CSN Login
Members Online: 13

ROLL CALL 2012 - Updated as of January 16, 2012 (CLOSED 10/12/2013)

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

In year 2011, we had 89 folks who registered or checked back in. You only need to enroll and check in once a year. If you have not enrolled and checked back in this year (2012), please do so. Thank you. How to Enroll We started this list a few years ago. It is a voluntary enrollment for Head and Neck Cancer folks and you enroll in this thread. I noticed that H+N 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 of the 50 plus 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 checked in for the first time for Roll Call. Adamson 091654, state unk, HPV-16 neck cancer in January 2011. Tumor removed 01/03/2011. Enrolled January 24, 2011. Agatha, Toronto, Canada, DX stage IV left side of tongue in 2010. Enrolled on January 4, 2011. Adventurebob, California, diagnosed Nasopharyngeal stage IV in May 2010, enrolled August 21, 2010. Checked in January 20, 2011. Aeromech, state unk, DX stage 1 SCC right tonsil on September 24, 2011, enrolled July 21, 2011 Akotke, Alabama, DX tonsil stage 4b scc tonsil in November 2010, enrolled August 12, 2011. Army_Guy, Maryland, diagnosed SCC right base of tongue-April 30, 2010, left salivary gland-May 2010. Enrolled January 15, 2010. Enrolled January 16, 2011 Areomech, Cincinnati, Ohio, DX I1N0M0 on September 24, 2010, enrolled January 5, 2011. Checked in July 21, 2011. Arjenkins, state unk, enrolled dad diagnosed stage IV cancer base of tongue w/lymph node on both sides. Enrolled January 20, 1011. Arndog64, DX left tongue base tumor w/lymph node invasion on January 28, 2011. Enrolled April 18, 2011. Backachedp, Minnesota, DX ? on September 29, 2009, enrolled on July 24, 2010. Checked in August 13, 2011. Ballonk, Lousiana, DX SCC left tongue in 2001, enrolled on 02-04-2010. Checked in August 4, 2011. Bigfuzzydoug, Mooresville-North Carolina, DX SCC above vocal cord July 2010, enrolled on July 30, 2010. Checked in January 9, 2012, doing better than OK. Able to eat again and put back 17 pounds of lost weight. His book going through some final edits. 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. Caspercamp, McKinney, Texas, Diagnosed SCC right tonsil, stage IV on May 26, 2010. Enrolled January 3, 2011. 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. CLRRN, Maryland, reporting for partner Mike, DX SCC left tonsillar basloid, enrolled on 07-13-2010, Checked in August 7, 2011. Connieprice1, Texas, DX SCC stage IV, base of tongue in October 2010. Enrolled July 17, 2011. D Lewis, Sierra foothills, California, DX SCC base on tongue, January, 2010, enrolled February 5, 2010, checked in July 23, 2010. Checked back on January 16, 2011. Checked back in January 4, 2012 and all is well. PET-CT NED in October 2011. Few lingering effects of radiation, but all is well. Davidgskinner, California, DX stage 4, SCC right tonsil, enrolled July 13, 2010. 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, diagnosed SCC unknown primary in 2009, DX SCC, enrolled on 01-31-2010, checked back in December 29, 2010. Checked in July 15, 2011. Checked in January 5, 2012 and doing well. Debbiejeanne, Cincinnati, Ohio, DX larynx cancer in August 2009, enrolled on 07-11-2010. Checked in January 17, 2011. Denistd, state unknown, enrolled January 8, 2012, DX March 2009 w/larygeal cancer, stage 3, still going strong. Dennis318, Spring Hill, Tennessee, DX stage IV, throat cancer in November 2009. Enrolled on March 17, 2010, Checked in 07-12-2010 with update. Botched surgery when reported back on January 3, 2011 and will try hard to make positive strides in 2011. Rehired after losing job/works a few days. Making small, but positive steps. DJG1, Louisville, Kentucky, DX lymp node on right neck in April 2010, enrolled July 24, 2010. Checked in November 30, 2011. Dogsrule, state unknown, DX SCC unknown primary in October 2009, enrolled July 11, 2010. Checked in August 15, 2011 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. Dragons7-7-2010, Texas, diagnosed SCC right tonsil in July 2010, enrolled August 21, 2010, Checked in January 16, 2011 Ed_PortOrange, state unk, diagnosed SCC of Valledupar-December 2009. Enrolled on January 17, 2011. Checked in July 29, 2011. Ekdeennie, Oklahoma, diagnosed