HAWVET Member Posts: 318
edited January 2014 in Head and Neck Cancer #1

We survived and are into the year 2014. We had 124 folks who enrolled or checked back in. There were 46 who failed to return and their names have been transferred to the MIA listing. Enrollment is voluntary and is separate from the date you joined the forum. Thank you for enrolling. Please enroll or update your status.

 Adventurebob, Marin County, California, joined forum June 2010, enrolled August 21, 2010. DX’d NPC, stage IV with mets to lots of bone. in May 2010. Checked in January 20, 2011. MIA in 2012, checked back in March 2013. Lots of chemo/radiation in 2010, more in August 2011 for bone mets in right hip, more chemo/radiation Sep 2012-Jan2013. Married in bottom of Grand Canyon October 9, 2012 and now doing well.

AJW1966, outside Annapolis, Maryland, joined forum November 2012, enrolled March 7, 2013, DX’d August 12, 2012 w/SCC left side HNC. Treatment completed November 30 and still have difficulties with after effects, but slowly improving.

Akotke, Alabama, joined forum March 2011, enrolled August 12, 2011. DX’d Stage IV, right tonsil in November 2010. Was MIA until checked back in February 12, 2013. Still NED, working full time and attending school for Nuclear Medicine. Still w/constant pain from radical neck dissection, dry mouth and some trouble swallowing.

Arndog64, state unk, joined forum March 2011, enrolled husband in April 18, 2011. DX’d left tongue base tumor w/lymph node invasion on January 28, 2011. After MIA, reported back on February 5, 2013. Husband doing well but still has throat pain and teeth starting to deteriorate.

Backachedp, Minnesota, joined forum October 2009, enrolled July 24-2010. Husband Bob DX’d unk on September 29, 2009. NED May 23, 2010. MIA in 2012 and checked back in March 13, 2013. Was doing OK but with swallowing problems. Having lung issues due to aspiration.. Dr recommending feeding tube.

Chked back June 22, 2013. Surgery on May 20 and swallowing/coughing gotten worse. Also have back problems. God bless and saying a prayer for him.

BartT, Staten Island, NY, joined 03-2013, enrolled 12-31-2013, DX’d 03-2012 w/tongue cancer. Hemiglossectomy, radiation & chemo. All clear at time of enrollment and back to 100% on activities and life style, but with minor but annoying side effects.

Billie67, Torrance, California, joined forum July 2012, enrolled October 24, 2012. DX’d stage IV laryngeal SCC with few lymph nodes. PET/CT NED on September 28, 2012. Checked in January 3, 2013. Updated 01-01-2013

Bjohn, Chicago, Illinois, joined forum October 2011, enrolled January 22, 2013. Husband DX’d w/olfactory neuroblastoma in May 2011. Recurrence in neck in May 2012. Good response and feeling well at time of enrollment. Updated 01/22/2013

Boardwalkgirl, Indiana, joined forum June 2012, enrolled February 10, 2013, DX’d April 26, 2012 with SCC in lymph node on side of neck. Treatment completed and clear PET scan on October 27, 2012, Still struggling with lack of saliva and taste buds.

CajunEagle, Lousiana, 2009, joined forum October 2009, enrolled February 3, 2010, DX’d Stage 4, left tonsilar cancer in 2009. Enrolled on February 3, 2010. Reported back in March 7, 2013 and still doing well. Checked in January 6, 2013.

Catfish_58, Waco, TX, joined forum February 2013, enrolled July 30, 2013. DX’d SCC left tonsil, HPV+ Stage III. Treatment completed April 20, 2013 and scheduled for PET on July 31st.

CathyHorner, Johnson City, TN, joined 11-2013, enrolled 12-29-2013. DX’d Stage III, Laryngeal cancer in June 2013. Clear pet scan in 11-2013. Need trache for breathing and difficulty speaking.

CherieLW, Lancaster, Ohio, joined forum May 2010, enrolled dad (Steve) on June 4, 2013. DX’d cancer of sinus w/one affected lymph node. Undergoing treatment at time of enrollment.

Christmas, California, joined forum May 2005, enrolled July 8, 2008. DX’d NPC Nasopharyngeal in 2004. had been absent but back in. Last check in July 14, 2013 and life has beeen good. Dealing w/problems and completed 10 years from DX.

Chucka21, Vine Grive, Kentucky, joined forum April 2013, enrolled May 21, 2013. DX’d February 21, 2013 w/SCC unknown primary. Modified neck dissection March 5, 2013. Tonsillectomy April 14, 2013. Undergoing radiation at time of enrollment.

CivilMatt, Oregon, enrolled October 22, 2012. DX December 23, 2011 w/Stage Iva, SCC, BOT, HPV+ & l lymph node on left side of neck. Checked in January 19, 2013.

CLRRN, Maryland, joined forum June 2010, enrolled July 13, 2010. Reporting for partner Mike. DX’d SCC left tonsillar basloid. Checked in August 7, 2011. MIA and checked back in June 3, 2013. Reported good news…some ailments but NED.

Corleone, Mississauga, Ontario, Canada, joine forum July 2012, enrolled February 1, 2013. DX’d NPC Stage III on June 14, 2012. Treatment completed December 1, 2012.

Cureitall66, Michigan, joined 12-2012 enrolled loved one on October 23, 2012. DX’d on August 21, 2012 w/Stage IV, SCC, BOT, HPV=, 1 lymph node n left side of nect. Still undergoing treatment at time of enrollment. Reported back 12-30-2013 that NED after treatment. Doing well w/minor issues 

Cwcad, joined forum November 2009, enrolled January 31, 2010, state unknown, checked in 01-31-2010, DX’d Stage IV BOT in February 2007. MIA list and checked back in on February 10, 2013. Neck spasms irritating, but not bothersome. Had heart bypass surgery. Doing well.

