As promised, an update from the MDA visit

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

I  went to MDA today and met with Dr. Blumenshein.  For those who don't know who he is, he's the head of the Head and Neck Oncology Department at MDA.  Quite an impressive guy.

At any rate, he spent a great deal of time with me and even went off to call my Doc here in Dallas to consult.  The end result is while he does have a PD-1 trial ongoing, it is due to close out in about 5 weeks.  That would leave just enough time for me to get in (you need 28 days of no chemo drugs before starting the trial).  And while it did seem that he was willing to put me in the trial he counseled me against stopping the therapy that I'm on as it appears it might be working.  He completely agreed with my doc's treatment.  So, for now, no trial for me, I'll stay the course on the Methotrexate.

Now, here's the take-away.  At the very end, we were talking about when a PD-1 drug could hit the commercial market.  I made the comment that I thought from my reading that the drug might be available in 2017.  He thought that it might be as early as mid 2016 as based on a few small trials they are trying to fast track it though the FDA.  The silly part (from my standpoint) is the drug is already approved for lung cancer.  Just not Head and Neck cancer that has spread to the lungs.  Crazy huh?  

Then he said something that made me go ahh.  He said that I would probably need the drug before it was commercially available.  I'm not sure if he realized that he just told me that he didn't think my current therapy would get me to mid next year, but that's what he said.  I knew I was on shaky ground, I just didn't realize how shaky.  So, the good news is he woke me up and I realized I needed to make some mind changes.  If he's wrong great, but even with PD-1 the success rate is only about 25%.  I now need to wrap my arms around what to do going forward and make some plans.  

So, thanks folks for all the good wishes.

Joe

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
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    Joe

    Agree that what the doc had to say could be confusing. I would place my focus on the fact that he thinks Methotrexate is working but also see your concern with his comment about possibly needing PD-1 before it becomes commercially available. You may wish to call Dr Blumenshein's office and tell him you had given much thought to what he said and ask him for clarification as it was a lot to take in at the time. Hopefully, he will be able to put your concerns at ease. 

    And, it makes absolutely no sense that a drug approved for lung cancer hasn't been appoved for H&N cancer mets to lung. It's a crazy world!

    Thoughts and prayers are with you.

    Candi

  • jcortney
    jcortney Member Posts: 503
    #3
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    hwt said:

    Joe

    Agree that what the doc had to say could be confusing. I would place my focus on the fact that he thinks Methotrexate is working but also see your concern with his comment about possibly needing PD-1 before it becomes commercially available. You may wish to call Dr Blumenshein's office and tell him you had given much thought to what he said and ask him for clarification as it was a lot to take in at the time. Hopefully, he will be able to put your concerns at ease. 

    And, it makes absolutely no sense that a drug approved for lung cancer hasn't been appoved for H&N cancer mets to lung. It's a crazy world!

    Thoughts and prayers are with you.

    Candi

    and mine to you

    I know you are going though tough times too.  I better than most probably understand your thoughts.

    Hope this all ends peacefully.

    J.

     

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    update

    Joe,

    The doctor agreed, your current path of treatment is good. I imagine you are approaching cancer treatment genius and as such you will make the correct choices leading to remission.

    Boy the doctors sure make you read between the lines, it’s a ****

    Your Oregon bud,

    Matt.

  • jcortney
    jcortney Member Posts: 503
    #5
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    hwt said:

    Joe

    Agree that what the doc had to say could be confusing. I would place my focus on the fact that he thinks Methotrexate is working but also see your concern with his comment about possibly needing PD-1 before it becomes commercially available. You may wish to call Dr Blumenshein's office and tell him you had given much thought to what he said and ask him for clarification as it was a lot to take in at the time. Hopefully, he will be able to put your concerns at ease. 

    And, it makes absolutely no sense that a drug approved for lung cancer hasn't been appoved for H&N cancer mets to lung. It's a crazy world!

    Thoughts and prayers are with you.

    Candi

    Forgot to add

    "And, it makes absolutely no sense that a drug approved for lung cancer hasn't been approved for H&N cancer mets to lung. It's a crazy world!"

    Not only is the drug approved for "lung cancer", it's approved for Squamous Cell Carcinoma of the Lung.  The same damn critter that almost all of us have, just if it didn't start in the lung, tough luck.  No wonder our drugs cost so much, the hoops the FDA makes everyone go through.  Can you just imagine what all these trials cost, when they effectively know the data already?  Just nuts.

