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

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

CANCER SURVIVORS. Please enroll or check in for year 2013.

WE SURVIVED! Read about us and for the newbees, hope this forum brightens your day since a great percentage overcame this dreaded disease.

We have 97 folks who registered or checked back in. For those who have not checked in since January 1, 2012, you have been moved to the Missing list. (to be published in a few days)

We started this list a few years ago. It is a voluntary enrollment. H+N patients have had a very high survival rate and the enrollment/reporting would provide incentive and good news on our survival to those checking in for the first time. I am sure that many who failed to report back in are still around.

There may be others who post in this section and unless they enrolled, I have not included their names. We welcome your enrollment. As noted, please include your state, date diagnosed, type of cancer, brief description of your treatment and your status. After you have enrolled, we hope you will check back in at least once a year even if you had left this forum. A brief statement that you are still around and doing okay would suffice.

The date of enrollment will be different from date diagnosed. The enrollment date is when you registered for Roll Call, not when you registered to be in the forum.

THE SURVIVORS - 97 of us

Bigfuzzydoug, Mooresville-North Carolina, enrolled July 30, 2010. DX SCC above vocal cord July 2010. Checked in January 9, 2012, doing better than OK. Able to eat again and put back 17 pounds of lost weight. He is going through some final edits.

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.

Bjohn, Chicago, Illinois, 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.

Braziliangirl82, state unk, enrolled January 20, 2012. DX’d T1N0M0 right side tongue cancer in December 2011. Next appointment on February 10, 2012.

CajunEagle, Lousiana, 2009, checked in 02-03-2010, DX Stage 4, left tonsilar cancer in 2009. Enrolled on February 3, 2010. Checked in January 8, 2012 and doing well.

Christmas, California, diagnosed Nasopharyngeal in 2004, enrolled July 8, 2008, had been absent and reported back on August 22, 2010. Checked in January 23, 2011. Checked in January 22, 2012.

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.

Connieprice1, Texas, enrolled July 17, 2011. DX SCC stage IV, base of tongue in October 2010. Checked in January 17, 2012.

Cureitall66, Michigan, 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.

CynthiaB1, Buffalo, New York, DX’d May 2012 w/SCC nasopharynx, Stage III. Completed treatment October 21, 2012. Best wishes Cynthia. I completed treatment in June 1998 for NPC so great hope for a long life.

Dclear14, state unk, enrolled April 5, 2012, DX’d on 1/13/12 w/BOT cancer w/lymph node, State IV2BM0. Just finished chemo/rad at time of enrollment.

D Lewis, Sierra foothills, California, enrolled February 5, 2010. DX SCC base on tongue, January, 2010, checked in July 23, 2010. . PET-CT NED in October 2011. Few lingering effects of radiation, but all is well. Checked in January 4, 2012 and excellent.

DaveB, state unk, enrolled on January 18, 2012. Malignant CBT removed in 1990. Mets to lungs, spine and mediastinum discovered in 2003.

Davidgskinner, California, enrolled July 13, 2010. DX stage 4, SCC right tonsil. Checked in August 5, 2011. Checked in January 7, 2012, doing okay. Side effects discouraging and lot of depression, but seeing professionals. Wishing you the best.

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

Depressed63, Brookville, Ohio, enrolled by wife Donna, January 17, 2012. DX’d stage 4A cancer, date unknown.

Donnahamblin, Fairborn, Ohio, enrolled January 11, 2012 Husband DX September 16, 2011, stage 4, tonsil cancer, SCC and is HPV positive. Start radiation January 12, 2012. Also DX with Parkinsons Disease at age 45 in year 2005.

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!

Finz2lift, North Carolina, enrolled January 11, 2010. DX SCC base of tongue. Did not check in. Reported by Skiffin16 on January 4, 2012 that he is around and doing well.

Fire34, Illinois, enrolled March 17, 2010. DX unknown primary June 2009. Checked in January 5, 2012, starting annual checkups, so far-good.