D Lewis, Sierra foothills, California, joined forum January 2010, enrolled February 5, 2010. DX SCC base on tongue, January, 2010, checked in July 23, 2010. . PET-CT NED in October 2011. No snot, no spit, no tears, but otherwise living life to the fullest and having a great time. Updated 02-01-2013.

DaveJay, Geneva, Switzerland, joined 12-2013, enrolled 12-28-2013. DX’d Nov 2013 lingual tonsil spread to left lymph node. Surgery completed; Radiation/Chemo to start in January 2014.

Dazey, New York, enrolled January 31, 2010. DX’d SCC unknown primary in summer 2009. Checked in October 23, 2012 and all remains clear NED! Checked in February 1, 2013 and NED continues.

Debbiejeanne, Cincinnati, Ohio, joined forum January 2010, enrolled July 11, 2010. DX’d larynx cancer in August 2009. Cancer returned in February 2,2012. Last check in June 23, 2013-doing well and NED in October 2012. Followup on 12-31-2013 on swallowing problem and nerve damage on left arm.

Dlygoblue, DFW area, Texas, joined forum March 2012, enrolled March 8, 2013. DX’d Olfactory Neuroblastoma in May 2011. Living cancer free.

Ditto1, state unknown, joined forum March 2012. Posted on February 4, 2013 that it is almost one year since DX’d.

Donfoo, SF Bay area, California, joined forum December 2012, posted in 2013 roll call, but had not formally enrolled until 01-2014. DX’d BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes, one tooth out. Tumor board-induction TPF (3 cycles), seq CRT Apr-June 2013. Fully recovered after six months and feeling great.

Dr.Ed, from NYC but lives in Houston, TX, joined forum January 2013, enrolled February 11, 2013. DX’d Stage IV, BOT, tonsils, throat and nodes (HPV driven). Treatment completed and tough road at this time on road to recovery.

Duggie88, Bernville, Pennsylvania, joined forum Februarey 2010, enrolled May 8, 2013, DX’d throat cancer November 22, 2009. Removed part of tongue, epiglottis, uvula and some lymph nodes on left side. Enjoying the day and look forward to tomorrow.

Dunedintech, state unk, joined forum 04-2013, enrolled 12-16-2013. DX’d 01-07-2013 SCC front left of tongue. 27 lymph nodes removed. Lost 23 kgs (50.6 lbs) during treatment. NED on 04-09-2013.

Ekdennie, Oklahoma, enrolled January 17, 2011. DX’d Mucoepidermoid carcinoma of hard palate w/growth into maxillary sinus-June 30, 2010. Enrolled on January 17, 2011. Checked in January 7, 2013 & doing great w/no sign of regrowth. Welcome back!

Fisrpotpe, Champaign, Illinois, joined forum August 2010, enrolled December 29, 2010. Dx’ed SCC 5 golf sized node around carotid on January 19, 1996, radionercrosis of pharynx in July 11, 2008, SCC back of tongue on February 5, 2009, broked neck March 5, 2006 in accident. Reported by Longtermsurvivor on October 25, 2011 that he is still around. Checked in January 4, 2012. Had 4 teeth removed, 4 checkups and continued NED. Updated Feb 1. 2013

Fishmanpa, Front Royal, Virginia, joined forum January 2013, enrolled February 1, 2013. DX’d Tx N2b MO Stage IV on November 30, 2012. Scheduled for neck dissection in Feb 2013 and treatment to follow.

Goalie, DC/Maryland area, DX’d unknown but checked in on February 5, 2013 that was treated two years prior to this posting. Doing well except needing water and an increasing stiff neck condition.

Grandmax4, Green Camp Township, Ohio, enrolled January 19, 2013. DX’s September 2011w/De Vinci Robot surgery on November 2, 2011 and removed epiglottis. All is well and can eat anything.

Greg53, Missouri, DX SCC right tonsil, enrolled 07-20-2010. Checked in January 21, 2013. Almost 3 years out and doing well.

Greg from pa, Pennsylvania, enrolled January 21, 2013. DX’d SCC base of tongue w/mets to lymph notes stage 4. NED in November 2010. Returning back to work soon.

Hawk711, California, enrolled January 1, 2012, diagnosed SCC BOT January 2010 & July 2011. Checked in January 13, 2013. Still NED but having ORN issues, left side of jay, but enjoying every day.

HAWVET, Hawaii, Lihue, Hawaii, joined forum April 2006, enrolled in January 2008. DX’d NPC in January 1998. Treatment completed June 1998 and was NED two years later. Am still around 13 years later and look forward for year 2014.

HobbsDoggy, Southern Indiana, joined forum February 2013, enrolled February 10, 2013. DX’d in July 2012, Stage IV neck w/one lymph node and unknown primary. Treatment completed in Dec 2012 and still battling side effects. Pet scan scheduled for March 3rd.

HONDO, Lafayette, Lousiana, joined forum April 2009, enrolled January 31, 2010. DX NPC in November 2002. Have had lots of problems w/radiation and side effects almost 8 years later. Lost voice and ability to eat, Live in pain, but still alive and working full time. Also works on line with Ministry of Restoring Gods. Saliva glands started to work, but can’t swallow. Updated 02-01-2013 & 12-12-2013.

Irishgypsie, Rochester, New York, joined forum May 2010, enrolled on 07-11-2010. DX SCC’d right tonsil, Posted January 6, 2014 that “Life is Good”.

Its, Michigan, enrolled January 2, 2013. DX’d October 2012 Adenoid Cystic Carcinoma right submandibular gland. Neck dissection to remove gland, 30 lymph nodes, and some local muscle. Still in radiation as of enrollment date. Best wishes!

