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

HAWVET
HAWVET Member Posts: 318
edited December 2013 in Head and Neck Cancer #1

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.

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Comments

  • jbob1981
    jbob1981 Member Posts: 12
    New
    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
    Skiffin16 Member Posts: 8,305 Member
    jbob1981 said:

    New
    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

    Too Late....
    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
  • depressed63
    depressed63 Member Posts: 61 Member
    depressed63
    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
    connieprice1 Member Posts: 300 Member
    Connieprice1
    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.
  • Dave B
    Dave B Member Posts: 7
    Roll call
    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.
  • connieprice1
    connieprice1 Member Posts: 300 Member
    Connieprice1
    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
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    jbob1981 said:

    New
    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

    Jbob - waving up at you from NEPA
    I think Montrose is a couple hrs north of me by NY? I'm in Muncy, PA, just south east of Williamspot.
  • Larrykins
    Larrykins Member Posts: 38 Member
    Roll Call
    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.
  • kdwers
    kdwers Member Posts: 16 Member
    jbob1981 said:

    New
    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

    NPC, add me to the Roll
    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
    Skiffin16 Member Posts: 8,305 Member
    kdwers said:

    NPC, add me to the Roll
    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.

    Quite Similar...
    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
  • patricke
    patricke Member Posts: 570 Member
    Enrolling
    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
    Mikemetz Member Posts: 465 Member
    Please update roll call info
    Mikemetz. Decatur, GA 30033. Next scan is 4/2012. Everything else is accurate. Thanks.

    Mike
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Dave B said:

    Roll call
    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.

    I salute you Dave B
    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
  • ValerieMo
    ValerieMo Member Posts: 27
    Newly diagnosed...
    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
    Mikemetz Member Posts: 465 Member
    ValerieMo said:

    Newly diagnosed...
    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.

    Sorry, and welcome
    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
  • braziliangirl82
    braziliangirl82 Member Posts: 42
    Tongue
    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.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    ValerieMo said:

    Newly diagnosed...
    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.

    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
    ValerieMo Member Posts: 27
    Mikemetz said:

    Sorry, and welcome
    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

    Thank you!
    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!
  • ValerieMo
    ValerieMo Member Posts: 27
    Skiffin16 said:

    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

    Family
    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
    ValerieMo Member Posts: 27
    Skiffin16 said:

    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

    Family
    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.