Fisrpotpe, Champaign, Illinois, enrolled December 29, 3010. 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. Checked in April 2, 2012.

Fishmanpa, Front Royal, Virginia, enrolled February 1, 2013.  DX Tx N2b MO Stage IV November 30th 2012. About to undergo neck dissection (Feb 7th) and further biopsies. Treatment tentetively scheduled for beginning of March. 6-7 weeks rads and possible weekly chemo (Cisplatin).

GraceLibby, Renton, Washington, enrolled July 14, 2010. DX’d Stage 3 SCC, right tonsil primary. Checked in January 16, 2011. Reported in January 9, 2012. Had one year post treatment checkup in November 2011 and doing great. Saliva not good and worst is constant tinnitus.

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.

Greend, Prattville, Alabama, enrolled January 16, 2012, DX SCC Right tonsil, still above ground and enjoying life.

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 base of tongue January 2010, NED July 2011. Checked in January 4, 2012.

HAWVET, Hawaii, DX Nasopharyngeal January 1998, Enrolled in January 2008. Checked in August 4, 2011. Checked in January 1, 2013 and still okay.

Hondo, Lafayette, Louisiana, enrolled January 31, 2010, joined forum April 2009. DX’d Nasopharyngeal in November 2002. Having lot of problems w/radiation side effects almost 8 years later. Check posting below for more info. Checked in February 1, 2013.

Hwt, St Louis, Missouri, enrolled October 23, 2012. DX’d January 2012 w/cancer in mandible (lower jawbone). 19 hour surgery and recent scan - NED. Will start implants to replace majority of lower teeth removed during surgery.

Irishgypsie, Rochester, New York, enrolled on 07-11-2010. DX SCC right tonsil, Checked in January 16, 2012.

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!

J3rey, Florida, enrolled July 26, 2010. SCC left lymph node April 2010, Did not check in but reported by Skiffin16 on January 4, 2012 that J3rey is still around and doing well.

Jbob1981, Montrose, Pennsylvania, DX December 2009 w/malignant paraganglioma of right carotid artery w/lymph node involvement. Discovered in January 2012 that have mutation of the SDHB gene.

Jeepman, enrolled January 8, 2012, DX stage 4 SCC primary right tonsil/BOT. Neck dissection following rads showed NED. Also had abscess in neck.

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

Jim & I, registered on 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.

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.

Jtl, SW Florida, enrolled October 23, 2012. DX’d in August 2011 w/cancer of the or pharynx and one lymph node. One year post treatment and NED. No saliva, taste, dental or swallowing issues. Congratulations!

K9lover, tried to enroll on January 15, 2012 on another thread. Please post at the end of this thread if you have returned.

Katenorwood, Minnesota, enrolled October 23, 2012. DX’d with ACC adenoid cystic carcinoma of the right submandiblar gland. Had radical resect done, 7 nodes taken.

Kdwers, Texas, enrolled on January 18, 2012. Husband DX’d NPC, stage IV w/mets to lymp nodes/liver in September 2010. .

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.

Kingcole42005, California, enrolled January 3, 2011DX Mucoepidermoid Carcinoma in 2010.

Klynten, Clinton, Washington, enrolled January 10, 2012, DX November 2011 w/Stage IV Mestatic SCC, unknown primary, starting radiation in two weeks.

Larrykins, Europe, enrolled January 18, 2012. DX’d SSC left tonsil w/3node metastasis in February 2011.

LeoS2323, Liverpool, England, enrolled on April 2, 2012. DX’d MEC stage 4, unknown primary, met to lymph node. One tonsil to be removed April 2012,

Longtermsurvivor, Arkansas. Posted on October 27, 2011. Must have missed his enrollment. Enrolled on January 11, 2012. DX SCC soft palate. Third cancer and still in treatment.  Commented on post on February 1, 2013.

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, enrolled December 28, 2010. SCC right tonsil in June 2010, Reported in January 16, 2012 and almost 15 months NED.