J4mie, state unk, joined forum 09-2013, enrolled 12-17-2013. DX’d State IV, left tonsil, tonsillectomy & 29 nodes removed 09-06-2013. Treatment completed 11-20-2013 and due to see Oncologist on 12-19-2013.

Jennfer39, Ohio, joined forum November 2011, enrolled March 7, 2013, DX’d on October 7, 2011 w/left SCC left tonsil HPV, met to3 lymph nodes. Tonsillectomy and feeding port. Treatment completed December 30, 2011. Two pets since (last on October 25, 2012) and NED.

JGE, state unk, checked in 03-17-2010. 2008, BOT w/2 nodes. Had chemo and rads. All scans cleared, return to work 01 2009. Finally checked back in January 3, 2013. Welcome back. Enjoyed your post J

Jimbo55, from Chicago working in Bangkok Thailand, joined forum June 2010, enrolled March 18, 2013. DX’d SCC BOT in May 2010. MIA in 2012 and checked back in March 18, 2013 fresh off a clean PET/CT scan.

Jim & I, Ormond Beach, FL, joined forum 05-2011, enrolled August 7, 2011. Checked in January 20, 2013 w/more info. Caretaker of husband Jim, dx’d w/base of tongue, stage 4 and two lymph nodes in April 2011. Finished treatment in August. Three months later spread to both lungs. Informed in September 2012 that less than a year. Still believe in miracles. Adding my prayers and best wishes. Reported on 12-13-2013 that cancer in bones and left jaw. Appt with oncologist on 01-12-2014. Best wishes.

Jkinobay, Arizona & Mexico, enrolled April 21, 2009. DX’d HPV16 positive lymph nodes in 2007, checked in July 27, 2010. Finally checked back in on February 28, 2012. First person to check in-year 2013 on January 2, 2013 and reached the 5 ½ years and still NED.

Joe14, Rochester, New York, joined forum May 2010, enrolled July 22, 2010. DX’d w/SCC unknown primary in April 2010. Left neck dissection & tonsillectomy. One tumor positive of 40 taken. MIA in 2012 and checked back in on March 13, 2013.

KB56, state unk, joined 04-2013, enrolled 12-29-2013. DX’d cancer right tonsil on April 1, 2013. Tonsillectfomy. Treatment completed 06-11-2013. Clean PET scan and NED Catscan just before Xmas.

Kent Cass, Quad cities, Midwest, enrolled July 22, 2010. NPC unknown primary in 2009, Checked in January 6, 2012, still dealing with teeth issues/neck spasms, but still okay. Checked in February 2, 2013 and only little problem is neck spasms.

Kevinr51, Waterford, MI, joined forum 11-2013, enrolled 12-15-2013. DX’d 09-2013 Stage IV right tonsil, 2 lymph nodes. Undergoing treatment at time of enrollment.

Kimba1505, Pennsylvania, joined forum April 2010, enrolled July 20, 2010. Partner DX’d Stage IV SCC left tonsil April 13, 2010. Checked back in July 20, 2010 on day treatment completed. MIA for two years and checked in June 3, 2013. Reported partner lives almost a normal life except for some after effects.

Kteacher, Merced, California, joined forum January 2011, enrolled July 20, 2011. DX’d SCC HPV - Spindel cell varient, perineural involvement. MIA IN 2012,, checked back in March 18, 2013. Since lasat post, “C” traveled up nerves to cheek to optic nerve. Right eye removed followed by chemo & radiation. Will retire. Bless you. Checked back August 23 and rec’d surgeries at Stanford Landranger, Michigan, joined forum November 2009, enrolled February 4, 2013. DX’d in May 2009 with SCC BOT stage 3 and one lymph node.

Laralyn, Los Angeles, California, joined forum April 2012, enrolled February 1, 2013. DX’d Stage IV SCC in left tonsil, HPV+. Radiation/Chemo completed June 1, 2012.

LaughingGirl, state unk, joined forum 02-2013, enrolled August 5, 2013. DX’d January 2013 Stage IV Right Tonsil w/intrusion to soft palate, SCC HPV. Treatment completed April 19, 2013.

LeoS2323, Liverpool, England, joined forum March 2012, enrolled on April 2, 2012. DX’d MEC stage 4, unknown primary, MET to lymph node. Had left sided neck dissection, tonsillectomy and BOT biopsy and all clear with NED. Checked in February 4, 2013 and having a happy, healthy and loving life.

Lola5071, state unk, joined forum April 2012, enrolled husband in March 11, 2013. DX’d SCC primary tonsil HPV+. Treatment completed December 2011, additional surgery in May 2012 due to necrosis. Due to problems, had more treatment. The March 2012 visit-throat was healed. Followup scan due in June 2013.

Longtermsurvivor, Arkansas, joined forum in March 2010, enrolled on January 11, 2012. DX SCC soft palate. Third cancer and still in treatment. Updated on February 1, 2013: Have some problems, but tolerable. Trismus opening about 20mm. Hard to chew and swallow so on soft/liquid diet.

Lorig01, Houston, Texas, joined forum July 2012, enrolled March 15, 2013, DX’d Stage III tonsil with one left lymph node. TORS surgery, all teeth removed, G tube inserted & removed 5 months later. Treatment completed September 2012. Doing well except with dry mouth issues.

Lorna1, St Louis, MO, joined forum 09-2013, enrolled 09-28-2013. DX’d Stage 4 tonsil in 2007. Hearing lost from chemo, cannot swallow from radiation & getting PEG. Vocal cords not working and restricted airways.

Luv2cut1, Myka Landry, Colorado, enrolled January 6, 2011. Husband DX SCC supraglottis in May 2008, recurrence in neck-March 2009. Checked in January 15, 2012, husband doing well 27 months out. Now in treatment for CLL (chronic lumphocytic leukemia). Checked in January 21, 2013. Complete remission. Overall quality of life good.