Mucoepidermoid carcinoma of hard palate w/growth into maxillary sinus-June 30, 2010. Enrolled on January 17, 2011. Finz2lift, North Carolina, DX SCC base of tongue, enrolled on 07-11-2010, Did not check in. Reported by Skiffin16 on January 4, 2012 that he is around and doing well. Fire34, Illinois, DX unknown primary June 2009, enrolled March 17, 2010, checked back in July 23, 2010. Checked in August 12, 2011. Checked in January 5, 2012, starting annual checkups, so far-good. Fisrpotpe, Champaign, Illinois, diagnosed 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, enrolled on December 29, 2010. Reported by Frank10G, Virginia, Checked in 02-03-2010, Diagnosed Stage 3 NPC 2009, Enrolled February 3, 2010. Reported by Hondo on December 17, 2011 that he is in treatment for second NPC and doing well. Glenna M, New Hampshire, diagnosed SCC laryngeal and NSCLC Aden carcinoma in left lung in May 2009, enrolled on 1-31-2010. Checked back in on January 1, 2011. Reported 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. GraceLibby, Renton, Washington, diagnosed Stage 3 SCC, right tonsil primary, enrolled in 07-14-2010. 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. 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 10, 2012 and doing good. Hal61, California, diagnosed stage 3 SCC base of tongue in November 2009, enrolled 03-29-2010, checked in August 6, 2011. 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, 2012 and still okay. Hondo, Lafayette, Louisiana, diagnosed Nasopharyngeal, enrolled on 01-31-2010. Second time in 2005 and last in March 2006. Checked back in July 25, 2010. Reported back in on January 20, 2011. Will be five years from treatment in March 2011. Checked in Aug 5, 2011. Irishgypsie, Rochester, New York, DX SCC right tonsil, enrolled on 07-11-2010. Did not check in, but reported by Skiffin 16 on January 4, 2012 that he is still around and doing well. Reported in January 16, 2012 and now accounted for. J3rey, Florida, SCC left lymph node April 2010, enrolled July 26, 2010. Did not check in but reported by Skiffin16 on August 4, 2012 that J3rey is still around and doing well. Jan Trinks, Atlanta, Georgia, posted as being in forum on August 12, 2011. Janymac, UK, DX in 2002, enrolled on April 18, 2011. Jeepman, enrolled January 8, 2012, DX stage 4 SCC primary right tonsil/BOT. Neck dissection following rads showed NED. Also had abscess in neck. Jim & I, registered on August 7, 2011. No information provided. Jimbo55, from Chicago working in Bangkok Thailand, SCC BOT in May 2010, enrolled July 22-2010. Checked back in July 16, 2011. Joe14, Rochester, New ork, SCC unknown primary in April 2010, enrolled July 22, 2010. Checked in August 7, 2011. Kent Cass, Quad cities, Midwest, NPC unknown primary in 2009, enrolled July 22, 2010. Checked in January 20, 2011. Checked in January 6, 2012, still dealing with teeth issues/neck spasms, but still okay. Kingcole42005, California, DX Mucoepidermoid Carcinoma in 2010. Enrolled January 3, 2011 Klynten, Washington State, enrolled January 10, 2012, DX November 2011 w/Stage IV Mestatic SCC, unknown primar, starting radiation in two weeks. KristynRuth, Texas, Enrolled January 6, 2012, DS SCC of a lymphnode, unknown primary, completed treatment October 25, 2010. Considered "cured". Kteacher, California, DX SCC HPV - Spindel cell varient, perineural involvement, enrolled July 20, 2011. Checked in December 27, 2011. Ktjt, state unk, diagnosed SCC NPC in May 2010, SCC on check, Mohs Sx, BCC Jan 2011 Mohs Sx, enrolled January 24, 2011. Kokom, state unknown, enrolled August 12, 2011, spouse treated for NPC in year 2006. Landranger25, state unk 2009, enrolled on 01-31-2010. Checked in January 24, 2011 Lena Rose, New Jersey, Husband DX w/ BOT SCC HPV+ in March 2010, Enrolled July 14, 2010. Checked back in January 16, 2011. 