MarineE5, state unk, joined forum December 2005.  DX 2004 Base of Tongue cancer.  Checked in February 1, 2013, doing fine.

Meaganb, Columbia, South Carolina, enrolled on October 24, 2012. DX’d March 2012 w/Adenoid Cystic Carcinoma. Tumor removed along w/47 lymph nodes. Clean MRI/chest X-ray in August 2012.

Mikemetz, Decatur, Georgia, enrolled January 11, 2012, DX 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

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.

Nankster, zip code 30033. Enrolled for wife on January 3, 2012. DX Adenoid Cystic Carcinoma and completed radiation December 16, 2011.

Netracker61, state unk, enrolled on April 2, 2012. DX’d esthesioneuroblastoma in 2001. Back for 3rd time. .

NJShore, New Jersey, 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, Noellesjim, Alabama, enrolled on April 2, 2012. DX’d advanced hypo pharyngeal and base of tongue cancer in April 2010. Checked in January 22, 2013 and reported NED in November 2012.

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.

Nwasen, Ohio, enrolled January 9, 2012, DX Stage 4, base of tongue w/3 lymph nodes in October 2010. Last treatment December 18, 2010, PEG removed July 2011. Grateful to be alive. Only posted “oops” on January 9, 2012

Olivia46, New Jersey. enrolled January 3, 2012. DX olfactory neuroblastoma (ethesioneuroblastoma) in the sphenoid sinus. Surgery in October and will start radiation therapy January 2012.

Oldpaint03, Utah, enrolled January 14, 2012 for husband Jack. DX w/stage 4 SCC BOT w/nodes on both side of neck. Completed 7 weeks chemo/35 rad treatments on January 15, 2011. Three Pet scans all clear for cancer, but having problems w/blood clot in jugular vein. Also had nerve damage. Still fighting, but unable to return to work due to dizziness.

Ooo, Boston, Massachusetts, enrolled on April 2, 2012. DX’d SCC oral tongue in February 2012. Tumor removed April 2012.

Osmotar (Linda), Arizona, enrolled January 5, 2012. DX June 2011 with SCC Rt tonsil, 1 lymph node. Completed chemo October 2011 & radiation in December 2011.

Palmyrafan, Ohio, enrolled January 11, 2012. DX 1994 multiple megiomas. Sinus surgery 1993, brain surgery 1994, Radiation therapy 1996, Sinus surgery 1997. Tumors returned in all areas that were resected and radiated. On W&W with upcoming sinus surgery. Have lost most of hearing and trying to preserve her vision. My prayers and wish you the very best.

Pascotty, Bunbury, Western Australia, enrolled January 7, 2011. DX’d SCC right tonsil in November 2009. Checked in January 8, 2012. 2 years/3 months survivor as of January 7, 2012.

Patricke, South Florida, 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 1, 2012.

Phranni51, Kalispell, Montana, enrolled, April 2, 2012. DX’d NPC Stage III, T1N2M0 on March 26, 2012. Checked in January 18, 2013. Finished rads in June.

Puggle, Pennsylvania, enrolled, January 4, 2012, caregiver for husband, DX June 2011, primary epiglottis with node involvement (1 side). Completed 32 rads and 3 chemo (cisplatin) Aug 2011. First scan post treatment shows NED

Rascal52, Michigan, enrolled January 17, 2012, DX SCC of neck on January 19, 2009, unknown primary

Ratface, Illinois. DX July 2009 BOT, T1N2BMX, Stage IV-BOT-2 nodes right side, selective disection 11-30-09 9 nodes removed. Checked in October 24, 2012 and getting ready for another horrible winter.

RayTodd, Checked in December 31, 2011. Cannot locate enrollment data, checked back in January 7, 2012.

Redbanker, New Jersey, enrolled on January 21, 2012. Nancy enrolled BF. DX’d SCC BOT HPV + T1N2a, Stage IVa on March 9, 2011.