Luv4lacrosse, St Louis-Missouri, joined 07-2010, enrolled December 28, 2010. DX’d SCC right tonsil in June 2010, Reported in January 16, 2012 and almost 15 months NED. Checked in 12-21-2013.

MarineE5, joined forum December 2005, DX’d Base of Tongue cancer in 2004.

Mechanicman2, Washington DC area, joined forum July 2012, enrolled husband March 17, 2013. DX’d May 2012 w/mass at base of tongue/removed in April??. Had neck dissection-removal of tonsils, salivary glands, some nerve & lymph nodes. CT in February 2013 showed something in cheek. Had PET scan and probably need another CT. Awaiting report from Doctor on April 5.

Meinken, Georgia, joined forum January 2010, enrolled July 12, 2010. DX’d NPC in January 2007, enrolled July 12, 2010. After some absence, checked in February 4, 2013. At start of 2012, new growth of Maxillary sinus cancer. Had surgery and reconstruction of eye orbit. Had to remove upper gum and all upper teeth on right side. Took tissue/bone from right shoulder to rebuild. Three months later, found another growth behind right eye. Vision blur and may lose it. Good news came on February 1, 2013 and PET showed NED. (This story needs to be expanded and in a separate post. God bless)

Metro22, state unk, joined 04-2013, enrolled 12-22-2013. DX’d Jan 2013 SCC Stage 4, right tonsil and hypo pharynx. 15 teeth removed. Treatment completed July 2013 and taste bud returned mid October. 85% saliva.

Miccmill, Rochester, New York, joined forum May 2010, enrolled better half on April 7, 2010. DX’d Stage IV SCC unknown primary. Two years, 8 months out of treatment. Neck dissection for two lymph nodes and all teeth removed. Checked in 2013, Lost 83 lbs. Gained 40 lbs back with enough saliva to ignore water. Works full time. Just visited ENT surgeon and Onc…everything great and due for PET in July.

MICH4EL, Minneapolis, Minnesota, joined forum March 2013, enrolled June 23, 2013. DX’d March 7 2013 w/SCC Stage IV, BOT affecting lymph nodes both sides of neck. Rt tonsillectomy, BOT dissection & selective neck dissection both sides. Radiation completed June 9, 2013 with no chemo.

Michdjp, Staten Island, New York, joined forum September 2011, daughter enrolled dad on December 28, 2011. DX’d on 08-08-2011 w/tonsil and lymph stage IV. Treatment ended October 24-2011. Checked back in.

Mikemetz, Decatur, Georgia, joined forum November 2011, enrolled January 11, 2012. DX’d Mucoepidermoid in February 2009, Currently being treated for ORN, otherwise doing well, next scan in April 2012. Checked in on October 25, 2012. Had Debridement in April and again on this date. Still NED. Checked in March 20, 2013 and NED for almost 4 years.

Mrs.Sarge, State unk, enrolled October 24, 2012, joined forum April 2012, DX’d stage 1 SCC vocal cords, NED. Voice not the best but thankful. Checked in January 7, 2013 and voice better. Several scans and all NED. Rechecked in on January 21, 2013.

NeoTheron91, state unk, joined forum September 2011, enrolled March 12, 2013, DX’d stage 4 NPC in November 2011. Still surviving.

Netracer61, state unk, joined forum January 2011, enrolled on April 2, 2012. DX’d esthesioneuroblastoma in 2001. Recurrence and radical neck dissection, chemotherapy 2005. ENB recurrence, cheek, eye. Surgery and vision damaged. ENB recurrence, optic nerve, left eye, sinus w/surgery. At checkin on May 18, 2013, undergoing Proton Beam Therapy. Best Wishes.

Nick770, Columbus, OH, joined forum May 2012, enrolled August 30, 2013. DX’d May 2012, Stage IIIb, tonsil cancer; Metasis Sep 2012 to both lungs; Surgery/lobotomy Oct 2012 of R lower lung. Started taxetol/5FU in June 2013. Chemo had zero effect on new tumors. Currently no treatment, but possibility of new clinical trial in fall. Best wishes.

NJShore, NJShore, New Jersey, joined forum November 2012, enrolled Jan 7, 2013, DX’d October 11, 2012 w/Stage IV left tonsil cancer, metastatic to left neck. 3 involved lymph nodes of which 2 are extra capsular. Still undergoing treatment as of enrollment date.

Noellesmom enrolled Noellesjim, Alabama, joined forum August 2010, enrolled on April 2, 2012. DX’d inoperable advanced hypo pharyngeal and BOT cancer in April 2010. Checked in January 22 and June 21, 2013 and reported NED in November 2012. Had some after effects and separately treated for COPD and osteoporosis w/spontaneous fractures. Still unable to work.

NousDefions, state unk, enrolled January 19, 2013. DX’d June 27, 2012 w/T2N2CM0 Stage IV SCC, primary right tonsil. Left and right lymph node involvement. Treatment completed and given NED on November 16, 2012. Went into 1st surgery weighing 225 pounds and after treatment, weighed 165 pounds (-60 lbs). Feels great and look forward to deploying. TY if you are serving in the military. I also proudly served.

Olybee, Olympia, Washington, joined forum June 2011, enrolled July 21, 2011. DX’d state 4 HPV + tonsil cancer in April 2010. Surgery to remove tonsil and 35 lymph nodes. Checked in March 7, 2013. Still having difficulties with swallowing, dry mouth and issue with taste buds. Reported on 10-14-2013.

Ooo, Boston, Massachusetts, joined forum March 2012, enrolled on April 2, 2012. DX’d SCC oral tongue in February 2012. Tumor removed April 2012. Checked back in March 14, 2013.