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 January 11, 2012, DX SCC soft palate. Third cancer and still in treatment. Luv2cut1, Myka Landry, Colorado, husband DX SCC supraglottis in May 2008, recurrence in neck-March 2009. Enrolled January 6, 2011. Checked in January 15, 2012, husband doing well 27 months out. Now in treatment for CLL (chronic lumphocytic leukemia). Luv4lacrosse, St Louis-Missouri, SCC right tonsil in June 2010, enrolled December 28, 2010. Reported in January 16, 2012 and almost 15 months NED. MarkN_Ct, Connecticut, DX SCC recurrent Tongue. Enrolled January 3, 2011. Meinken, Georgia, DX nasopharyngeal in January 2007, enrolled July 12, 2010. Checked in January 21, 2011. Miccmill, state unknown, reporting for spouse Glenn, DX with SCC on April 7, 2010, enrolled July 23, 2010. Checked in August 4, 2011. Michdjp, New York, daughter Michelle enrolled Dad on December 28, 2011. DX’ed with right tonsil and lymph stage IV, hpv. Mikemetz, state unknown, enrolled January 11, 2012, DX Mucoepidermoid in February 2009, Currently being treated for ORN, otherwise doing well, next scan 2012. Nankster, zip code 30033. Enrolled for wife on January 3, 2012. DX Adenoid Cystic Carcinoma and completed radiation December 16, 2011. Nidociv, Ohio, 2008, Checked in 12-11-2009. Diagnosed w/SCC left BOT. Completed treatment in October 2008. All scans have been clean. Only starting to eat now. Still w/PEG tube. Checked in November 30, 2011. 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. Oldejack, State and cancer unk. Reported 05-26-2009 only saying “I’m alive” Olivia46, New Jersey. DX olfactory neuroblastoma (ethesioneuroblastoma) in the sphenoid sinus. Surgery in October and will start radiation therapy January 2012. Enrolled January 3, 2012. Olybee, Washington, DX March 2011 on tonsil/lymph node. Enrolled July 21, 2011. 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. Osmotar (Linda), Airzona. DX June 2011 with SCC Rt tonsil, 1 lymph node. Completed chemo October 2011 & radiation in December 2011. Enrolled January 5, 2012. 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. PAM M, Kentucky, DX SCC BOT pm October 24, 2009, 2009, enrolled on 01-31-2010. Checked in on July 13, 2010. Update on January 4, 2010. Checked in October 30, 2011. Pattyanny, New York, Undiagnosed primary head and neck in June 2009. Enrolled November 27, 2010. Checked back in January 1, 2011. Welcome back. Checked in August 1, 2011. Posted on October 25, 2011 appreciating the list. Pascotty, Bunbury, Western Australia, diagnosed SCC right tonsil in November 2009. Enrolled January 7, 2011. Checked in August 12, 2011. Checked in January 8, 2012. 2 years/3 months survivor as of January 7, 2012. Paula002, Montreal, 2007, Nasopharyngeal , enrolled November 7, 2008. Reported by Soccerfreaks on November 30, 2011 that he was still around. 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 Rarph123 responded to an entry on January 17, 2011 but did not enroll. Rascal52, Michigan, enrolled January 11, 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 August 4, 2011. RayTodd, Checked in December 31, 2011. Cannot locate enrollment data, checked back in January 7, 2012. 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, SCC right tonsil in 2009, enrolled December 28, 2010. Checked in August 18, 2011. Checked in October 27, 2011. Checked in January 4, 2012. Scans clear and NED. 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. Ron49, San Diego, California, DX SCC Mestasized to left lymph node, path reported Epitheleal Neoplasm in December 2009. Enrolled on January 4, 2011. Checked back January 16, 2011. Rush1958, Kansas City, Kansas, SCC base of tongue January 12, 2010, enrolled July 20,2010. Checked in July 23, 2010. Checked back January 16, 2011. RushFan, Cypress, Texas, diagnosed HPV=T) N2b MO unk primary in January 2010, Enrolled August 3, 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, DX SCC base of tongue September 2009, enrolled August 24, 2008. Checked in okay, Jan 20 2009. Checked in August 10, 2011. Scambuster, Hong Kong/China, SCC left tongue in August 2009, enrolled July 22, 2010. Reported on Aug 5, 2011 by Skiffin 15 and Hondo that he left the forum. Reported by Hondo on December 17, 2011 that he is doing well working between Vietnam/Singapore and had no more problems with cancer. Scottied, state unknown, SCC base of tongue ending treatment in December 2009, enrolled, December 28, 2010. Checked in August 10, 2011. SeenanN, Maryland, DX 2004 NPC state 4 metastasis to lung, enrolled July 21, 2011. Shoeloy, state unknown, Enrolled January 5, 2012. DX hypopharyngeal SCC State 3 in December 2010, Completed treatment in April 2011 and NED as of this date. Shoemandanl, state unknown, enrolled