ROLL CALL 2015 (ENROLLMENT, CHECKING-IN, STATUS UPDATE) CLOSED 8-15-15

135

Comments

  • jthornsbury
    jthornsbury Member Posts: 62
    #42
    JThornsbury -- Living Large in the Lone Star State

    Diagnosised on Jan 2013 with SSC of RTonsil after tonsilectomy. offical diagnosis Tx(2) N2b M0. Completed 32 radiation treatements at MD Anderson in Houston Texas. Frist all clear May 2013 two months after my 50th birthday. All Clear with upcoming 2 year and two month scan on July 20th...litte dry mouth. most taste is back. ran and completed my first 13.1 half in March right before my 52th birthday and planning to run the next one in November! Plan is to run two 13.1 a year till I'm 100! :) I am living each day grateful and thankful! 

  • NJShore
    NJShore Member Posts: 429 Member
    #43
    NJShore

    NJShore - Kari & Dan

    October, 2012

    T2N2bM0 stage IV A left tonsicular squamous cell carcinoma (Dan)

     

    it's not an easy road, but a road worth traveling -- and we were fortunate to find this awesome place and incredible people to guide us through.

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #44
    NJShore said:

    NJShore

    NJShore - Kari & Dan

    October, 2012

    T2N2bM0 stage IV A left tonsicular squamous cell carcinoma (Dan)

     

    it's not an easy road, but a road worth traveling -- and we were fortunate to find this awesome place and incredible people to guide us through.

     

    checking in

    Kari & Dam,

    What a great looking couple (and fur baby too).

    Great to see you!

    Matt

  • meaganb
    meaganb Member Posts: 244 Member
    #45
    meaganb

    meaganb, hillsboro, OR;

    diagnosed March 2012 with Adenoid Cystic Carcinoma. Neck dissection followed by 30 radiation treatments. Still NED as of April 2015

  • meaganb
    meaganb Member Posts: 244 Member
    #46
    meaganb

    Sorry double post :)

  • AndrewP16nose
    AndrewP16nose Member Posts: 23 Member
    #47
    meaganb said:

    meaganb

    Sorry double post :)

    work in progress

    Andrew. New Zealand. Diagnosed Sept 2014. Invasive SCC nasal septum extending into maxilla. Incomplete excision Oct 2014. Radio and chemo for 35 days. PET scan April 2015- NED. Facial reconstruction surgery with fibula free flap June 2015. Recovering prior to tidy up surgeries.

  • cureitall66
    cureitall66 Member Posts: 913
    #48
    Cureitall66

    Cureitall66, Michigan- 54 yr old male (Loved one, Kreg)

    Joined Forum Aug 2012

    Dx Aug 2012 Stage IV, SCC BOT, 2 lymph nodes, HPV16+

    Tx ended Nov 2012 No surgery, Chemo (Carboplatin & Paclitaxel) once wk for 7 wks, Radiation 5 days wk for 7 wks

    Latest check up 07/16/2015 - NED

    Back to Golfing and riding his Harley! Enjoying Life! 

  • cmai
    cmai Member Posts: 21
    #49
    Hondo said:

    Wow what a wonderful way to remember Johnny:

    Tim “Hondo”

    Lafayette Louisiana

    2002: First treatment for NPC Did just radiation 180 rad once a day

    2004: Recurring NPC in the same place Did 120 rad twice a day and Chemo

    2006: Recurring NPC again same area, was giving 6 to 12 mounts to live

    2015: Still alive no sign of recurring NPC, living with some very bad radiation side effects and Norcoses to the soft palate, but still alive and thanking God for everyday one day at a time.

     

    On Vacation in the tropical Island of Utila Honduras

    3rd time tx?

    Hondo,

     

    Your story is a miracle...  Did you do any tx for 3rd time diagnosis...  ?

     

    Kat

  • luv2cut1
    luv2cut1 Member Posts: 288
    #50
    Almost 6 years

    Caregiver to husband Pat. SCC epiglottis 2008, recurrence in lymph node 2009. Neck dissection, radiation and chemo twice. NED as of October 2014. Next checkup April 2016. Still doing well. 

  • Elaineh
    Elaineh Member Posts: 21
    #51
    Roll call

    Hey Matt.  I want to enroll but am not sure how??

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #52
    fisrpotpe

    fisrpotps    (forced into semi retirement put out to pasture early)

     

    John Van Grinsven

    Champaign Illinois

    SCC January 1996

    SCC Feb 2008

    last check up showed nothing to be concerned about with cancer

  • KB56
    KB56 Member Posts: 318 Member
    #53
    KB56 - Keith

    Diagnosed 4/1/2013 (April Fool's Day) and completed 34 Radiation treatments and 7 Erbitux.

    T2N2M0, primary right tonsil and multiple lymph nodes on the right side of the neck.  

    Last CT SCAN and Doctor visit was June 2015 and all NED!

    Home state is Texas right outside of Dallas.

    a new grandfather (the first for us) and a very proud grandfather to my new granddaughter. 

     

  • ratface
    ratface Member Posts: 1,337 Member
    #54
    KB56 said:

    KB56 - Keith

    Diagnosed 4/1/2013 (April Fool's Day) and completed 34 Radiation treatments and 7 Erbitux.