Osmotar, state unk, joined forum July 2011, enrolled January 6, 2013. DX’d Stage 4a rt tonsil, 1 lymph node. Started chemo August 2011/radiation November 2011. NED when enrolled.

Pam M, Northern Kentucky, joined forum November 2009, enrolled January 31, 2010. DX’d SCC BOT pm October 24, 2009. Reported back on February 3, 2013 after MIA in 2012. doing well except minor post treatment issues.

Patricke, South Florida, joined forum Aug 2006, enrolled on January 19, 2012. DX’d Stage 4, base of tongue in July 2000. DX’d w/tumor at entrance to trachea in April 2011. Larynx removed. Checked in March 06, 2013 and life is good and hope we all keep movin forward.

Pattyanny, New York, joined forum July 2009, enrolled November 27, 2010. DX’d Undiagnosed primary head and neck in June 2009. Enrolled November 27, 2010. MIA in 2013 and checked back in on February 10, 2013

Peggylulu, Texas, joined forum December 2012, enrolled February 2, 2013. DX’d SCC on scalp in 2011. Surgery in December 2011. DX’d SCC lump on neck, 3 lymph nodes removed July 2012.

Phranni51, Kalispell, Montana, joined forum March 2012, enrolled, April 2, 2012. DX’d NPC Stage III, T1N2M0 on March 26, 2012. Checked in January 18 and May 26, 2013.

PJ47, Wilmington, NC, joined 09-2013, enrolled 12-18-2013. DX’d 08-01-2013 w/BOT SCC, Stage III T1N1M0, HPV 16+. TORS surgery to BOT & 22 nodes removed on 09-06-2013. Declined chemo.  Still in radiation till after Xmas. Complications after 2 feeding tube surgeries.

Postie65, Saskatoon, Saskatchewan, Canada, joined forum February 2013, enrolled February 12, 2013, DX’d Novembe 19, 2012 w/early Stage 2 SCC of tongue. Had partial glossectomy and removed part of tongue. Still undergoing treatment at time of enrollment.

Rachel12srsuv, Fairless Hills, PA, joined forum 02-2013, enrolled 03-08-2013. DX’d Stage 3, NPC in May 2000. Radical neck dissection, right side involving 2 lymph nodes. NED on 08-28-2000. In 13th year and recently DX’d w/Dysphlagia. No food of fluid orally till retrain swallowing.

Ratface, Chicago, Illinois, joined forum 08-2009, enrolled. DX’d July 2009 BOT, T1N2BMX, Stage IV-BOT-2 nodes right side, selective disection. 11-30-09 9 nodes removed. Checked in 09-25-2013 amd getting readu for another colc, cold winter.

Redbanker, New Jersey, joined forum May 2011, enrolled on January 21, 2012. Nancy enrolled BF. DX’d SCC BOT HPV + T1N2a, Stage IVa on March 2010. Checked in February 1, 2013. Taste back and no saliva problems. Reported on 12-28-2013 that had CT previous day. Thyroid probably failing and ear buzzing. Taste at aboutd 98.5%.

Reuben and Jude, La Palma, California, joined forum April 2013, enrolled June 23, 2013. DX’d Stage 4 left tonsilar cancer to left lymph node. Treatment completed and using PEG. Having side effects associated with cancer.

Revbyrd, state unk, joined forum December 2013, enrolled January 6, 2013. Had sore throat for 8 years and DX’d October 2013 with stage 4, SCC right tonsil and 2 lymph nodes. Undergoing radiation and chemo at time of enrollment. Doing okay.

Roar, state unk, joined forum March 2013, enrolled May 19, 2013. DX’d unknown primary. 37 cisplatin partial neck dissection.

Robswife, joined forum March 2013, enrolled March 8, 2013. Wife enrolled husband DX’d SCC left tonsil, 4 lymph nodes, 2 on other side. Undergoing treatment at time of enrollment.

Rush1958, Kansas City, Kansas, enrolled July 20, 2010. DX’d SCC base of tongue January 12, 2010. Checked in January 21, 2013.

RushFan, Cypress, Texas, Joined forum August 2010, enrolled August 3, 2010. DX’d HPV=T) N2b MO unk primary in January 2010, . Checked in January 11, 2012. Regained 25 of 35 pounds lost. Checked back in June 23, 2013 and weight holding steady. Taste back to 99%.

Sabriene, Branson, Missouri, did not enroll, but commented on a posting by Duggie 88 of having similar type cancer and treated at same facility.

Sam999, New Jersey, joined forum March 2012, enrolled June 26, 2013. DX’d Stage I, SCC of tongue, HPV. Tongue surgery and radiation completed on June 27 2013.

Sassysric, Cape Cod, Massachusetts, enrolled January 21, 2013. Boyfriend DX’d SCC base of tongue w/1 lymph node on November 2012. Treatment will end on January 31, 2013.

Scottied, Virginia, joined forum 11-2010, enrolled December 28, 2010. , SCC base of tongue ending treatment in December 2009, enrolled, December 28, 2010. MIA in 2012, but checked back August 29, 2013 w/all things good, 99% back to normal.

SeenanN, Maryland, joined forum October 2009, enrolled July 21, 2011. DX’d 2004 NPC stage 4 metastasis to lung. After some absence, reported back on February 5, 2013 with being able to walk daughter down the aisle, seeing children complete school and seeing the smiling face of his lady.

Sheilarhc, Chicago, Illinois, joined forum January 2007, enrolled May 22, 2013. DX’d Hemangiopericytoma, left cheek in October 2006. Tumor removed same month. Post treatment with dental problems and no saliva.

