ROLL CALL 2013---CLOSED AS OF 01/12/2014. New list to be posted

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  • cwcad
    cwcad Member Posts: 117
    STill kickin!! Base of Tongue stage IV February 07

    I checked in to see some of the old gang that is till around.  Great to read that the oldsters are still posting.  I can see that many of the threads are connected for the new members.  Great aide and great sight.  I am doing pretty well.  Neck spasms are irritating but not bothersome.  Had heart bypass surgery a year or two ago and seems to be doing well.  I still marvel as to the bravery of the members of the head and neck survivors.  I had it easy compared to most of you.  I continue to try to maintain the claim that I would rather be ;ucky than good so I am still here so that means I am still lucky!

    Hope this signs me up!!

     

     

     

     

     

  • cwcad
    cwcad Member Posts: 117
    STill kickin!! Base of Tongue stage IV February 07

    I checked in to see some of the old gang that is till around.  Great to read that the oldsters are still posting.  I can see that many of the threads are connected for the new members.  Great aide and great sight.  I am doing pretty well.  Neck spasms are irritating but not bothersome.  Had heart bypass surgery a year or two ago and seems to be doing well.  I still marvel as to the bravery of the members of the head and neck survivors.  I had it easy compared to most of you.  I continue to try to maintain the claim that I would rather be ;ucky than good so I am still here so that means I am still lucky!

    Hope this signs me up!!

     

     

     

     

     

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    New to Roll

    Southern Indiana, Diagnosed late July 2012. Stage IV neck, one lymph node, unknown primary. HPV. Neck dissection Cleveland Clinic, radiation and chemo Indiana University Healh Indiana. Last treatment 12/13, 2012. Still battling side effects. Starting tp plan my life again. Get depressed at times, working out of that slowly. Still tired, taste still problem as are the normal side effects. First PET scan March 3. Hoping and praying

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    Boardwalkgirl, (Pat) Indiana,

    Boardwalkgirl, (Pat) Indiana, Diagnosed 4-26-12 squamous cell carcinoma in one lymph node on right side of neck, unknown primary, started radiation (35 treatments) 6-11-12. Had 3 rounds of Cisplatin. Ended treatment 8-3-12. Clear Pet Scan 10-27-12.Will have cat scan 6-25-13. Still struggling with lack of saliva and taste buds but thankful for every day I have been given.

  • Dr.Ed
    Dr.Ed Member Posts: 22

    Boardwalkgirl, (Pat) Indiana,

    Boardwalkgirl, (Pat) Indiana, Diagnosed 4-26-12 squamous cell carcinoma in one lymph node on right side of neck, unknown primary, started radiation (35 treatments) 6-11-12. Had 3 rounds of Cisplatin. Ended treatment 8-3-12. Clear Pet Scan 10-27-12.Will have cat scan 6-25-13. Still struggling with lack of saliva and taste buds but thankful for every day I have been given.

    new too

    hi, I've been posting for a few days , didn'tknow there was a roll call...which is a great thing.  I'm from NYC but live in Houston. I was diagnosed Stage IV--base of tongue, tonsils ,throat and nodes...HPV driven. Had cis/tax/5-fu for 3 rounds then 35 rads and modified neck to remove a positive node. Recovery real tough for a couple of months now alot more "almost normal" days. So glad for this network..thanks, Ed

  • akotke
    akotke Member Posts: 37
    Still here! ;)

    AKotke, diagnosed stage 4 right tonsil scc in 2010.  Still NED, working full time and going to school for Nuclear Medicine.  Happy to see my daugher's first two years of life and my 14 year old son's full transition from a human to a teenager.  Constant pain from the radical neck dissection, a little dry in the mouth still, and a little trouble swallowing some foods but I'm here, I'm able to eat and enjoy, and I'm up to living life!

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    akotke said:

    Still here! ;)

    AKotke, diagnosed stage 4 right tonsil scc in 2010.  Still NED, working full time and going to school for Nuclear Medicine.  Happy to see my daugher's first two years of life and my 14 year old son's full transition from a human to a teenager.  Constant pain from the radical neck dissection, a little dry in the mouth still, and a little trouble swallowing some foods but I'm here, I'm able to eat and enjoy, and I'm up to living life!

