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

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  • Carolinagal4
    Carolinagal4 Member Posts: 22
    #62
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    debbiejeanne said:

    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!

    Me

    diagnosed stage 4 SCC of the tongue (side of tongue) with lymph node involvement in April 2015. Finishing up 35 radiation treatments with concurrent chemo (Cisplatin) now--one more week to go!  The cancer has shrunk considerably so far and I am hopeful that it will continue to shrink (if so, I may avoid surgery).

    Apex, North Carolina

    This site has so much great info and people on it--I feel lucky to have found it!  thanks so much to everyone who takes the time to reply--You make a difference!

     

  • JC F
    JC F Member Posts: 74
    #63
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    Carolinagal4 said:

    Me

    diagnosed stage 4 SCC of the tongue (side of tongue) with lymph node involvement in April 2015. Finishing up 35 radiation treatments with concurrent chemo (Cisplatin) now--one more week to go!  The cancer has shrunk considerably so far and I am hopeful that it will continue to shrink (if so, I may avoid surgery).

    Apex, North Carolina

    This site has so much great info and people on it--I feel lucky to have found it!  thanks so much to everyone who takes the time to reply--You make a difference!

     

    Ditto

    Diagnosed May 2014 Stage IV SCC BOT HPV 16+. Large primary with large right side neck lymph node involvement.Three seven hour marathon cisplatin sessions with 35 rads finished Aug. 20 last summer. Coming up NED so far which is good. Taste and saliva issues still suck which is not so good. Went through the entire process by myself...very difficult...have had to maintain warrior status...

  • SASH
    SASH Member Posts: 421 Member
    #64
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    SASH Still Kicking

    DX - Sept 1999 Stage IV N0 tongue

     

    46 Radiaion, 10 Chemo and surgery

    Now dealing with the side effect of radiation and it looks like if all goes as planned, will have 30 HBOT dives (5x a week for 6 weeks) then surgery to remove balance of lower teeth, file down jaw, and put in posts for a permanent lower implant denture.  Let that heal for 6 - 7 months then they will start with impressions, fits, and some new choppers so I can start eating somewhat normally again.

    Even with all of this, I still licked my tongue cancer.

  • michdjp
    michdjp Member Posts: 220
    #65
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    My dad

    Hi,

    my dad was diagnosed August 11, 2011 with stage 4a tonsil cancer. He had chemo and radiation. Used a peg for over a year.  This August will be 4 years Thanks to god. 

    Have faith and always believe never give up.

    michelle

  • Sunshine60
    Sunshine60 Member Posts: 81
    #66
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    michdjp said:

    My dad

    Hi,

    my dad was diagnosed August 11, 2011 with stage 4a tonsil cancer. He had chemo and radiation. Used a peg for over a year.  This August will be 4 years Thanks to god. 

    Have faith and always believe never give up.

    michelle

    Going Great!

    Caregiver for husband, NED x2 yrs- SCC unknown primary, neck dissection, took out 26 lymph nodes all were negative. Completed 35 Rads, no chemo. Doing greatSmile Has been out of tx since June of 2013.  This site was a God Send for both of us, still come here at least 1x per wk. Never met any of you but feel I know you.  Keep up the good work!

  • donfoo
    donfoo Member Posts: 1,771 Member
    #67
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    two years - all good

    just crossed two years post tx. Overall in better shape mentally and physicall than before. Got tight muscles in the neck and my head sweats now when eating hot stuff. Just hope the long-term side effects stay far away.

  • NJMOM
    NJMOM Member Posts: 64
    #68
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    Roll call

    NJMOM

    Husband diagnosed 7/2/2015 with Stage 4 Base of tongue cancer. 

  • Elaineh
    Elaineh Member Posts: 21
    #69
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    CivilMatt said:

    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

     

    Roll call

    im from Austin Tx

    diagnosed with stage III SCCA right piriform sinus in March 2014

    underwent two courses induction chemo with 5FU, cisplatnim and taxentered then seven weeks of carboplatnim and radiation

    NED since YEA !!!

    bad side effects of treatment include 45 pound weight loss, laryngitis, recurrent aspiration pneumonia and replacement of feeding tube.  I've had nothing but ice chips by mouth for one month.

