no choking or food getting stuck.  It was something I never would have thought of so I'll keep it up and see if it continues to help, even though I know the constipation will rear it's ugly head; just need to get ahead of it.

    Again, thanks to all of you, you guys are the best.

    Joe

     

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

    Thanks all

    Knowing the "the power of the mind" might be at work here but I feel so much better today.  Mucous is almost gone and mouth sores are there, but not very painful.  My big challenge now is to get the weight back that I lost during the two weeks of "Radiation Flashback".  It took me almost six months to gain 10 lbs and i lost it all in those two weeks.  Doc suggested that I use some pain meds a half hour before eating to ease the process and it was very successful at lunch today, almost no choking or food getting stuck.  It was something I never would have thought of so I'll keep it up and see if it continues to help, even though I know the constipation will rear it's ugly head; just need to get ahead of it.

    Again, thanks to all of you, you guys are the best.

    Joe

     

    Joe

    That is wonderful news! Made my day

    God Bless

  • katenorwood
    katenorwood Member Posts: 1,912
    jcortney said:

    Thanks all

    Knowing the "the power of the mind" might be at work here but I feel so much better today.  Mucous is almost gone and mouth sores are there, but not very painful.  My big challenge now is to get the weight back that I lost during the two weeks of "Radiation Flashback".  It took me almost six months to gain 10 lbs and i lost it all in those two weeks.  Doc suggested that I use some pain meds a half hour before eating to ease the process and it was very successful at lunch today, almost no choking or food getting stuck.  It was something I never would have thought of so I'll keep it up and see if it continues to help, even though I know the constipation will rear it's ugly head; just need to get ahead of it.

    Again, thanks to all of you, you guys are the best.

    Joe

     

    Awesome

    I always say it aint over til it's over dear friend.  I'm so glad to hear things are somewhat moving forward as far as eating goes.  Yes, use those meds to make it easier.  I am totally surprised and pleased to hear about the use of an old tx, and that it seems to be doing the trick !  Bless your team, bless you and the family....and keep on pushing through Joe.  Hugs sent !  Katie

  • donfoo
    donfoo Member Posts: 1,771 Member
    Unbelievable!

    I am SO trilled. Such wonderful and incredibly joyous news. Let's all hope and pary the beast is dead or at least beat down so much it ain't gonna growl no mo!

    WOOHOO!