    Tim6003 still here, will be till I am 101 years old !! :)

    Dx October 2011 Base of Tongue w/ one lymph node HPV+

    No surgery, no platinum chemo. Just Erbitux and radiation

    Last tx was Jan 21, 2012.  To date NED

    Feeding tube for 7 months, lost 70lbs during tx

    No saliva, eat anything I want (some foods I struggle with like breads, meat) and some food like chocolate and cereal just don't taste right. No OJ for me still.  I would say taste buds are 90% back.

    No pain, working full time.  Only meds I take is 1 ambien (sleep pill) before bed (helps me sleep better through dry throat issue)

    Hunting, cutting wood and playing in the woods every chance I get (other than spending time with my beautiful wife and five children) Sealed

    Chin up all you new folks, this is very beatable and there IS life after cancer!  Fight and give it all you got!!!! (lot's of  prayer kept helped me personally)

    Tim6003

    McCall, Idaho

  • vetorama
    vetorama Member Posts: 16
    Enrolling

    Venice Florida. Diagnosed Oct 2 2012, Stage 4 mandible and floor of mouth. Surgical excision and awesome reconstruction. Week 4 of Erbitux and docetaxel today and Rad tx #11 today.

     

  • postie65
    postie65 Member Posts: 13
    vetorama said:

    Enrolling

    Venice Florida. Diagnosed Oct 2 2012, Stage 4 mandible and floor of mouth. Surgical excision and awesome reconstruction. Week 4 of Erbitux and docetaxel today and Rad tx #11 today.

     

    New Canadian :)

    Saskatoon, Saskatchewan, Canada. diagnosed November 19 2012, early stage 2 SCC of tongue. Had partial glossectomy Dec 4th 2012 (removed 1/3 of my tongue). started 30 radiation on 29th of January and also the first of 3 Cisplatin chemo. Second chemo scheduled for Feb 19th, last of everthing March 12. Also 3 lymph nodes showed signs of something, but won't find out about that until after my post treatment CT scan (must be like your PET scans). Starting week 3 today...still have some spit, food tastes lke crap for themost part but I can still eat. Pain under tongue and lower gums, but didn't have to get any teeth removed. just the promise of FOREVER flouride trays and religious brushing flossing and dental care. I am so glad to have found this site as I don't think the Canadian Cancer Society site has one. Thanks for letting me in to your club, although none of us truly wants to be a member.

  • HAWVET
    HAWVET Member Posts: 318
    postie65 said:

    New Canadian :)

    Saskatoon, Saskatchewan, Canada. diagnosed November 19 2012, early stage 2 SCC of tongue. Had partial glossectomy Dec 4th 2012 (removed 1/3 of my tongue). started 30 radiation on 29th of January and also the first of 3 Cisplatin chemo. Second chemo scheduled for Feb 19th, last of everthing March 12. Also 3 lymph nodes showed signs of something, but won't find out about that until after my post treatment CT scan (must be like your PET scans). Starting week 3 today...still have some spit, food tastes lke crap for themost part but I can still eat. Pain under tongue and lower gums, but didn't have to get any teeth removed. just the promise of FOREVER flouride trays and religious brushing flossing and dental care. I am so glad to have found this site as I don't think the Canadian Cancer Society site has one. Thanks for letting me in to your club, although none of us truly wants to be a member.

    Thank you for posting

    I have not been on the forum as much, but am still committed to update Roll Call annually.  Please keep on updating your status or enroll for the first time.  Aloha, Johnny

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Debbiejeanne, Cincinnati OH 

    Debbiejeanne, Cincinnati OH  diagnosed with voice box cancer 8/09.  had 35 rad treatments then in 2/12 it was back so had radical neck surgery and trake.  Doing ok for now.  Currently cancer free.

  • miccmill
    miccmill Member Posts: 248

    Debbiejeanne, Cincinnati OH 

    Debbiejeanne, Cincinnati OH  diagnosed with voice box cancer 8/09.  had 35 rad treatments then in 2/12 it was back so had radical neck surgery and trake.  Doing ok for now.  Currently cancer free.