    Inability to talk and eat or drink have led to social isolation and depression.

    really enjoy this site. It gives me great hope to see how all others have dealt with adversity!!

  • jbrown8813
    jbrown8813 Member Posts: 4
    #70
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    Hi. I'm Jess. 
    Forum name:

    Hi. I'm Jess. 

    Forum name: jbrown8813

    Type of Cancer: Squamous Cell Carcinoma of the tongue 

    Year: 2014

    Home state: Alabama

  • littlemisskitty
    littlemisskitty Member Posts: 35
    #71
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    Roll Call Reply

    I'm Katrina. 

     

    Forum name: Littlemisskitty

    Caregiver to my mother who has Squamous Cell Carcinoma of the upper right jaw that leached into the left lymph nodes.

    Diagnosed May 2014.

    Home state Connecticut

    She went through surgery in June 2014 and again in October 2014 which removed her right side of her upper jaw, part of her upper palette and they reconstructed the upper palette and a prosthesis was made to replace the upper jaw and teeth. A right radical neck dissection was done also that came up negative.  It returned again in June 2015 in her left lymph nodes. She had a left radical neck dissection which revealed the tumor had grown outside of the gland which was supposed to be containing it. They removed the gland and the surrounding area along with severing the suprascupular nerve which he reattached and also splitted to help her regain her muscle movements. She is currently going through 30 treatments of radiation and 7 chemo treatments with carboplatin. She's on number two of chemo today and 5 of radiation. 

    So far I have found this site amazingly helpful. It was such an amazing comforting feeling to know that others have gone through this before my mom and have so many hints and reassurances that she will get through this. We felt so prepared for the doctor appointments and for treatmets (although not sure just how prepared you can be for a life changing event). Thank you for this site and all the information it has offered so far and I hope it will continue to be a help to me as well as others. 

  • Grandmax4
    Grandmax4 Member Posts: 723
    #72
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    Forever Grateful

    Found this board in December 2011

    November 2,2011~~de vinci  robotic full neck dissection to remove

    a mass on my epiglottis . Scc and very blessed that the cancer had not invaded

    my lymph nodes. No chemo or radiation required

    Months of speech therepy, feeding tube, and determination to beat this monster has

    brought me where I am today~~~~~and my God

    July 28 is my 4 year check-up, even though I think I'm fine, there's always that nagging little doubt

     

    Bless you all                       ~~~~~~~~~~~~~~~~~from the great state of OHIO, go Bucks!!                                                                                                                   

  • hawk711
    hawk711 Member Posts: 566
    #73
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    Skiffin16 said:

    Awww Shucks..

    Glad to see you here and doing well...

    John

    Feeling Frisky again

    Hello all !

     

    Diagnosed with BOT cancer on January 2010, with Mets to left side of neck.  Had Chemo and Rads, but no surgery.  Since then had jaw replaced on left side due to ORN.  (Thank you Rads)  Anyway, as of today I am 5 years 4 months NED, that's right I said NED !!!!!

    Hope all of your folks are finding your new normal a good place to be.  I am.   Just gave my daughter away on her wedding day, so I'm glad i am here to do it.

     

    All the best,

    Steve

  • peggylulu
    peggylulu Member Posts: 375
    #74
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    roll call

    Peggylulu , SCC , 2011 Texas , NED 

     

    I'm sorry to say I haven't been on this site in several months . I tend to just read post when I do . I like , Mrs. Sarge don't feel like I can offer much help since my Cancer was not near as invasive as most of yours was. Therefore I am not much help . Update : my post was much longer . Where did the rest of it go ?

  • peggylulu
    peggylulu Member Posts: 375
    #75
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    Trying again

    my post did not complete so I will try again . My Cancer started out as a SCC skin cancer on the top of my head . It was removed by MOHs surgery in Dec. of 2011 , then in April of 2012 I found a lump on the side of my neck . I had surgery and 3 Lymph glands removed also did Radiation . 33 Rads finished On Oct. 26th 2012 . Funny how you never forget that date !Had a recurrence the next April so another surgery . NED ever since . It's so good to see most of my friends are still here ! A big thank you to Civilmatt and Skiffin for all that you do for everyone and this great site !

