Third time around the block....BUT --- Update...

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phrannie51
phrannie51 Member Posts: 4,716
edited June 2017 in Head and Neck Cancer #1

I start Keytruda treatments next Monday....Got my baseline scan last Thrusday...the nodule in my lung has shrunk by half....hmmm...guessing that the antibiotic they gave me after they biopsied the node in the middle of my chest has something to do with that.  Anyway, I'm excited and nervous....nerves only because I want what I want, and that's small side effects and that it will work.  :)  That's not too much to ask, is it?  LOL....well, it might be, but if ya don't ask, the chances of getting aren't as good.

p

 

Yes, there's a BUT!  I originally was diagnosed with NPC in the spring of 2012....had my 35 rads along with 3 Cisplatin chemo's....and then another 3 Cisplatin/5FU chemo's.  I went 3 years without a hitch until they found it again in my lymph nodes by my collar bone.  This time I had 25 rads, and they let me go, but followed up with a chest scan every three months...and a Head and Neck scan every 6 months.  Made it till April, this year...when I found out I have a tumor in my neck muscle and a spot on my lung.  Lung biopsy a month ago, confirmed that my cancer was all from the original cancer. 

Now here comes the tricky part....they were supposed to send the tissue in for genetic testing, to see if I was a candidate for Keytruda....ah, but through some commuication screw up, that wasn't done.  My Oncologist called right when I was sitting there, and told Pathology to get going on this.  In the meantime....that is, in just the last three weeks, the FDA approved another DNA misfire for testing in order to qualify for Keytruda....AND I HAVE THAT PARTICULAR MISFIRE!!  Yes, if the lab hadn't screwed up, this misfire wouldn't have been tested, and I wouldn't have qualified!  

So everything worked out better than I could have hoped/prayed/begged for :)!  I qualify for targeted therapy.  I am SO relieved!!  I have funky DNA and LOVE it! LOL.

p 

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Comments

  • corleone
    corleone Member Posts: 312 Member
    #2
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    clinical trial?

    Gotta be  DNA mismatch repair deficiencies or a microsatellite instability-high state, these were approved in May.

     

    Can you please send me a link to this clinical trial?

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    It's not a clinical trial, Corleone....

    If you have the mismatch repair deficiencies you are approved for Keytruda....period.  The same as if you had the PD-l1. And that's exactly what I have! :) 

    p

  • corleone
    corleone Member Posts: 312 Member
    #4
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    phrannie51 said:

    It's not a clinical trial, Corleone....

    If you have the mismatch repair deficiencies you are approved for Keytruda....period.  The same as if you had the PD-l1. And that's exactly what I have! :) 

    p

    And is this covered by your

    And is this covered by your insurance plan? I live in Canada, things are different here, but I wonder how much would that cost if it were out of the pocket.

  • caregiver wife
    caregiver wife Member Posts: 234
    #5
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    cost of Keytruda

    It is good you get to do Keytruda!  Last year, when we thought husband was starting Keytruda, it was $7,000 / dose.  We had applied for grand to help pay for it.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
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    sounds promising

    P51,

    I wish you the best kind of luck.

    Matt

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited June 2017 #7
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    And am so glad the timing was perfect in spite of missteps on the part of others, phrannie.

    Lifting prayers!

  • armana
    armana Member Posts: 97 Member
    #8
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    Prayers

    You will be in my prayers.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
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    corleone said:

    And is this covered by your

    And is this covered by your insurance plan? I live in Canada, things are different here, but I wonder how much would that cost if it were out of the pocket.

    I am on Medicare, Corleone....

    as I'm over 65....I also have a supplemental plan to cover what the government plan doesn't (20%).  I don't think Medicare can refuse it, as it's governmental and manditory insurance, tho there may be a limit....that I'm sure of.  I doubt the supplemental has much of a say in it, as the approval also came from the Federal government. 

    p 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
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    Noellesmom said:

    And am so glad the timing was perfect in spite of missteps on the part of others, phrannie.

    Lifting prayers!

    I've always said...

    Timing and perspective are everything!! :)

    p

  • corleone
    corleone Member Posts: 312 Member
    #11
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    phrannie51 said:

    I am on Medicare, Corleone....

    as I'm over 65....I also have a supplemental plan to cover what the government plan doesn't (20%).  I don't think Medicare can refuse it, as it's governmental and manditory insurance, tho there may be a limit....that I'm sure of.  I doubt the supplemental has much of a say in it, as the approval also came from the Federal government. 

    p 

    Thanks Phrannie!

    I appreciate your feedback and details.

     

    Good luck with your treatments, and please keep us posted! 

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #12
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    All The Best

    It is disturbing to me reading about your C coming back again.  Your attitude is always on the positive side so that surely helps.  I'm so sorry you have to deal with this again Phrannie.  My heart breaks when I read about another forum member having a recurrance. 

    You stay strong and I'll put you in my daily prayers...again.

    Tom

  • KareGiver
    KareGiver Member Posts: 301 Member
    #13
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    Take care, Phrannie...

    Got you "in my pocket," as you always used to say...

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
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    KareGiver said:

    Take care, Phrannie...

    Got you "in my pocket," as you always used to say...

     

    I'll take that

    pocket, KareGiver....thank you! :)

    p

  • rcaulder
    rcaulder Member Posts: 70
    edited June 2017 #15
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    Very Sorry

    I'm just very sorry you're going through this again.

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #16
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    I am so very glad that you

    I am so very glad that you qualified for targeted therapy, but totally bummed that it came back again.  I really look forward to reading your comments and taking comfort from your positive attitude.  My Jim's journey began in 2012, too, and I have drawn a lot of comfort from this board.  Hopefully, we can give a little of that back to you!  Blessings and Peace.

    Tracey D

  • donfoo
    donfoo Member Posts: 1,771 Member
    edited June 2017 #17
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    SIGH!

    Just saw this P. So sorry to hear about another cancer yet trilled you are able to be treated using the newest and very promising therapies. You're a veteran bus rider so you know how the journey goes and have greatest hopes it ends in the same place - NED. Best wishes my dear friend. FYI - I'm searching for an RV to go visit places and people. You're on the route. See you soon. Don

  • Gypsy28
    Gypsy28 Member Posts: 69
    edited June 2017 #18
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    Oh dear

    I haven't been on here in a while. Was sorry to see this. I hope the Keytruda works well for you. I know you'll update as it goes along. It's so helpful for everyone. You are and have been so helpful.

    Hang in there,

    Shirley 

  • Laralyn
    Laralyn Member Posts: 532
    #19
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    On the bus again...

    Phrannie and I have been on the bus at the same time... for three times in a row now! It's starting to feel like some kind of special charter bus at this point. ;-)

    The strides forward being made in cancer treatments right now are pretty amazing. I'll be right beside you on the bus, holding your hand!

  • wolfen
    wolfen Member Posts: 1,324 Member
    edited June 2017 #20
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    Well, Rats!

    So sorry to hear this P, but am so glad you have qualified for new treatment. Hope you make it to Arizona again soon. Well, not too soon. It's forecasted for 120 on Tuesday.

    Luv Ya,

    Wolfen

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #21
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    Oh Phrannie

    I am so sorry this hear this however at the same time I am very happy you qualify for the treatment. I hope all goes well.

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