January 5, 2012. DX March 2011. Had neck disection and 19 lympnoids removed. Pet scan was clear in November 2011. Scope also clear in December 2011. Skiffin16, Lakeland, Florida, DX right tonsil, January 2009, enrolled January 31, 2010, checked in July 23, 2010, rechecked on January 5, 2011. Checked in July 15, 2011 & Aug 5, 2011. Reported in January 4, 2012 w/status of finz2left ~ Lloyd, j3rey ~ Mark, irishgypsie ~ Charles (all doing okay) 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. DX stage 1 NPC in 2009, Enrolled February 2, 2010. Checked back in July 28, 2010. Checked back January 16, 2011. Checked in August 5, 2011. Last scan December 2011 - NED. Checked in January 4, 2012. Stevenl, Fort Worth, Texas, DX SCC right tonsil, enrolled January 31, 2010, checked in July 23, 2010. 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. DX September 2011 with NPC, Stage 2b. Treatment until February 2012. Enrolled January 5, 2012. Susan0803, New Jersey, enrolling husband Joe, SCC of left tonsil (primary tumor)-August 3, 2010, enrolled January 20, 2011. 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.. Swartpb, state unk, DX SCC right side tongue on July 21, 2010. Enrolled March 6, 2011. Sweetblood22, Pennsylvania, SCC HNC unknown primary stage 4 DX December 2008. Enrolled 03-18-2010. Checked back in July 23, 2010. Checked back in on January 5, 2011. Checked in July 19, 2011. Checked in January 3, 2012, everything appears okay. January 2012 is 3rd anniversary. Tanager75, Washington, diagnosed SCC left tonsil in July 2009, enrolled July 26, 2010. Checked in August 4, 2011. Terryscarlet, state unknown, DX SCC left tonsil in July 2010, enrolled January 1, 2011. Timreichhart, Ohio, DX NPC March 2010. Enrolled January 16, 2011. Checked in December 17, 2011. 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. Tonyanddenise, Central Ohio, DX primary in left tonsil, enrolled July 12, 2010. Checked back in on January 2, 2011. Vermont Liz, Vermont, husband DX with SCC, stage IV base of tongue in December 2009, enrolled January 5, 2011. Wife for Life, Missouri, husband diagnosed with stage IV SCC base of tongue. Enrolled April 15, 2010. Checked in January 20, 2011. Checked in August 16, 2011. The following 52 were once enrolled and have not reported back. Bigfuzzydoug, Mooresville-North Carolina, DX SCC above vocal cord July 2010, enrolled on July 30, 2010. Checked back in on December 29, 2010 Bughunter, Tennessee, Stage IV tonsilar, last treated 03/28/2007, Home St: Michigan, enrolled August 5, 2008. Byzas, New York. 2007, Checked in 05-12-2009, Left tonsil, stage III Clearblue, state unk, for wife, DX SCC base of tongue in 2001, Esophagectomy in 2008, partial larpharingal + lobotomy lung on October 2009, enrolled July 13, 2010. Craig_Griffin, Indiana, 2008, Mass Squamus Carninoma (tongue base), checked in Feb 4, 2009 Cwcad, state unknown, checked in 01-31-2010, DX ge IV tongue cancer, in 2007, Enrolled January 31, 2010. Cwctcher, Virginia. Tonsillar in 1997, enrolled November 6, 2008 Davidgskinner, state unk, DX stage 4, SCC right tonsil, enrolled July 13, 2010. Delnative, Delaware, Diagnosed Stage III SCC Right tonsil in 2008. Enrolled February 2, 2010. Devildawg, Michigan, 2004, Nasopharyngeal. Enrolled August 29, 2008 Doitforj, Georgia, Checked in 02-01-2010, DX SCC base of tongue and neck in 2009, enrolled on February 1, 2010. Douglas08, state unknown, diagnosed stage 4 SCC sinus, enrolled August 21, 2010 Fbcuthguy, Tennessee, 2009, diagnosed SCC unknown primary Stage IV in 2009. Enrolled on March 16, 2010. Fishinggirl, State Unk, 2009, Checked in 11-27-09. Last radiation Oct 09, diagnosed w/ squamous cell carcinoma (Cindy) Garyr, New Mexico. 1999, Throat & Lymph glands Jestawoman, Oregon, 2006, Checked in 12-01-2009. Reported brother Troy with NPC in 2006. In treatment for past six months. Recurrent NPC, stage IV. Geezer, Florida, Tonsilar in 2006, enrolled August 5, 2008 Jagged, Washington, Diagnosed Breast 2005-Esophagus 2007 and lungs 2008. Enrolled on October 29, 2010. Checked in on March 29, 2010. 