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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.

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

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

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

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

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

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

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

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

Grateful for every day and loving life.

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

Lisa

patricke's picture
patricke
Posts: 433
Joined: Aug 2006

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

PATRICK

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

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

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

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

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

Dual posting

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

i'm so sorry to hear of your loss.  I pray God will bless you wiht the strength to make it thru each day.  My thots and prayers are with you.

God bless,

debbiejeanne

AJW1966
Posts: 69
Joined: Nov 2012

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

Jennfer39's picture
Jennfer39
Posts: 22
Joined: Nov 2011

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

 

 

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Irishgypsie
Posts: 331
Joined: May 2010

:)

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

jen, what part of ohio, cincinnati here.

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

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

Larry

 

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

Olybee - Olympia, WA  diagnosed with Stage 4 HPV+ tonsil cancer 4/2010.  Surgery to remove both tonsils and 35 lymph nodes.  Underwent 35 radiation sessions.  Still hanging in there, still has some difficulty swallowing, dry mouth, but slowly getting stronger.  Still has issues with tastebuds.  Can taste the first couple of bites of most things now, so it does get better.

 

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

 Jeff from Bernville, PA.  Diagnosed with stage 4 throat cancer November 22, 2009 after a biopsy locally I was sent to Philadelphia to the Hospital at the University of Pennsylvania for surgery on December 18,2009 where they took out part of the base of my tongue, epiglottis, uvula, and some lymph nodes on the left side of my neck. Radiation from February 16, 2010 through March 30, 2010 at the HUP.  Although when I played basketball in high school we weren’t allowed to slam dunk, I finally got to do so to cancer allowing me to be late for my funeral. Now I enjoy today and look forward to tomorrow.

 

sabriene
Posts: 27
Joined: Aug 2006

Duggie 88

Not on here a lot anymore but just happen to notice the hospital you had surgery and treatment.  Glad to hear your doing pretty well overall.  Reason I was interested I was there the first part of 06.  I had almost the same problems as you and surgery to the left side of my neck.  Also, some lymph nodes removed and it was on both tonsils. I live in Branson, Mo. and my sister was a registered nurse living in South Carolina.  She called to inform me there a doctor using robtic laser surgery now in that hospital to remove a tumor at base of tongue.  Make a long story short I flew back for an opinion. They informed if I proceeded with this type of surgery I would have been number like 52 at that time. I was of course a little gun shy of it all which is normal.  They checked it all and took a lot of time for was there the better part of a day.  Conclusion was they felt maybe the tumor was a little to large at base of tongue and felt maybe my best shot was to proceed with just rad. & chemo.  They even took the time to check where I was planning here to have that treatment and visited with them which I sure appreciated. Treatment all went well here with the rad. & chemo until it all actually really kicked in.  The rad. was done by external beam and they warned me it would not be easy.  Actually, some of the recovery was living hell, and getting use to that peg tube took awhile.  Today still have problems with eating but can eat some items but mainly live yet on a soft diet.  Wonder how your doing with speaking for talking still is a problem.  Teeth were a major issue for the rad. doctor wanted them all removed but the oral surgeon said "healing would take in his situation to long and he needs to start treatment now".  I had all kinds of problems with the teeth, and lost the molars but still have some teeth at a very expensive price.  How have you gotten along if you still have them to date? 

It sure has crimped my social life, and that I deal with but just glad to be alive.  Must say I now have a different outlook on life but most of time stay pretty positive.  I think ones needs to keep as active as possible.  That is hard to do if one has been use to keeping busy for it sure is very important.

Like they say rad. & chemo is a gift, but seems it just keeps giving. 

Wish you the best, Roger

dlygoblue
Posts: 28
Joined: Mar 2012

Present!! Thank God! 

Here in DFW area of Texas. Diagnosed Olfactory Neuroblastoma May 2011.  Surgery, Radiation and Chemo at UT Southwestern.  So far, living cancer-free. Available to share my experience for those needing insight.

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

Bill here started this ride 4/99 still living a full and happy life

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

Bill here started this ride 4/99 still living a full and happy life

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

Wolfen here in Scottsdale, Az. New to board, but not new to CSN. Husband diagnosed late Oct. 2012 Stage IV BOT, Nasopharyngeal, with lymph node involvement on right side. Also, diagnosed with second primary, not met, Lung Cancer left lung. Due to other medical complications, just getting started with cancer treatments. He has just finished first five days of ten day rad session on lung. Had thirteen teeth extracted, power port and G-tube put in all at once. Chemo is to start a week after lung rads completed. Has lost 60 lbs. so far. Very weak and tired. Just taking it one day at a time as fine team at MD Anderson does their very best.