Shoeloy, Cypress, Texas. Joined forum May 2011, enrolled January 5, 2012. DX’d hypopharyngeal SCC Stage 3 in December 2010, Completed treatment in April 2011 and NED as of this date. Checked in July 15, 2013 and NED. Great comment on “God is Good”.

Silver Foxette, state unk, joined forum November 2009. Reported by Pam M on February 3, 2013 that cancer has recurred and will start chemo this month.

Skiffin16, Lakeland, Florida, joined forum 09-2009, enrolled January 31, 2010. DX right tonsil, January 2009. Reported in January 4, 2012 w/status of finz2left ~ Lloyd, j3rey ~ Mark, irishgypsie ~ Charles (all doing okay). Checked in January 18, 2013 and all clear.

Soccerfreaks, not enrolled, but posted on welcoming Sash back. I may have missed enrollment, but he has been around a long time.

Sooner79, state unk, joined forum January 2012. Had not enrolled in Roll Call, but reported on February 5, 2013 that she was NED and pet scan due the following week. Our apologies for not listing you previously since roll call is voluntarily and information is extracted only from the roll call listing.

Sumarah8, state unknown, enrolled Januay 5, 2012. DX September 2011 with NPC, Stage 2b. Treatment until February 2012. Checked in January 8, 2013; struggling to gain weight but still okay.

Sunshine_6, Stanford, CA, joined forum 03-2012, enrolled August 23, 2013. DX’d T1N3 METs to both sides of lymph glands. NED September 2012.

Sweetblood22, Pennsylvania, enrolled March 18, 2010. SCC HNC unknown primary stage 4 DX December 2008. Checked in January 3, 2012, everything appears okay. January 2012 is 3rd anniversary.

TheOtherDitto, state unk, enrolled January 21, 2013. Reported Ditto1 DX’d w/stage IV, BOT, multiple lymph nodes on both sides in March 2012. Treatment completed and unofficially all clear. Follow up biopsies due on January 26, 2013. Best wishes.

TiaY, medically treated at Little Rock, AR, joined forum July 2012, enrolled May 29, 2013. DX’d ENB July 2012. Surgery September 25, 2012 and removed 2 very large tumors. Treatment completed January 2013. Unfortunately, two new tumors on scalp. Removed on April 29, 2013, then another tumor found. Many after effects from surgery to include losing nose, eye drips, permanent bald spots. Understandably, overwhelmed, angry and hurt. Saying a prayer at this moment. God bless.

Tim6003, McCall, Idaho, joined form November 2011, Checked in February 12, 2013. DX’ed October 2011 BOT w/one lymph node HPV+. Treatment completed January 21, 2012 and to date NED. Still no saliva, eat anything but struggle with breads/meat. 90% taste buds back. Back working full time. Checked back in ay 20, 3013 and plan on being around till 101 years old.

TracyLynn72, state unk, joined forum May 2013, enrolled May 26, 2013. DX’d MEC and tumor removed March 2013. Had to removed several teeth and 1/4 of jaw. Undergoing treatment at time of enrollment.

Tuffenuff, Jacksonville, Florida, joined forum May 2012, enrolled March 11, 2013. DX’d in April 2012 w/Stage IV SCC, right tonsil w/mets to two lymph nodes. Treatment completed on August 3, 2012 and scans all clear so far.

Vee1, Southern California, joined forum Novemer 2012, enrolled February 1, 2013. Enrolling dad (94 yrs old) who was DX’d SCC floor of mouth. NED for 11 years, recurred in November 2012. Inoperable and no chemo.

Vermontgirl, Vermont, enrolled January 3, 2013. Husband DX’ed with SCC tonsils, Stage IV w/one lymph node on same side on November 19, 2013.

Vetorama, Venice, Florida, joined forum Sep 2005, enrolled Feb 12, 2013, DX’d Oct 2, 2012 w/Stage IV mandible and floo of mouth. Surgical excision and reconstruction. Still undergoing treatment at enrollment.

Victor53, Rhode Island. Lives in Costa Rica, enrolled August 5, 2008. Started Stage 4 treatment on April 4, 2008, chuckled on comment that chemo & radiation did not sterilize him. Has 5 year old son & 11 month old daughter. Checked in January 23, 2012; Announced he is on FB “face” on January 7, 2013.

VivianLee5689, state unk, enrolled January 21, 2013. Husband DX’d w/stage IV, BOT cancer. Also DX’dwith Primary Plasma Cell Leukemia, November 24, 2012. Cancer is not curable and given a 3% chance of living. Wishes he will be here for next roll call. FORUM USERS, PRAYERS NEEDED.

Wife for Life, Kansas City, MO, joined forum 02-2010, enrolled April 15, 2010. . Husband DX’d 11-06-2009, Stage IV, SCC w/primary BOT, MET to lymph & tonsils. MIA and checked back 09-24-2013NED and ran 5K on last birthday.

Wild willy, Harmony, North Carolina, joined forum June 2012, enrolled February 2, 2013. DX’d right tonsil cancer. Checked in July 31 w/no taste and about 70-80% saliva. Pain in neck/ear but doing well.

W6nnh, Oklahoma City, OK, joined forum July 2012. Checked in June 24, 2013 (no record of enrollment). Reported “Still Kicking”.

Wrhbounds, state unknown, joined forum January 2013, enrolled March 10, 2013. No details posted except “started this ride 4/99 still living a full and happy life”. Reposted 12-20-2013, stage 3, SCC in Feb 1999 so 15 yrs in Feb 2014.

Yensid683, Albany, New York, joined forum April 2012, enrolled February 1, 2013. DX’d on March 26, 2012 with IVa base of tongue, HPV+ w/left cervical lymph nodes involved. Chemo/radiation ended July 5, 2012 and returned to work in on September 4. NED in October.