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. Jkinobay, Arizona & Mexico, HPV16 positive lymph nodes in 2007, Enrolled April 21, 2009, checked in July 27, 2010. Jodyman, Texas, 2008, Current, squamous cell carcinoma at base of tongue. Lung Cancer in 2005. Enrolled August 30, 2008 Kimba1505, Pennsylvania, partner with SCC left tonsil April 13, 2010, enrolled July 20, 2010, Checked back in July 20, 2010. Lady4darknight, Mtn Grove, DX mass base of tongue, B lymphoma BOT and both tonsils in August 2008, enrolled July 11, 2010, checked back in July 23, 2010. Ljoy, Sauk Rapids, MN, right tonsil cancer in 2005, enrolled August 20, 2008, checked in 01-31-2010, doing fine and no signs Lolojldunn, Montana, 2007, Stage 4 Tonsilar (last treated 8/16/2007) Lorileona, Wisconsin, 2005/2008 Wife of Ron w/Tongue and lymph nodes (Spouse) Luckyfl, 2009, Checked in 05-13-2009, Just started, left tonsil and lymph. Nodes removed pass Monday, Name: Roxie Marymoo, Alabama, 2008, SCC of tongue and lymphnodes current at time of posting, enrolled August 28, 2008 Marywiz15, Colorado, 2007, epithelial myo-epithelial carcinoma Michelle H, state unknown, diagnosed cancer on base of tongue, enrolled August 21, 2010 Micktissue, Sonoma County, California, DX unk suspect Nasopharnyx December 2009, enrolled March 20, 2010, reported in July 23, 2010., 2008, Mikki332, South Dakota, husband Gary w/SCC base of tongue in October 2010, enrolled December 28, 2010 MLC53, State Unk. 2007?, Checked in 11-27-09. Had been 2 1/2 years since post treatment. Moondreamer, Phoenix, cancer unk, Originally from Indiana, checked in 02-06-2009. Caregiver, daughter in law brain/bone Morris, Michael "Mick", California, diagnosed Stage IV unknown origin in 2009. Enrolled January 31, 2010. Naturenaw, North Carolina, diagnosed SCC in tonsil in 2005. Enrolled on April 14, 2010. PBAILEY, Virginia, 2008, Checked in 03-25-2009, named Patti. Operation in November 2008. Esthesioneuroblastoma. Followup radiation should be in June. Checked in 07-25-2009, last MRI good Pie123, State unk, 2007, Squamuous cell cancer behind the left tonsil, enrolled August 25, 2008 Pmfennell, NE/Florida 6 mos, Checked in 07-24-2009 after 6.5 years clear, Name: Pete Pumakitty, Virginia, father diagnosed cancer base of tongue in March 2010, enrolled July 22, 2010. Sassyque-Betsy, Pennsylvania, 2003, Cancer of the tongue, Checked in 01-22, Steeler fan, Checked in 07-29-2009 good and steeler fan SIRENAF42, Texas, 2008, Checked in 02-06-2009, Esthesionueroblastoma of the Ethmoid Sinus and Naspharnyx,, Name Sienna Finch. Checked in 03-25-2009, doing okay completed June 2009. Followup. PET and CT were clean. (John) Silver_Foxette, Indiana, DX vocal cord cancer in January 2009, also 30 year cerval cancer survivor, enrolled July 31, 2010. Slickwilly, Michigan, Large B-cell lymphoma, cancer from sinus to jaw bone in 2003, enrolled, August 7, 2008 Checked in 01-20-2009 Smithmama2, Georgia, 2009, Checked in 12-06-2009. Husband Kevin diagnosed Stage 4 SCC in base of tongue. Early December 2009, had clean PET/CT scan. Completed treatment in October 2009. (Karen) Souplady, Washington, 2009, Tonsil Stage 4 removed last Monday, checked in May 13, 2009 TereB, Houston, Texas, Milignant Paraganglioma (started as glomus jugulare tumor) in 1987, enrolled August 6, 2008. TIM_WWJD, Oregon, 2009, Checked in 01-31-2010. SCC Stage 4, left tonsil, last ENT clear, chest X-Ray clear. Was removing port in early February. Tom55, Michigan. 2006, Medullary thyroidTootsie47, Oregon, 2009, enrolled November 7, 2008. Checked in 01-31-2010, husband Dx June 2009, occult primary, clean scan 12-2009Train-nut, Oklahoma. 2007? Checked in on 01-31-2010, SCC of the hypopharnx. Thanks for keeping tab. It's great to see such a long list. Still doing well. Keeping on eye on my teeth. Otherwise, I'm putting on too much weight. I may have to increase dosage of thyroid medication. Trainnut, Tulsa, Oklahoma, hypo pharyngeal cancer in 2007, enrolled August 5, 2008 Wboaz, Oregon, 2006 Squamous cell cancer of left tonsil. Checked in 05-12-2009. Spot showed in right lung at followup. Another scan In two months. Name Wayne Up2myneck, state unknown, DX July 2008, recur March 2010, enrolled July 23, 2010. Victor53, Rhode Island, Tonsil into base of tongue, Lives in Costa Rica, enrolled August 5, 2008. Had been actively checking in. Last check in on March 3, 2010 and hanging tough. MAY THEY REST IN PEACE 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. 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.