RJC-still-vertical, Illinois, enrolled January 15, 2012. DX June 1991 w/SCC base of tongue. Non-operable chemo and radiation. Long term survivor and no recurrence except for issues from complications associated w/treatment. NPO (No food or fluids orally), Gastic (Gtube) insertion in stomach for nutrition, medication and fluids.

Rmdgy, Georgia, enrolled December 28, 2010. SCC right tonsil in 2009, Checked in January 4, 2012. Scans clear and NED.

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, enrolled August 3, 2010. Diagnosed HPV=T) N2b MO unk primary in January 2010, . Checked in January 11, 2012. Regained 25 of 35 pounds lost. Saliva doing well and taste back to normal w/exception of sweets. Minor issues with jaw still tightening and w/tinnitus.

Sash, Florida, enrolled August 24, 2008. DX SCC base of tongue September 1999. Checked in March 4, 2012

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.

Shoeloy, Cypress, Texas. Enrolled January 5, 2012. DX hypopharyngeal SCC State 3 in December 2010, Completed treatment in April 2011 and NED as of this date. Checked in March 4, 2012 and feeling good.

Skiffin16, Lakeland, Florida, 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. May have missed enrollment, but he has been around a long time.

Staceya, Whitefish, Montana, originally from Brooklyn, NY, enrolled February 2, 2010. DX stage 1 NPC in 2009, Last scan December 2011 - NED. Checked in January 4, 2012.

Stevenl, Fort Worth, Texas, enrolled January 31, 2010. DX SCC right tonsil. Checked in January 9, 2012 and doing well.

Sukichu61832, Danville, Illinois. Enrolled January 9, 2012, DX September 9, 2011 w/stage 3, SCC left tonsil. Surgery removed on 10/4/1011. Started radiation in November 2011 and still have four more treatments. Lost weight and have issues with shoulder/arm due to surgery.

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.

Susan0803, New Jersey, enrolled January 20, 2011. Husband Joe, DX’d SCC of left tonsil (primary tumor)-August 3, 2010, Reported in January 11, 2012. All news good, no scans needed in foreseeable future, weight back up and eating normal. Still have hearing loss and tinnitus still bad..

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.

Timreichhart, Ohio, enrolled January 16, 2011. DX NPC March 2010. Checked in January 6, 2012. Still dealing with lung problems and other minor ailments, but otherwise okay.

Tommyodavey, Las Vegas, Nevada. DX October 2011 w/Mucoepidermoid Carcinoma. Tumor on base of tongue removed November 9, 2011. Scheduled for radical/modified dissection on January 11, 2012. Checked in on January 7, 2012.

ValerieMo, in military, enrolled on January 20, 2012. DX’d Olfactory neuroblastoma.

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.

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 book.com/victorb153” 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.

 MAY THEY REST IN PEACE

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.

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 recorrence of NSCLC now in both lungs. No problems w laryngeal after 2 ½ years.  Reported by Skiffin 16 that she passed away in 2012.

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

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.Condolences extended. Reported 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. Checked in on January 7, 2012.  Reported by Robin 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.  It was reported that Vikeman passed away shortly after posting his status.  May he rest in peace.

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Ruben and Jude: currently La Palma, CA (hopefully back to Medford, OR someday, we'll see) Being treated exclusively at the Veterans Administration Hospital, Long Beach, CA. Dx left tonsilar cancer stage 4 to left lymph node, HPV+ P16, determined by pathology of tonsils on March 21, 2013; tonsilectomy, PEG tube, 35 rads with concurrent Cisplatin chemo every 3 weeks; completed treatment 06/11/13. Still going thru side effects of chemo and rads, but is doing very well. Using PEG tube almost exclusively due to tongue issues, but they are beginning to resolve. Rarely drinks water due to mouth sores/pain from radiation. Had one minor bout of thrush at end of treatment, now resolved. Making saliva which at first was so thick he was gagging, now is thinning out. He's up everyday, showers and dresses. Takes frequent naps, gets 'a little grumpy' at times, is depressed, but calls on God for strength.