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    #76
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    MrsBD said:

    MrsBD

    SCC, Base of tongue and mets to a lymph node on each side, non-smoker, HPV negative

    D-Day July 23, 2014

    West Allis, Wisconsin

    I had 33 sessions of IMRT and 8 infusions of Erbitux.

    It is almost one year since Diagnosis Day and I feel very blessed to have just mild lingering effects from treatment.

    Thank you to all of you on this site for the support!

    Checking in on 2/5/2018- It's more than three years since I finished treatment and among other volunteer activities, I'm back to teaching part time. Radiation caused late side effects like neck cramps and hypothyroidism, but it is a great blessing to be alive.

    Mrs.BD in West Allis, WI

    Hey you, I am in Greenfield.   We are neighbors!  My best.  ~Sonja

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    #77
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    peggylulu said:

    Trying again

    my post did not complete so I will try again . My Cancer started out as a SCC skin cancer on the top of my head . It was removed by MOHs surgery in Dec. of 2011 , then in April of 2012 I found a lump on the side of my neck . I had surgery and 3 Lymph glands removed also did Radiation . 33 Rads finished On Oct. 26th 2012 . Funny how you never forget that date !Had a recurrence the next April so another surgery . NED ever since . It's so good to see most of my friends are still here ! A big thank you to Civilmatt and Skiffin for all that you do for everyone and this great site !

    Checking In

    One year NED 7/8/15

    SCC base of tongue to lower right jawbone

    Surgery to remove diseased jawbone and titanium  replacement.  136 lymph nodes removed (all came back clear).  Tissue transplant from lower arm.  30 Radiation  treatments.

    Thank you for all the help during  treatment!  

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #78
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    Tim6003 ....your not getting rid of me

    Base of tongue w Mets to lymph node.  Stage 3 dx in Oct. 2011.  Hpv+  chemo and rads (erbitux) no surgery. Three years out all clean and NED 

     

    In Alaska now 1 full year. Was a childhood dream to move and live here like a pioneer. We did not call it off grid when I was a kid, but that's the deal. Not off grid yet, but getting closer everyday

    Boys love bit. Wife likes it, daughter, well, she come along soon as she meets a tsll, Alaskan boy I'm sure :)

     

    Whisper prayers often for you all

     

    Love and hugs from tim6003

     

     

     

  • Guzzle
    Guzzle Member Posts: 710
    #79
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    Tim6003 said:

    Tim6003 ....your not getting rid of me

    Base of tongue w Mets to lymph node.  Stage 3 dx in Oct. 2011.  Hpv+  chemo and rads (erbitux) no surgery. Three years out all clean and NED 

     

    In Alaska now 1 full year. Was a childhood dream to move and live here like a pioneer. We did not call it off grid when I was a kid, but that's the deal. Not off grid yet, but getting closer everyday

    Boys love bit. Wife likes it, daughter, well, she come along soon as she meets a tsll, Alaskan boy I'm sure :)

     

    Whisper prayers often for you all

     

    Love and hugs from tim6003

     

     

     

    Guzzle
    Stage 4 Tonsil. 16 months out all good so far touch wood. Liverpool U.K..
  • 6Cyn
    6Cyn Member Posts: 29
    #80
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    NED and feeling great!

    I'm caregiver for my husband. He was diagnosed in August 2013 with stage IV Head and Neck cancer, left tonsil and three lymph nodes on same side. 35 rad treatments and 3 cisplatins did the trick. This site is a wonderful support and full of information. Thanks to all.

     

    His words, "Hold on tight and do the fight!"

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #81
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    Roll call

    Base of tongue cancer

    neck dissection and removal of lymph nodes

    35 radiotherapy sessions

    removal of rare tumour in small bowel

    in remission, still on two monthly scopes and throat dilations.

    clear of small bowel cancer March 2015

    taste buds recovered

    energy levels normal

    not gaining or losing weight

    5 ensure2cal each day plus smoothies, yoghurts,custards, soup etc.

    life is looking up at present.

     

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