jbob1981
Posts: 12
Joined: Feb 2010

New

Jbob1981, Montrose, Pennsylvania. Diagnosed December 2009 with malignant paraganglioma of the right carotid artery with lymph node involvment. Surgery in December of 2009 to remove tumor, lymph nodes and resect carotid artery. 5 weeks of radiation treatment in January 2010. Since then I have been having scans every three months and have been stable. I was 28 when I was diagnosed. In January 2012 it was discoved that I have a mutation of the SDHB gene and this played a role in the tumor. All treatment and follow up has been done at the University of Pennsylvania in Philadelphia, PA. Name - Josh

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

You missed your chance until next year...so you better hang around until then.

LOL, just teasing Josh.....

Welcome and hang on for the ride...great folks here, I'm sure you'll like it.

Here's a SuperThread that has tons of great info as well....compiled by Sweetbllod (Dawn) from contributions of them many of us;

SuperThread

Best,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I think Montrose is a couple hrs north of me by NY? I'm in Muncy, PA, just south east of Williamspot.

kdwers's picture
kdwers
Posts: 16
Joined: Nov 2010

I'm adding to the roll my husband. We are from Texas. He was diagnosed September 2010 with NPC Stage IV with mets to lymph nodes and liver, both lobes. He was also Ebstein Barr positive. He began treatment with Chemo which consisted of, Cisplatin, Taxotere, and 5-FU, 4 rounds. PET after Chemo only before beginning radiation showed NED. We were referred to MD Anderson, where he had radiation, 35 treatments with Carboplatin weekly. He completed treatment 02/2011. He returns to MD Anderson every 3 months for follow up with PET and MRI. Next Pet/MRI` Monday, January 23rd.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Welcome....

Though I had STGIII Tonsil (primary) Cancer with a Lymphnode (secondary) involed, HPV+....

I had the same as for Tx...;

Nine weeks in three week cycles of Cisplatin, Taxotere and 5FU, then seven weeks of concuurent weekly Carboplatin and 35 daily IMRT rads sessions.

That was back between January - June 2009...

All clear so far, hoping to stay that way...at least for another 30 - 40 years....

Best,
John

depressed63's picture
depressed63
Posts: 39
Joined: May 2011

Caretaker in Ohio. Husbands stage 4a cancer is in remission. He had a PET a couple of weeks ago and they found a spot on his vocal cords. He had it scoped last week and the spot was gone. I thank God, family support and this great network through his journey.

Donna - Brookville, Ohio & no longer depressed!

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Connieprice1, Texas, DX. SCC stage IV, HPV Positive, Base of Tongue in Oct. 2010 enrolled July 17, 2011 " so far so good" clean scans as of Jan. 17, 2012 Would like to say "Hello" to all our brothers and sisters here.

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

To All the new people on the site. We want you to know that you can and will win your battle. Just take everything one day at a time and soon hopefully you will be well. We love everyone here, Homer and Connie

Dave B
Posts: 7
Joined: Nov 2010

Malignant CBT removed in 1990. Mets to lungs, spine and mediastinum discovered in 2003. No treatments but palliative radiation. Still taking one day at a time. I know, I'm luckier than I deserve to be.

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

I just read your personal information. Holy smoke, you've been living with mets for 9 years without adjuvent treatment? Wow. You are one remarkably resilien human being. Welcome to the board.

Best regards

Pat

Dave B
Posts: 7
Joined: Nov 2010

Hi Pat, Thanks for the welcome. I can't take any credit for the static condition I am in. Just enjoying it for as long as it lasts. You have been through a lot, yet your positive attitude shines through your messages. I admire and respect that. Dave

Larrykins
Posts: 38
Joined: Jan 2012

Larrykins Europe. Diagnosed Feb 2011. SSC left tonsil with 3 node metastasis. 35 daily IMRT sessions. 7 weekly cisplatine chemo. Selective neck dissection September 2011 with negative result. Next PET March 2012.

patricke's picture
patricke
Posts: 477
Joined: Aug 2006

I'm in sunny S. FL. I was dxed in 7/00, with base of tongue, stage 4 (found out about the stage many years later). I had surgery and then 35 sessions of radiation.
Last April (2011) I was diagnosed with a tumor at the entrance to my trachea, and in June the tumor was removed. My larynex was also removed at the same time becaus of the nature of the cancer, which is said to be a consequence of the radiation treatment.
Overall, I'm doing fine, one day at a time and, I'm just happy to be here.

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

Mikemetz. Decatur, GA 30033. Next scan is 4/2012. Everything else is accurate. Thanks.

Mike

ValerieMo's picture
ValerieMo
Posts: 27
Joined: Jan 2012

Hi I am Valerie. I am a Military Nurse and newly diagnosed with an Olfactory Neuroblastoma. I have an MRI scheduled for Thursday, and surgery soon. It was originally scheduled for Jan 30th, but that was when they thought it was an inverted papilloma.

I will take it one day at a time. I'm still in shock given that I just found out my biopsy results 2 hours ago.

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

I am sorry to hear about your diagnosis. Someone should write a book about what people felt and thought when they first heard the words "you have cancer." Once you are able to, take some time to look around the CSN web site and this discussion group in particular. You found us in two hours--it took me more almost three years to find these great people and to benefit from their stories, advice, and support. As you'll soon see, you are not alone with your diagnosis, and there is probably someone at every stage of the process that you are about to go through who can give you first hand information--even before you enter each stage. Best of luck going forward (actually, you'll find that luck has little to do with your success against cancer--it's more about being informed, making good decisions, listening to your docs, finding support, and keeping a positive attitude).