I comment occasionally, read a lot of posts, and am eternally grateful for the information, advise and experiences that appear in this forum. From one newby to the oldsters, a big Thank you for your posts and dedication to this site. Your words of encouragement and remedies are priceless.

God Bless. 

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

debbiejeanne:  cincinnati, ohio  dx 8/2009 with cancer of the voice box.  35 rad trmnts.  recurrence feb. 2012.  neck disection and complete larngectomy.  still have a hard time swallowing food, thx to rads.  get my throat dialated regularly.  had ned scan oct. 2012.

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

MICH4EL.  DX SCC STAGE IV.  BOT. lymph nodes affected both sides of neck.   Cancer discovered 3/7/13. transoral robotic surgery 4/29/13, including Rt tonsilectomy, BOT disection, selective neck dissection both sides.  Radiation completed 6/9/13.  No chemo.  Took Amifostene to protect saliva glands.

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

Chuck 'Rushfan' Byee checking in. Sorry, very rarely drop by anymore...I'm very blessed to be doing so well. 

Weight holding steady at 200lbs., saliva at about 80-90% though still get pretty darn dry at night. Have some stiffness in my jaw and have started to have more frequent neck cramping. Synthroid has been bumped from 75 to 100 mcg. Teeth are okay. Taste back to 99%...even sweets are good...which is not so good. Gotta watch it. 

Best to all, 

Chuck.

w6nnh
Posts: 14
Joined: Jul 2012

Joined July 2012

Oklahoma City, Ok

Still Kicking.

Sam999
Posts: 305
Joined: Mar 2012

 

Sam999, nj,  stage 1 squamous cell carcinoma of tongue, HPV-. toungue surgery to remove tumor followed by 30 rads finished june 27th 2012. 

Christmas
Posts: 91
Joined: May 2005

Sorry to have missed the roll call, but life has been good.  Very busy at work.  Dealing with problems, but all are manageable.

Wow - I was diagnosed ten year ago.

Christmas -

shoeloy
Posts: 70
Joined: May 2011

Two years and counting with NED. God is Good.

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

MICH4EL, Minneapolis, MN, joined March 15,2013.   SCC BOT metastatic to lymph nodes both sides..  Surgery 3-29-13:  biopsy tongue, tonsillectomy, and bilateral selective neck dissection .  Radiation x 30 completed 6-10-13.

catfish_58's picture
catfish_58
Posts: 123
Joined: Feb 2013

Enrolled 1-17-2013,age 55,Waco,Texas,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,go in tommorow for results of pet scan,Newbie but now hopefully enrolled

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

welcome, catfish!  good luck w/the scan results.  b sure 2 let us know.

dj

wild willy's picture
wild willy
Posts: 31
Joined: Jun 2012

location is harmony, nc   3.5 yrs out, cancer free. right tonsil stage 4.  no taste , 70 to 80% saliva . pain in neck and ear other than that doing well.

LaughingGirl
Posts: 6
Joined: Feb 2013

I don't post often, but lurk nearly daily (a bit of survivor guilt here as my treatment was blessedly easy compared to most, I believe)

Stg IV Right Tonsil with intrusion to soft palate, SCC HPV-.   DX Jan 2013, Treatment (Rads and Cisplatin) started March 2013, ended April 19, 2013.

sunshine_65
Posts: 15
Joined: Mar 2012

T1N3, mets to both sides of lymph glands; enrolled March 2013, treatment 33 rads & erbitux, NED September 2012;

working full time, Stanford CA. Glad to have you all here on roll call and on this website. You've all helped me

tremendously.

KTeacher
Posts: 907
Joined: Jan 2011

KTeacher, now retired.  I've been fighting since Aug. 2010.  From Central Valley, California.  Receive Surgeries at Stanford.  Looks like I'm getting ready for fight #4.  Trying to build up strength and immune system.