    T2N2M0, primary right tonsil and multiple lymph nodes on the right side of the neck.  

    Last CT SCAN and Doctor visit was June 2015 and all NED!

    Home state is Texas right outside of Dallas.

    a new grandfather (the first for us) and a very proud grandfather to my new granddaughter. 

     

    Lots of friends here

    Ratface

     

    Chicago

     

    Diagnosed 2009

     

    Still here!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #55
    Elaineh said:

    Roll call

    Hey Matt.  I want to enroll but am not sure how??

    roll call

    Elaineh,

    you just did.

    Feel free to say where you are from, a little bit about yourself, if you’re undergoing treatment how’s it going, if you’re finished how are your side effects?

    We are very informal here at the H&N forum.  Say whatever you feel like saying, cancer is the common thread here, but possibly not the most important.

    Matt

     

  • Redbanker
    Redbanker Member Posts: 36
    #56
    Four Years Out

    Nick finished his treatment 4 years ago at the end of June, 2011.  He had been diagnosed in March of that years with BOT SCC Stage IV, HPV +.  After a consultation with  Dr. Urken at  Beth Israel (NYC) and a trip to Johns Hopkins, he went with treatment here at the Jersey Shore.  It was the standard 35 doses of radiation via IMRT and three cisplatin.  All things considered, the cisplatin was the worst of it, but Atavin was a life saver.  He never got a PEG and ate--with great difficulty and perseverance--throughout.  Taste came back in stages though he tells me even now apples don't taste as wonderful as they once did.  Some hearing disability from the cisplatin--he did have the dose reduced for the 2nd and 3rd treatments.  The big residual is his failing thyroid that we can't quite get ahead of.  

    I always read the board and am so happy to see so many get successfully to the other side of this challenging treatment--as our medical oncologist told us, outside of some leukemias, this is about the worst of the cancer treatments.  Especially glad to see my spirit guides Skiffin and Hondo still here giving with such generosity.

    Nancy

  • Kritter
    Kritter Member Posts: 147
    #57
    roll call

    Kritter, Nasal cancer, Louisiana, joined July 2014

    Diagnosed July 23rd, 2014 with nasal cancer

    Re-diagnosed May 14, 2015 with nasal cancer again.

    Doing okay as I can and living day to day right now. Enjoying life.

  • tomb247
    tomb247 Member Posts: 54
    #58
    Roll Call 2015

    Diagnosed January 2015

    SCC Tonsil and Base Tounge. Stage3 N 0 HPV+

    6 Weeks IMRT 7 Fields

    1 mo CT Scan Normal

    4 months post reatment Clear with high confidence of No Evidence Disease.

    FIngers Crossed

  • cid817
    cid817 Member Posts: 58
    #59
    Caregiver to husband...

    Husband was diagnosed August 2013 – SCC of epiglottis with 2 lymph nodes, Stage 4b - HPV negative.  Completed treatment end of November 2013 – 35 rads, weekly cisplatin (6 total), no surgery. 

    Did our research and 3 consults before treatment.  Walter Reed suggested surgery to remove epiglottis along with the tumor and put in a temporary trach tube, then chemo and rads.  Was told that the rads would destroy epiglottis and that is why they would remove it.  Local ENT suggested chemo and rads, no surgery.  Local radiologist was furious that we were told rads would destroy epiglottis; said they were trying to save it, not destroy it.  Went with local ENT, radiologist and oncologist.  Were shocked with the differing opinions of treatment!

    Here we are, almost 2 years later, NED.  Second PET scan will be in November.  Issues with dry mouth and taste, some swallowing/slight choking issues, occasional flair ups of the radiation site.

    Every day is a gift.

    From Fredericksburg, Virginia

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #60
    Redbanker said:

    Four Years Out

    Nick finished his treatment 4 years ago at the end of June, 2011.  He had been diagnosed in March of that years with BOT SCC Stage IV, HPV +.  After a consultation with  Dr. Urken at  Beth Israel (NYC) and a trip to Johns Hopkins, he went with treatment here at the Jersey Shore.  It was the standard 35 doses of radiation via IMRT and three cisplatin.  All things considered, the cisplatin was the worst of it, but Atavin was a life saver.  He never got a PEG and ate--with great difficulty and perseverance--throughout.  Taste came back in stages though he tells me even now apples don't taste as wonderful as they once did.  Some hearing disability from the cisplatin--he did have the dose reduced for the 2nd and 3rd treatments.  The big residual is his failing thyroid that we can't quite get ahead of.  

    I always read the board and am so happy to see so many get successfully to the other side of this challenging treatment--as our medical oncologist told us, outside of some leukemias, this is about the worst of the cancer treatments.  Especially glad to see my spirit guides Skiffin and Hondo still here giving with such generosity.

    Nancy

    Awww Shucks..

    Glad to see you here and doing well...

    John

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #61
    Debbie        

    Debbie        

    larynx     

    8/2009 had 35 rad tx

    2/2012  recurrence and had total laryngectomy          

    Ohio

    It is a very rough road but its a fight you can win!!  Hang tough!

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