Have I got a story to tell.....

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I have been pretty scarce on the forum for a while....but I gotta tell you guys what has happened in my life. First a little history, because I don’t recognize many names....course Matt is here....he kept me laughing for years.  

Ok...I was dx’d in 2012 with NPC....I had the regular 35 rad treatments, plus 3 Cisplatin treatments and adjuvant treatment of 3 more Cisplatin with a 5FU chaser. All was well for three years, when a scan showed that it was back in a lymph node in my neck.  I had a neck dissection and three nodes were cancerous, two of which were extracapsulated. Not good, as far as mets go. Then another set of 25 rads. 

One year later another recurrence.....this time it was infiltrating a  in my neck, and inoperable....the muscle contains the nerve that runs the diaphragm. They also found a cancerous lymph node in my chest behind my esophagus and three nodules on my lung. I started Keytruda in June 2017. Everything remained stable until February, when the neck tumor took off again. I was at a loss.....they were talking chemo again.....Griselda (that’s what I named the tumor)....my ugly stepsister was out to kill me!  Anyway, I found a clinical trial for surgery at Dana Farber in Boston....where they insert a needle into the tumor and freeze it with Argon gas....cyroablation.  The Dr. there said if I didn’t have cancer in my lungs, he’d consider this surgery as curative. There was a possibility, however, that as my body absorbed the dead cancer cells an antigen might get created...an antigen made of my personal cancer cells....and with the help of Keytruda, it may start attacking other cancer of the same type. 

Well, I had a scan in May...a month after the surgery....my neck was clear, but I had 4 new nodules, 1 one my left lung...my cancer had crossed over to my “good side”!!!  We decided to stay on Keytruda for two months and rescan.  I had that scan last week, and saw my Oncologist Monday.  ALL lung tumors are gone!  They will scan my neck on the 21st, but I don’t feel anything going on there so I’m sure it’s ok. I think I might just hear the words NED....for the first time in forever.....words I never thought I’d hear again. 

So Matt....here’s a fist bump and a huge hug for you....we’ve been doing this a long time.  Never give up!  Get to know your disease...

p

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    and the H&N world was again happy

    P51,

    I worried about you, put 10 years on my face (maybe, my sister-in-law was correct I look terrible), but you are here, you are happy and healthy and my world is better with you in it.

    Does your horse treat an Oregonian well?

    Talk to you later.

    Matt

  • Klingels
    Klingels Member Posts: 78
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    Congratulations!

    I am happy to hear all is going well. I have been on the forum for about a year, and I have been following your story. Your responses on the forum have always been so positive. You really researched your options. Congratulations on all tumors being gone!

  • johnsonbl
    johnsonbl Member Posts: 266 Member
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    Sweet!

    Laughing

  • swopoe
    swopoe Member Posts: 492
    edited August 2018 #5
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    Great news, Phrannie!! Hoping

    Great news, Phrannie!! Hoping for NED!!

  • tommyodavey
    tommyodavey Member Posts: 727 Member
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    Good To See You Back

    Hi Phrannie!  It is great to have you posting again with the exception of the bad/good news in your post.  When you first got sick we all worried so much because you didn't have much weight to lose and it just about killed you.  But you bounced back and are such a strong warrior!

    Not too many of us oldtimers have stuck around.  The reason I keep popping in is because my type of cancer was so rare I wanted to make sure any newbies found another member with the same problems.  My treatment was a bit kinder than most everyone here so I cannot answer many questions and leave that up to the general membership here.

    Well, I'm pulling for you again and wish you the best in recovery.  It sure sounds like you have this episode covered and maybe a good NED is in the future for you.

    Stick around and post some more.  You're a sight for sore eyes!

  • donfoo
    donfoo Member Posts: 1,771 Member
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    sigh sigh sigh

    So glad to hear you are doing well. I wondered and wondered and wondered and hoped and hoped you were just off living life and not dropping in from time to time. Great news you continue beating the beast. Is my invite still good? Still wanting to make a trip up north. Laughing

  • wbcgaruss
    wbcgaruss Member Posts: 2,320 Member
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    Great to see you are doing well

    Glad to see you are through some rough times and are on the good side again. I was a reader and a super lurker on here in late 2012 and started treatment for throat cancer in January of 2013 with rads and chemo. I got through that and never joined until I had tongue cancer just this year and was operated on in June. I remember the many times you mentioned hanging from the ceiling fan and it paid off. God Bless and I hope Griselda never darkens your door again. 