Bev Olaver

scottied's picture
scottied
Posts: 37
Joined: Nov 2010

Scottied, Virginia, SCC base of tongue ending treatment in December 2009, enrolled, December 28, 2010. Checked in August 10, 2011. All things good, 99% back to normal Life is Good!

nick770's picture
nick770
Posts: 195
Joined: May 2012

enrolling

Columbus, Ohio

May 2012 DX tonsil cancer satge IIIb 36 rounds of Rads, 2 cycles of cisplatin.  Peg-tube

Sept 2012 New DX of lung metasis (both lungs)

Oct 2012  Surgery/lobectomy of R lower lung. 

June 2013 Statrted taxetol & 5FU (got radiation recall), new peg tube placed. The chemo had zero effect on new tumors.

Currently  no treatmnets, however there is a possible new clinical trial(s) fall 2013

(Loving life & fighting daily) Using alternative solutions 

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

I am really sorry to hear the holding pattern you are in. I think mets to the lungs is the greatest fear we all try to keep under control as HNC survivors. Have you researched and tried any alternative therapies such as different diets and such? It seems you can complement  the science based therapies with others with no ill effect. As you have read here, others have had their cancers just stop after being given palliative prognosis. Best to you, don

wifeforlife
Posts: 189
Joined: Feb 2010

Kansas City MO, Husband Stage IV SCC with primary at base of tongue with metastasis to lymph nodes and tonsil confined to left side November 6, 2009. Surgery, Chemo, and radiation. Completed treatments. We are still NED...he ran a 5k on his last birthday!

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

way to go!!!

dj

ratface's picture
ratface
Posts: 1234
Joined: Aug 2009

Mark me down for 2013, getting ready to totally enjoy another cold cold Chicago winter!

lornal's picture
lornal
Posts: 213
Joined: Sep 2013

Lorna - STL MO - stage 4 tonsil in 2007 - treatment ended 12/2007.   Lost hearing from chemo, can't swallow from radiation damage and getting PEG next week.  Vocal cords not working and restricted airways, due to radiation damage.

Proud to report I'm STILL HERE to complain about all of it!

December 16 had a biopsy during esophagus dilation.  13th dilation this year - but first time w/ suspicious growth.

Found out December 19 that it was positive for squamous cell carcinoma

 

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

I've been a stranger, and I can say in my case, this is a good thing.  My husband has had a great summer - no issues since his mini stroke in March 2013.  So anyway, I'm just checking in, and Bob & Kathy are doing well.  I hope to be checking in a little more just to see how folks are.  I was so happy to read posts from so many familiar folks, though - it is a wonderful thing!

 

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Although I have not been visiting as often, am committed to updating this roll call in January 2014.  A brief update.  During this absence, my health has further declined.  Am probably the oldest person in this forum so that also contributed to the decline.  Moreso, it was the due to NPC and the radiation therapy in 1998.  

My dry mouth condition has worsened so am relying more on the liquid/soft food diet.  I am just fortunate to have complete medical coverage due to my career in the Army followed with a few more years with the postal service.  The VA does give me up to 3 cases of Boost each month plus all prescriptions at no cost.  I say this so veterans with disabilities can go to the VA for assistance.

If you have not checked in during year 2013, please do so.  This is a voluntarily enrollment program.  Appreciate all of you checking in and hope you will continue to do so when the updated list is published sometime in January. 

Aloha and at this time of the year, Mele Kalikimaka to all of you.

 

 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

To you also bruddah....

You've been on the island so long now that you are probably considered a local...

John

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Sorry to hear the dry mouth continues to get worse. After I lost the ability to swallow my saliva glands started to work again. That is bad for me because I can’t swallow it and I am always having to spit it out. Other than that I am doing well; God has been so good to me through it all.

PS: I lost a lot of friends this year to cancer, my boss his wife is at MDA Houston, they are only giving her 3 to 6 months.