     

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #6
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    confusing always

    Joe,

    I totally get the WTH questions that are going through your mind.  With these discusions of mets it's important for us all to remember they go by where our primary was....if they actually can tell.  That's what they base the meds on, besides type of dx, type of tx's already given, type of tumor make up, type of grade, type of histology....darn list goes on forever.  Keep on them for any and all answers.  I believe your on the right track with everything.  Keep us posted Joe, my warmest thoughts are with you !  Katie 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #7
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    hi

    Thanks for the update Joe. I'm really sorry to hear the options are growing fewer and more unproven. You've done more than most here in getting fully engaged in gaining knowledge and seeking the best care available. You were just ahead of me and I felt like I was drafting in your wake as you pavved the path forward in our pack. I'm praying that the chemo is keep the beast at bay, maybe even beat it back a bit. That would be huge! Hang tough. Don

  • wmc
    wmc Member Posts: 1,804
    #8
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    Joe thank you for the update...........

    Sorry to hear about the trial and the uncertainty. I'll keep you in my thought and paryers that the drug opens up sooner.

    Bill

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #9
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    Joe

    I am a trustee on a health and welfare fund. We recently had an all-day meeting on drugs where we discussed and learned about new ones, their cost, similarities to others, and how pharmaceutical companies have become the modern day pusher man. Because of the position you’re in you have nothing to lose by going to your insurance company and attempt an appeal to see if they would cover the drug for your particular case even though it is not approved for your cancer. Matter of fact I will discuss your issue with the administrator to my fund and see how an appeal may factor out.

    My theory on doctors is. They are practicing medicine at least that’s what they call it a practice. As long as you fully trust the doctors you associate yourself with, abide by their recommendations but let them know that statistics are made to be broken. The success rate for PD-1 because of you could jump to 26%. I always enjoyed being the odd ball many on here can attest to that, matter of fact in some aspects of my job I get paid to be off kilter. In other words never become predictable and stay an individual, one that alters the rules or in your case the statistics. 

    I don’t frequent the site as much as I like, partly because of a demanding job and partly because I hate seeing the bad news which sometimes I feel overrides the good. However, I always look forward to an update from you as I will continue to do.

    Stay positive

          Jeff

  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
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    Hi Joe

     

     

    Wonderful people there at MDA, if it was not for them I know I would not be alive. My doctor was Dr Hanna Chief of Surgery. You are on the right track and if you don’t mind I will keep you in my prayers as well

     

    Tim  

  • jim and i
    jim and i Member Posts: 1,788 Member
    #11
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    Joe, between the FDA,

    Joe, between the FDA, insurance companys  and polititicans practicing medicine it is a surprice any of us are beating the beast.  It sure can frustrate a person. Makes one feel as is they are playing Russian roulette with your life. Continued prayers for you. 

    DEbbie

  • jcortney
    jcortney Member Posts: 503
    #12
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    Duggie88 said:

    Joe

    I am a trustee on a health and welfare fund. We recently had an all-day meeting on drugs where we discussed and learned about new ones, their cost, similarities to others, and how pharmaceutical companies have become the modern day pusher man. Because of the position you’re in you have nothing to lose by going to your insurance company and attempt an appeal to see if they would cover the drug for your particular case even though it is not approved for your cancer. Matter of fact I will discuss your issue with the administrator to my fund and see how an appeal may factor out.

    My theory on doctors is. They are practicing medicine at least that’s what they call it a practice. As long as you fully trust the doctors you associate yourself with, abide by their recommendations but let them know that statistics are made to be broken. The success rate for PD-1 because of you could jump to 26%. I always enjoyed being the odd ball many on here can attest to that, matter of fact in some aspects of my job I get paid to be off kilter. In other words never become predictable and stay an individual, one that alters the rules or in your case the statistics. 

    I don’t frequent the site as much as I like, partly because of a demanding job and partly because I hate seeing the bad news which sometimes I feel overrides the good. However, I always look forward to an update from you as I will continue to do.

    Stay positive

          Jeff

    thanks

    Jeff,

    Thanks for the info but my problem in not financial, my problem is I cannot get the drug because it hasn't been approved for use in "head and neck" squamous.  Just the same damn disease but one that began in the lungs.  

    Amazing, huh?

    Thanks again,

    J.

  • donfoo
    donfoo Member Posts: 1,771 Member
    #13
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    jcortney said:

    thanks

    Jeff,

    Thanks for the info but my problem in not financial, my problem is I cannot get the drug because it hasn't been approved for use in "head and neck" squamous.  Just the same damn disease but one that began in the lungs.  

    Amazing, huh?

    Thanks again,

    J.

    other options..

    Joe,

    Have you researched other countries that may offer treatments not available here. I'm not talking about alternative medicine options but where you can obtain some of the new drugs not available here due to lag in federal approvals. I'm pretty sure there are at least a few other countries that have state of the art health care at least as good as the US. Don

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