Zinniemay, state unknown, posted February 3, 2013 that hubby back to Chemo. Head/neck cancer went to lungs and undergoing Chemo treatment.



Bany, Canada, 2008, Dad (TR2), SCC of the maxillary sinus (located near Canada). Enrolled on July 30, 2009.. Dad completed treatment 03-2009, Dad lost 70 pounds. Bany later reported that dad passed away on 11-02-2009.

BerefoodBob. There is no record of enrollment, but reported by CivilMatt on 12-13-2013 that he passed away on January 7, 2013.

Delnative, Delaware, Diagnosed Stage III SCC Right tonsil in 2008. Enrolled February 2, 2010. Reported by Skiffin16 on April 5, 2012 that he passed away.

Glenna M, New Hampshire, enrolled on 1-31-2010. DX’d SCC laryngeal and NSCLC Aden carcinoma in left lung in May 2009, Checked in January 16, 2012. Just finished chemo and waiting to start clinical trial w/Sinutinub for recurrence of NSCLC now in both lungs. No problems w laryngeal after 2 ½ years. Unfortunately, she lost her battle six months later in July 2012. May she RIP. Reported by Skiffin16 on February 1, 2013

Hunpot, Massachusetts, Mom passed away, August 18, 2008 (Squamous cell carcinoma top voice box). Checked in Jan 2009 Name Tracy

Jagged, Washington, Diagnosed Breast 2005-Esophagus 2007 and lungs 2008. Enrolled on October 29, 2010. Checked in on March 29, 2010. Unconfirmed that she may have passed away.

MOM674, Passed away in December 2008. Was a brief member, fought hard…reported by knobby

Mswijik, New York, husband Patrick diagnosed laryngeal stage 4 - September 2010, enrolled January 16, 2010.  Report on March 6, 2011 that Patrick passed away on February 17, 2011.

Robinleigh, Montgomery, Alabama, caregiver for Andy. Andy DX January 2011, SCC primary tonsil. Had surgery, metastasis to pelvic region bone, in clinical trial and fighting hard. Unfortunately, wife reported that Andy passed away in September 2012.

Vikeman10, Edina, Minnesota, enrolled October 30, 2012. DX’d December 2010 w/malignant neoplasm of posterior hypo pharyngeal, stage 4. Pet scan and NED on 10/29/2012. Happy to be still kicking. Me too J Checked in January 3, 2013. Reported by CivilMatt that he passed away a couple weeks after posting.

Wolfen, Scottsdale, Arizona, joined forum April 2009, enrolled March 10, 2013. Husband DX’d late October 2012 w/Stage IV BOT, NPC with lymph node on right side. Also DX’d with secondary primary, not MET w/cancer left lung. Due to medical complications, no cancer treatment at this time. Had 13 teeth extracted. Power port and G-tube placed. Already lost 60 pounds and very weak. Best wishes. Unfortunately, spouse reported in May 26, 2013 that he lost his battle on May 5, 2013. Our condolensces.



  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    checking-in from Albany, Oregon

    CivilMatt, felt lump 11-11-11, dx 12-23-11, stage Iva, scc, bot,1 lymph node, hpv+ (surgery, rads & Erbitux) 660 days post, lost 43 lbs, gained 20 lbs, saliva, dry mouth and taste challenged.  I am on the standard H&N plan seeking maximum recovery. 

    I see life differently now, wonder and tragedy are but a heartbeat away.  My H&N friends help keep me grounded.  You are all special in your own way.


    HAWVET Member Posts: 318
    CivilMatt said:

    checking-in from Albany, Oregon

    CivilMatt, felt lump 11-11-11, dx 12-23-11, stage Iva, scc, bot,1 lymph node, hpv+ (surgery, rads & Erbitux) 660 days post, lost 43 lbs, gained 20 lbs, saliva, dry mouth and taste challenged.  I am on the standard H&N plan seeking maximum recovery. 

    I see life differently now, wonder and tragedy are but a heartbeat away.  My H&N friends help keep me grounded.  You are all special in your own way.


    Checking in from Lihue, Hawaii

    Welcome back Matt.  I was diagnosed with NPC in January 1998 and completed treatment in June.  I have been fortunate to be around and now into my 16th year, but the after effects of the treatment has impacted on my life style.  My saliva is just about gone and taste about 50-60 percent.  When added to my COPD and aspiration problems, it would appear I would not enjoy life.  Not true.  I try to maintain a positive attitude and enjoy each moment.  It has not stopped me from going to Las Vegas.  I was fortunate to have made the military a career so my medical bills are fully covered when combined with Medicare.  Aloha to all.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Checking in from Atlanta, GA

    Checking in for husband, diagnosed with laryngeal cancer in 2010.  Underwent radiation, chemo, and then surgery for complete laryngectomy in 2011.  NED for one year.  In 2012 diagnosed with a second primary at the cervical of his esophagus.  Underwent a second round of radiation and chemo, surgery ruled out.  NED for 4 months.  Then reoccurred at cervical of esophagus and found cancer in right lung in January 2013.  Surgery ruled out and only thing offered was more chemo.  Husband declined.  Today he is still fighting the battle.


  • yensid683
    yensid683 Member Posts: 349
    Checking in from Albany NY

    SCC, BOT stage IVa in March of 2012, induction chemo, chemo/rads, two surgeries and finally NED.  Check ups continue to be clear, negative scan in October, dropped two of three doctors, two remaining issues, dry mouth that is slowly improving, and a life-long sensitivity to the sun for the skin on my neck, which makes the next bit of news a little startling, we're MOVING!

     Our new home will be in Winter Garden Florida!  So excited for a new start in a new home and new area.  Won't be long and we'll leave the land of cold, snow and confiscatory taxes!