Mike

ValerieMo's picture
ValerieMo
Posts: 27
Joined: Jan 2012

Thank you! Being a nurse, I am surrounded by other nurses. They know I am a google-hound, and would look up everything and anything I could find on my diagnosis. Some words from the first website "rare" "20 year survival rate 50-80%"...a Case manager friend of mine said...don't google the diagnosis, google the support groups, that is where you will find people who have and are going through what you are....best advice ever!

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

WOW, valerie, that has to be a recor to find our site, LOL....

Welcome to the family....great people here, tons of info...

Here's a link or ours that can get youy started;

SUPERTHREAD

Thoughts & Prayers,
John

ValerieMo's picture
ValerieMo
Posts: 27
Joined: Jan 2012

I've had lots of adopted families over the years...being that I moved about every 2-3! It's great to have family. My parents are in Florida, so I love that I have Navy family, church family, and now this family to support me! Thanks for the superthread.

ValerieMo's picture
ValerieMo
Posts: 27
Joined: Jan 2012

I've had lots of adopted families over the years...being that I moved about every 2-3! It's great to have family. My parents are in Florida, so I love that I have Navy family, church family, and now this family to support me! Thanks for the superthread.

braziliangirl82
Posts: 42
Joined: Jan 2012

I´m T1N0M0 right side tongue cancer. 2 surgerys (partial glossectomy) + partial neck dissection (levels I, II e III). No nodes involved, that´s why I had no chemo or radiation. Diagnosed on december 2011, now just need to follow-up.

Next doc appt on february 10, 2012.

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

Thank you all for reporting back or enrolling on our H+N cancer rolls. I have not updated the roster yet, but will do so later. The superthread was mentioned, but do not forget to place your names on the map managed by Skiffin16.

To get to the "Where are you" map enrollment, here is the thread.

http://csn.cancer.org/node/234245

Redbanker's picture
Redbanker
Posts: 34
Joined: May 2011

My boyfriend (58) got his diagnosis on March 9, 2011. Started treatment on May 9 and finished June 28. 33 IMRT sessions and 3 Cisplatin--at an initial dose that would fell a horse. No PEG and lost about 15 pounds. High frequency hearing is gone--can't hear a digital thermometer or a whistling kettle. Some tinnitus but not constant. Weak and unfocused into September, but improving in leaps and bounds since. Taste buds pretty much back, but apples and oranges are no longer palatable. Sense of humor back in spades.

SCC BOT HPV+ T1N2a, Stage IVa
PET October 2011: NED (Though he did complain that he now checks his neck 4 times a day.)

Nancy

Christmas
Posts: 91
Joined: May 2005

Responding to Jan 2012 roll call.

Christmas

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

Started treatment stage 4 april 2008, 57 years old next month.... have a 5 year old son ... and a 11 month old daughter... all the chemo and radiation didn't sterilize me as i thought it would....so i haven't checked in in a while....

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

6 year old son ...1 year 11 month old daughter.....still hanging tough

 

my facebook is facebook.com/victorb153 for anyone

 

Netracer61
Posts: 14
Joined: Jan 2011

I was diagnosed with esthesioneuroblastoma in 2001. It is now back for the third time. This time it has managed to attach itself to the optic nerve and the muscle in my left eye. it is growing at the rate of 1.5mm every three months. I am just hoping that I can keep my eye over the summer. FIGHT FIGHT FIGHT NEVER GIVE UP!

LeoS2323
Posts: 143
Joined: Mar 2012

LeoS2323 - Liverpool, England; 34 years old, just been diagnosed with MEC stage 4 (unknown primary even in PET scan) met to nearby lymph node. Node has been removed, was originally thought branchial cyst was quiet on PET scan too. Set for surrounding node and one tonsil removal 23rd April 2012 then take it from there.

All the best of luck to everyone here

Leo

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

ooo; Boston, MA; diagnosed SCC oral tongue 02/2012; tumor removed 02/2012 (+ neck dissection); about to start chemo and radiation therapy. Age: 31. Name: Dre.

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

just checking in mostly because i don't know when the last time i did, nothing has changed except for survivorship duration.... now 16 years

john

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

Diagnosed on March 26, 2012 with Nasopharengeal Carcinoma (NPC)...Stage III, T1N2M0. This after what seems to be the normal route of "wait and see"...and antibiotics over the course of 3 months. Haven't began treatment, yet.

I'm 61 years old and live in Kalispell, Mt.

p

Noellesmom
Posts: 1306
Joined: Aug 2010

Dx April 2010 advanced hypopharyngeal and base of tongue cancer; 37 rads and 3 chemos; still NED April 2012

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

Thank you for posting. I will update the list in July 2012. If you have not yet enrolled, please do so. Request an update be provided at least once per calendar year. If you had not checked in for year 2012, please update your status. Mahalo and Aloha!

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Delnative, Delaware, Diagnosed Stage III SCC Right tonsil in 2008. Enrolled February 2, 2010.