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    P51

    Thank you for your post/ update. I am so happy to read your post. As you often mentioned, I will keep you in my thoughts and put them in my pocket.

    My Best to You and Everyone Here

  • Fritz
    Fritz Member Posts: 106
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    Fantastic News Phrannie

    Phrannie, this is just FANTASTIC news.  Like Matt I was worried and afraid of the worst since I have not seen you on the site.  I still read posts but I do not comment much any more; however, this brought out the "comment bug" in me. You were so helpful to me during my treatments in the summer of 2016.  You and Matt were both Godsends for all of us going through treatments then.  I am so happy for you and wish you only the best.  Stay strong and my thoughts will always be with you!!

    Freddie

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
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    Woohoo.

    Well thats some awesome news. What a strong person you must be. Cheers....

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    edited August 2018 #12
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    I'm a newbie, but I've

    I'm a newbie, but I've already been encouraged and enlightened by things you say.  HOORAY that you've got Griselda on the run!  

  • Steve1959
    Steve1959 Member Posts: 28 Member
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    Great news Phrannie! What a

    Great news Phrannie! What a great outlook on life and your battle to slay this cancer beast. You inspire me.

    Steve

  • caregiver wife
    caregiver wife Member Posts: 234
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    Awesome!

    So very happy for you, Phrannie!

    Crystal

  • phrannie51
    phrannie51 Member Posts: 4,716
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    donfoo said:

    sigh sigh sigh

    So glad to hear you are doing well. I wondered and wondered and wondered and hoped and hoped you were just off living life and not dropping in from time to time. Great news you continue beating the beast. Is my invite still good? Still wanting to make a trip up north. Laughing

    You betcha the invite still

    stands!!!  July is a great month to see the Park, so is September (too smokey in August)...you guys could even park your motor home right here and plug into the barn!  BTW, Greg and I got a motor home this summer....we’re heading south this winter....we couldn’t last year, and this year was looking doubtful.....but now we can. 

    So Mister you start making plans!

    p

  • phrannie51
    phrannie51 Member Posts: 4,716
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    wbcgaruss said:

    Great to see you are doing well

    Glad to see you are through some rough times and are on the good side again. I was a reader and a super lurker on here in late 2012 and started treatment for throat cancer in January of 2013 with rads and chemo. I got through that and never joined until I had tongue cancer just this year and was operated on in June. I remember the many times you mentioned hanging from the ceiling fan and it paid off. God Bless and I hope Griselda never darkens your door again. 

    Yup....

    that’s where you can find me right before a scan.....hanging from the ceiling fan!  LOL

    p

  • corleone
    corleone Member Posts: 312 Member
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    Great to hear from you

    …and that after all this struggle you have everything under control! Such an amazing story! I was like “damn, I don’t want to hear”, until the very end, when you revealed the unexpected (and remarkable) outcome.

  • wolfen
    wolfen Member Posts: 1,324 Member
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    Finally, A Break!

    Have been worried and wondering where you were hiding? So glad it was in a place that could do something wonderful for you.

    Would love to visit again if you make it down here in the winter.

    Luv,

    Wolfen

  • KareGiver
    KareGiver Member Posts: 301 Member
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    On the rare occasions I check the site...

    I always scan for your name in the thread.  With all of your challenges, you continue to come out on the good side.  Yay!!!  Keep it up, Phrannie! :-)

     

  • phrannie51
    phrannie51 Member Posts: 4,716
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    wolfen said:

    Finally, A Break!

    Have been worried and wondering where you were hiding? So glad it was in a place that could do something wonderful for you.

    Would love to visit again if you make it down here in the winter.

    Luv,

    Wolfen

    We bought a motor home.....

    and we plan to go south again....AZ!  So you’ll hear from me. 

    P

  • KB56
    KB56 Member Posts: 318 Member
    edited August 2018 #21
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    Great news

    Phrannie, i haven't been on the site lately much either but do look from time to time and i was so happy to see your post and good news!   I'm so happy for you:)

    All the best,

    Keith