God Bless

Tim Hondo

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Duplicate post

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

John, had a chuckle when you mentioned that I would probably be considered a local. I was borned/raised in the islands and was away only during that 30 years with the Army. I know you do like fishing, but that was not my like J . When growing up, I remember spending many nights with my close friends at the beach doing shore line fishing. Guess who was the first one to hit the rack?

Tim, I would consider my problems to be minimum as compared to what you have been faced with. I am just happy to be here more than 15 years after completion of treatment.  My problem is compounded with a COPD problem I had probably in my final year in the Army.  That too has gotten worse.

Like you, I have lost many close friends due to cancer. The most recent was a close friend who left us less than six months after being diagnosed.

But, back to the good things.  I thank the Lord that we three, plus the others on the forum are still around.   Enjoy the holidays.

jim and i's picture
jim and i
Posts: 1591
Joined: May 2011

Jim and I live in Ormond Beach Florida. Results of last PET scan show cancer now in bones of chest and left jaw. Increased pain meds. Jim still fishing and catching! Appointment with oncologist on  Jan 12, 2014 to review PET more in depth.

Debbie

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

BarefootBob (Robert Eckhart) passed away January 7, 2013

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

Kevin,  Waterford, MI diagnosed 9/2013 stage IV right tonsil 2 lymph nodes undergoing 35 RADS 8 weeks Chem ( carboplatin & taxol)

dunedintech's picture
dunedintech
Posts: 68
Joined: Apr 2013

Hello - enrolling. Diagnosed Jan 7 2013. SCC front left of tongue. Partial glossectomy plus modified neck dissection (27 lymph nodes removed) showed one node infected. 

6 weeks of radio plus 3 x Cisplatins. NED as from April 9 2013. 

No PEG but lost 23kgs during treatment so significantly trimmer these days! Back running, gyming, pilating and settling into abi normal life. 

Seasons greetings to all. 

CPC

 

 

 

 

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

For Pat Wink Diagnosed August 2013. Stage IV, left tonsil, one lymph node involved. Complete tonsilectomy and neck dissection (29 nodes removed) Sept. 6th 2013. Margins were clear. Completed 30 rads on Nov. 20th 2013. Going to see Med Oncologist on 12/19. hoping to hear NED.

Jamie

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Today, Dec.18 2013.  Wilmington NC.  Diagnosed Aug 1, 2013.  BOT SCC, one contralateral lymph node positive.  Stage III T1N1M0, HPV 16 +.  Non smoker Non drinker of alcohol, health and exercise nut.  Had TORS surgery to BOT and neck dissection (22 nodes) Sept 6th 2013 at Vanderbilt.   Margins clear no perineural or vascular invasion.  The one lymph node had slight extracapsular extension, therefore radiation/chemo was recommended as the standard of care. Declined chemo.   Still in Radiation treatment til day after Christmas with TOMO/IMRT rad. tx.  Treatment delayed due to complications after 2 feeding tube surgeries and hyper sensitivity to the radiation.  

PJ

wrhbounds's picture
wrhbounds
Posts: 38
Joined: Jan 2013

Still Here

2-99 stage 3 SSC

11-08 fibula flap 

12-13 tube free eating soft foods

2-14= 15 years 

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

I may now be living in a warmer climate, but the battle is not easier. You have tried to kill me 3 times since 6-2010. Me 3, you ******, ZERO.

Kiss my white ass cancer!!

MIKE

fishmanpa's picture
fishmanpa
Posts: 1112
Joined: Jan 2013

I'll leave that to the cancer ~lol~

Congrats! keep kickin' white ass!

"T"

 

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

mike, i know that's right!  keep kick'n butt!!!!!  Merry Christmas and Happy, Healthy New Year.