    Checking in, Rochester New York

    I'm posting on behalf of my other half, Glenn,

    He's currently 2yrs and 8 months out of treatment for Stage IV SCC of unknown primary.  Radical neck dissection for two positive lymph nodes, etc.   

    Had all his teeth removed before treatment, PEG Tube, lots of radiation due to the unknown Primary location so it was a rough ride.  Lost 83lbs.... etc.

    Today, gained back 40lbs.  has enough saliva to almost completely ignore his water bottle, eats popcorn and anything else he wants to.  Works full time at a very physical job and generally feels in great shape.  I can barely keep up with him. 

    He just had a visit with his ENT Surgeon and Rad. Onc. MD. Everything still looking great and will have a PET scan in July.

    Grateful for every day and loving life.

    My thoughts and prayers are with everyone going thru treatment.  It's tough but it's doable and there's recovery on the horizon.

    Lisa

  • patricke
    patricke Member Posts: 570
    CHECKIN IN

    I'm still here having more fun than I can handle most days, but somebody has to do it, so I have courageously stepped up to the plate.  Life is good, I'm almost 2 years out from my last title weight bout with the beast challenger, and so far so good.  Let's all keep it movin forward!

    PATRICK

  • robinleigh
    robinleigh Member Posts: 297
    Andy diagnosed scc tonsil
    Andy diagnosed scc tonsil Jan. 2011. metastasis to liver and pelvis. fought heroic battle until sept. 2012.. Died surrounded by his loving family. Reported by robinleigh, wife...caregiver...soulmate forever
  • AJW1966
    AJW1966 Member Posts: 68
    i'm here : )

    Alan, outside Annapolis Maryland, DX'd Aug 29th 2012, SCC left side HNC, Unknown primary, 30 rads, Tx ended 30 Nov, aftermath still sucks but slowly and i mean slowwwwly improving : )

  • Jennfer39
    Jennfer39 Member Posts: 23 Member
    ROLL CALL 2013

    Jennfer39, Ohio, DX 10/7/11,  Left tonsil HPV SCC, met to three lymph nodes in neck (same side),   Tonsillectomy, feeding tube, port "installed", and then 40 high dose radiation treatments and three high dose Cisplatin chemo treatments concurrent every three weeks of rads...  Last rad treatment 12/30/11... Two PETS since then, and NED at this time (last PET 10/25/12). 

     

     

  • Irishgypsie
    Irishgypsie Member Posts: 333
    Jennfer39 said:

    ROLL CALL 2013

    Jennfer39, Ohio, DX 10/7/11,  Left tonsil HPV SCC, met to three lymph nodes in neck (same side),   Tonsillectomy, feeding tube, port "installed", and then 40 high dose radiation treatments and three high dose Cisplatin chemo treatments concurrent every three weeks of rads...  Last rad treatment 12/30/11... Two PETS since then, and NED at this time (last PET 10/25/12). 

     

     

    All present and accounted for!!!

    :)

  • CajunEagle
    CajunEagle Member Posts: 408
    I'm still here....

    Just checking in.......and still doing quite well.

    Larry

     

  • HAWVET
    HAWVET Member Posts: 318

    Andy diagnosed scc tonsil
    Andy diagnosed scc tonsil Jan. 2011. metastasis to liver and pelvis. fought heroic battle until sept. 2012.. Died surrounded by his loving family. Reported by robinleigh, wife...caregiver...soulmate forever

    Robin, my sincere

    Robin, my sincere condolensces on the loss of your loved one.  Thank you for the report and will update the list.  Aloha,  Johnny

  • HAWVET
    HAWVET Member Posts: 318

    Andy diagnosed scc tonsil
    Andy diagnosed scc tonsil Jan. 2011. metastasis to liver and pelvis. fought heroic battle until sept. 2012.. Died surrounded by his loving family. Reported by robinleigh, wife...caregiver...soulmate forever

    Robin, my sincere

    Dual posting