  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Johnny



    Hondo: still here and doing OK. I am still having problem with the side effects of treatment but still working and doing what God has left me here to do.

    Chief Daddy Mike: last I talked to him he was in the hospital again; His health is going downhill. Please everyone keep him in prayer.

    Pumakitty: Kathy lost her Mom in 2013 and her Dad 2012 she has been through a lot in the last few years. Keep her in prayer please.


    God Bless

    Tim Hondo

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    Checking In

    Read the board daily, still have several side effects like most, but each day is a Gift.

    My Best to Everyone Here

  • ljoy
    ljoy Member Posts: 94
    roll Call

    Eight years out frm tonsil cancer and doing great. Still read the borad almost daily. Hope everyone has a healthy 2014.

  • hawk711
    hawk711 Member Posts: 566
    Hangin in there

    Still NED after 4 years, but now have ORN issues.  Radiation, the gift that keep on giving!  Enjoy every day without the dreaded "c".


    All the best in 2014 to us all,


  • hwt
    hwt Member Posts: 2,328 Member
    hawk711 said:

    Hangin in there

    Still NED after 4 years, but now have ORN issues.  Radiation, the gift that keep on giving!  Enjoy every day without the dreaded "c".


    All the best in 2014 to us all,


    HWT (Candi) checking in from St Louis

    Cancer of mandible 01/2012. Lower jaw replaced w/fibula. Rads and Cisplatin 05/2012. Recurrance 05/2013 around carotid (was there earlier in retrospect) but not picked up on scan at Barnes. Treated at Mayo w/SBRT. 12/2013 tumor gone but new tumor on opposite side. 01/2014 currently undergoing more chemo for microscopic cells then will have SBRT on new spot. Still fighting!

  • lorig01
    lorig01 Member Posts: 83
    Checking in

    Hi. 1.3 months NED and doing great. Wishing everyone a happy and healthy new year!

  • wmc
    wmc Member Posts: 1,804
    Checking in...New to the site

     They found my throat cancer July 29, 2013. when they tried to do a bronchoscope of my lungs. Could not get pasted my vocal cords. When I came out of the anaesthetic I was told, "You have Cancer". I did research and found where I wanted to go for treatment and the Doctor I wanted to do it,  I was lucky and made the right decision to go to Stanford Medical. Squamous cell carcinoma [T3 N0 M0] The tumor was removed Oct 2nd 2013, as was my vocalcourds so I had a total Laryngectomy with  neck reduction [86 glands], and i'm a neck breather but doing good.

  • PJ47
    PJ47 Member Posts: 376
    How do I correct or edit the roll call

    I declined chemo, but completed radiation on  Dec. 26, 2013!  Did not decline both until after Christmas, don't know where that came from.



    HAWVET Member Posts: 318
    PJ47 said:

    How do I correct or edit the roll call

    I declined chemo, but completed radiation on  Dec. 26, 2013!  Did not decline both until after Christmas, don't know where that came from.



    Thank you all for the updates. Specific responses as follows.

    HONDO. Thank you for the information on Pumakitty. She enrolled her dad in 2010, but never returned to provide an update. It is sad to hear about her mom and dad. I will update the listing. Hondo, you have been my inspiration. Since we both had NPC, I think of your situation when I believe I am starting to doubt myself. 

    PJ47. It was my error. In a rush to complete roll call, I tried to shorten responses. In your case, I meant “and radiation till after Xmas”. I revised it and hopefully, it is clear to the readers.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Checking in from the Shenandoah Valley, VA

    Dx'd SCC Head and Neck Nov, 21st 2012. Palatine tonsils, biopsies Dec 21st 2012, Lingual tonsils, biopsies, selective neck dissection, Feb 7th 2013, Emergency surgery, bleeding Feb 18th. 

    Tx N2b, MO Stage IV HPV+. Treatment staerted March 13th 2013. 6 weeks chemo/rads Cisplatin. Finished April 24th. Nearly nine months out and still recovering. Side effects as with most but dealing. Next check Feb 18th.

    Positive thoughts and prayers


  • SASH
    SASH Member Posts: 421 Member
    SASH still here

    Originally joined November 1999 as MonsterM.  Then retired that account and then rejoined as SASH.  I licked Stage 4 tongue cancer.  Simultaneous radiation and chemo then surgery.

  • Duggie88
    Duggie88 Member Posts: 760 Member

    Jeff is still present and occasionally accounted for.


    Life is good

  • catfish_58
    catfish_58 Member Posts: 138 Member
    LIVE from Waco,Texas

    Just checking in,SCC left tonsil,HPV+,stage III,33rads and 7 weekly chemo's of Cisplatin,Started treatment in 2-25-2013,finished treatment 4-29-2013,Am 9 months post now,Saliva very little,taste almost back to normal.

  • lornal
    lornal Member Posts: 428
    lornal update

    All the side effects I was having were not side effects after all. The are the effects of a new ssc stage 4 cancer. On thursday, I will have it removed as well as my voice box, lower throat (not sure what that means), and upper esophagus. The esophagus will berebuilt from a skin flap from my arm.  I pray that all goes well and I'll be able to check in next year.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Aloha Johnny

    Skiffin16 - John checking in, all good down South in Florida...

    I updated a few MIA on your other thread...

    Also, Sweetblood22 - Dawn is doing well.., a few bumps and bruises and issues. But she's dealing with it... My wife and I jusy had lunch with her at Disney recently.



  • j4mie
    j4mie Member Posts: 218
    J4mie checking in from Northern IL

    Checking in for Pat. Diagnosed Aug. 2013 Tonsil cancer stage IV. Tonsillectomy, and neck dissection completed in Sep. 2013, finished rads on Nov. 20, 2013. Recovering slowly, but noticing slight improvements each day.