Unfortunately, Jim ~ Delnative passed away recently, the beast got his body, but not his mind or sense of humor.

Best,
John

NeoTheron91
Posts: 76
Joined: Sep 2011

Hi

Diagnosed with Stage 4 NPC(T3N2M0) on August 26th, 2011. Had finished treatment(Chemo+Radiation) on 15th Dec 2011.
I had a PET scan last week and turned out NED. Next scan schedule for 3 moths time.

Cheers,
Neo

dclear14's picture
dclear14
Posts: 35
Joined: Jan 2012

dclear14, Robert diagnosed 1/13/12 with BOT cancer with lymph node involvement, Stage IV2BM0. Just finished 6 rounds of chemo and 35 rads (last one was this past Monday). Enrolled 4/5/12.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Since the 2011 Roll Call has suddenly become active. I thought I'd bump the most current back to the top...

Best,
John

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Howdy,

CIVILMATT , Oregon, dx December 23, 2011, Stage IVa, SCC, BOT, HPV+, & 1 Lymph node left side of neck, Enrolled 6:55pm (PST) October 22, 2012. Better late than never.

Matt

katenorwood
Posts: 1851
Joined: May 2012

katenorwood, Minnesota dx'd Nov ' 11 with ACC adenoid cystic carcinoma of the right submandiblar gland. Rare dx... Had radical resect done 12-23-11 (7 nodes taken, also right sub. saliva gland) rads 1-12. In what is deemed by drs. stable disease, as this is a slow growing one. Katie

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

SW Florida, DX Aug/2011, cancer of the oropharynx and one lymph node, Erbitux and Tomo Therapy(IGRT), I am one year post treatment, CT/PET scans have been NED and I have all of my saliva function and the majority of my taste, no difficulties swallowing or dental issues.

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

St Louis, MO DX Jan 2012 Cancer in mandible (lower jawbone) 19 hour surgery 01/31/12 4 days planned coma 2 weeks hospital. Jaw reconstructed from fibula in leg and titanium. Finished rads and Cisplatin Mid-May2012. CT w/contrast and most recently PET scan both NED. Waiting to do HBOT in Nov. and start implants to replace majority of lower teeth removed during surgery. Doing most everything I was doing before DX and TX. Energy level is good.

Dazey
Posts: 86
Joined: Sep 2009

posted on an "old" roll call - Dazey checking in. Three years (October 26, 2009) ago treatment was completed - latest cat scan (August 2012) and latest ENT scoping (yesterday) All remains clear! NED. This is definitely a long, never ending journey!

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Cureitall66, Michigan, Loved one is Male age 51. Dx August 21, 2012 Stage IV, SCC, BOT, HPV+, 1 Lymph node left side of neck. Currently in treatment. Tx October 8, 2012 with Chemo: Carboplatin plus Paclitaxel once weekly for 7 wks, Rads 5 days week for 7 wks. No surgery.

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Living in Chicago Illinois geting ready for another horrible winter and damn estatic about it!

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Are you still near the Hot Dog Place..., I'm getting hungry?

Nice seeing so many newbies on the list and the road to recovery.

JG

meaganb's picture
meaganb
Posts: 233
Joined: May 2012

Meaganb: Columbia, South Carolina. Dx: March 2012 Adenoid Cystic Carcinoma. Tumor removed along with 47 lymph nodes. Clean margins but decided to follow with radiation because of perineural invasion. Clean MRI and chest x-ray as of August 2012 & praying for many many more!

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Diagnosed March 28, 2012 stage IV laryngeal SCC with a few nodes involved on R side. Finished erbitux(chemo) and rads on June 28th 2012.
PET/CT NED 9/28/12
Hoping for many many more!

Mrs. Sarge
Posts: 199
Joined: Apr 2012

DX Stage 1 SCC of vocal cords. Had 38 rads only and finished June 15, 2012. Only lost 4 lbs. of which I've gained back plus some! Already been scoped twice...NED! and CT scan once...NED! Voice not the best but thankful I have one! Thankful for this forum.

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

Mikemetz is in Decatur, GA and still dealing with ORN. I had "Debridement, The Sequel" just today (10/25/2012). The first one was in April of 2012, with a tooth extraction, that never got on the right path to healing. Here's hoping the second debridement works and I can be pain-free in that area after more than 4 years. The good news is that I'm NED, with my next scan in December.

Mike

Vikeman10
Posts: 62
Joined: Jul 2012

Vikeman10- Edina, MN diagnosed Dec. 2010 Malignant neoplasm of posterior hypopharyngeal wall stage 4.
Chemotherapy of carbol and taxol from Dec.2010 thru March 2012.
Trachectomy April 2012,
May 2012 Erbitux 9weeks and 35 rads finished July 2012.
PET scan Oct. 2012 with NED 10/29/2012.
Happy to still be kicking!!!
Randy

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network