God bless you,

dj

metro22's picture
metro22
Posts: 16
Joined: Apr 2013

 

Hello - enrolling. Diagnosed Jan  2013. SCC  stage 4 right   tonsil and hypopharynx. Active lymph nodes on both sides of neck. Sugery for all at Mayo in Phoenix. Then 39 Rads no chemo.   had 15 teeth pulled before rads - ones more likely to have problesm in years ahead. Finished treetmetn end of July. Taste buds came back by mid October. Not same as before but livable. Rad oncologist was good at shielding saliva glands so they are maybe 85%  or so as good as normal.

Redbanker's picture
Redbanker
Posts: 33
Joined: May 2011

 Things have been good since our last check-in.  Nick is 2.5 years out from the end of treatment and 3 years from the point he noticed that darn lump in his neck during the 2010 Christmas blizzard.  He just had a CT on the 27th so, of course, pins and needles until we get the word, but his previous one just before the two year anniversary was fine.  His thyroid is probably failing though his doctor is not ready to respond with medication.  Ear buzzing is just part of the new new, but not debilitating.  Taste is probably hovering at 98.5% and there's nothing that he won't eat--except for the stuff he never liked to begin with.  In summary, grateful for every day.

Nancy

 

DaveJay's picture
DaveJay
Posts: 8
Joined: Dec 2013

DaveJay, Geneva, Switzerland.  DX Nov 2013.  Lingual Tonsil, spread to left lymph node.  Surgery to neck Dec 2013, currently recovering from that.  Radiation and Chemo scheduled to begin in Jan 2014.   Still very new to all this.

DaveJay's picture
DaveJay
Posts: 8
Joined: Dec 2013

DaveJay, Geneva, Switzerland.  DX Nov 2013.  Lingual Tonsil, spread to left lymph node.  Surgery to neck Dec 2013, currently recovering from that.  Radiation and Chemo scheduled to begin in Jan 2014.   Still very new to all this.

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Johnson City TN Laryngeal cancer stage III Diagnosised June 2013, 37rads/3chemos Clear petscan in November 2013. It's only been 4 months since treatment ended. Only side effect now is larynx is still very swollen from the radiation so that I must have a trache for breathing. Haven't been able to speak since June but a little above a whisper now.  Also some edema on the neck (turkey neck) but have notice it already has shrunk down some. 

KB56's picture
KB56
Posts: 242
Joined: Apr 2013

Diagnosed with cancer in the right Tonsil on April 1st 2013, had tonsillectomy, 7 chemo (Erbitux) and 34 radiations that finished on 6/11/13.   I've had one clean PETScan and right before Christmas I got the results on my CatScan (NED) and getting back to my new normal.   Just dealing with the recurring Thrush and a few side effects from radiation but other than that doing great!

 

 Here's to a very Happy and very Healthy 2014!

Keith

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Thank you all for enrolling and updating.  Have family in town for the holidays so will probably post the new list after the middle of January.  As KB56 posted, many of us look forward for a Happy and very Healthy 2014 so I wish the same to all of you.  As we say in our part of the country, Hauoli Maka Hiki Hou.  Johnny

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

cking in.   cincinnati, oh   dx:  8/09 laryngeal cancer, 35 rad tx thru sept and oct.  clean until 2/12.  recurrence dx in feb 2012, had laryngectomy and neck disection on 2/28/12.  clean since.  problem with swallowing and can't fully lift left arm due to nerve damage but other than that, doing well.  i can even talk....lol.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Happy New Year to you also brother...

cureitall66's picture
cureitall66
Posts: 852
Joined: Aug 2012

Just checking in my loved one. He got the NED after treatment! Just celebrated 1 yr November 2013 (when tx ended)of NED! Doing well with some minor issues...canker sores, nerve/pain problems back of neck/down the arms. Living life the new abi-normal way! Loving life that much more!

Bart T
Posts: 10
Joined: Mar 2013

Staten Island, New York, enrolled 12/13, diagnosed 3/12, tongue cancer, hemiglossectomy, neck dissection, radiation, trial of chemo. Currently all clear, back to 100% of normal activities and lifestyle with only minor (but very annoying) side effects. 

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

:)  Life is good!

 

Charles

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