Luv,

Wolfen

shoeloy
Posts: 70
Joined: May 2011

It will be 2 years next month since I finished treatment. Dong well, with the usual side effects that we all share in some fashion.

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tuffenuff
Posts: 273
Joined: May 2012

TUFFENUFF. Jacksonville, FL. Diagnosed 4/2012, Stage IV SCC of right tonsil with mets to 2 lymph nodes. 70gy rads, 7 weekly doses of Cisplatin. Treatment ended on 08/03/2012. All scans have been clear so far!

lola5071
Posts: 16
Joined: Apr 2012

Add my husband to the list. Age 61 - DX October 2011, SCC primary tonsil HPV+. 35 Rads and 3 rounds of chemo. Completed treatment December 2011. Additional surgery in May 2012 due to necrosis. Excessive bleeding and throat not healing. 35 sessions in the hyperbaric(sp) chamber. Pet scan in Dec 2012 still had a couple of spots that lit up. Oncologist thinks it is due to lack of healing and scar tissue. March 2012 ENT visit - throat has healed. Area where tissue is tough and wants to keep an eye on it. Follow scan and ENT appt in June. Thankful for everyday we have! Cant wait until we get a clean scan!

 

NeoTheron91
Posts: 77
Joined: Sep 2011

Stage 4 NPC T3N2M0 , diagnosed and treated in 2011, Joining CSN in 2011, Still Survive ...

 

Have a great day everyone!

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

Joel, 42 years old in Rochester NY.  Diagnosed in April 2010 with SCC unknown primary.  Left neck dissection, tonsillectomy.  One tumor positive out of 40 taken, no extracapsular spread.  No further treatment.  Coming up on three years with nothing more found.  Very thankful for my miracle and for the group here and for my doctor and team at the Wilmot Center.

adventurebob's picture
adventurebob
Posts: 690
Joined: Jun 2010

Marin County California. Diagnosed May 2010 with NPC and mets to lots of bone. Lots of chemo and radiation in 2010. More radiation in August 2011 for pesky bone mets in right hip. More chemo and radiation September 2012-January 2013 for more pesky bone mets in sacrum. Hiking and backpacking through it all. Loving life. Married in the botttom of Grand Canyon October 9 2012. All done with recent chemo and rads. Doing well, loving life.

 

AB 

backachedp
Posts: 124
Joined: Oct 2009

Bob from Minneapolis diagnosed 9-29-2009.  33 Rads 3 Rounds Cisplatin 1 5-FU.  Finished 1-28-2010.  NED May 23 2010.  Was doing somewhat ok but never got his swallow back...is having Lung issues due to Aspirating seeing a Swallow Dr and is recommending Feeding Tube.  Treatment is University of MN Fairview Hospital.

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

Checking in for 2013!

With some little correction, my record should be:

Ooo, Boston, Massachusetts, enrolled on April 2, 2012. DX’d SCC oral tongue in February 2012. Tumor removed March 2012; IMRT + brachytherapy ended June 2012.

Thanks for doing this!

Dre.

lorig01
Posts: 66
Joined: Jul 2012

Hi.   Diagnosed July 2012 with Stage III tonsil cancer with 1 left lymph node. TORS surgery: tonsilectomy, neck dissection, all teeth removed, G-Tube inserted. Completed treatment September 2012.   G-Tube removed after 5 months. Recovering well except typical eating issues, (dry mouth).  Energy very good and hoping to get better everyday. All in all life is good!

mechanicman2's picture
mechanicman2
Posts: 16
Joined: Jul 2012

Hi, this is mechanicman2 which is my hubby. We live in the Washington DC area. We are also creepers. But it does help a great deal seeing what others like us are going thru. We love this forum. It has really helped us thru this trying time.  He was dianosed in May of 2012 with a mass at the base of his tongue. This was removed in April and a couple of weeks later he had a neck disection with the removel of tonsils, salivary glands, some nerve, lymph nodes, ect., followed by Rad. and Chemo. Had a CT done last month Feb. 2013 and they saw something on his cheek. His ENT felt it and said he didn't feel a mass, fingers crossed. We went last week and had a PET scan. Now just playing the waiting game with his ENT. He went to his Medical Oncologist last week and he said they saw nothing but we have a biopsy scheduled for this week. Also told him he has a broken glass nodule in his lung. Has anyone ever heard of this. He was just told he will have to have another CT done in 3 mo. Also in Physical Therapy for fluid build up in his face and not much motion in his neck. Getting better though. Anyway, hoping for good news from his ENT next month about the PET and the broken glass nodule. By the way I googled the broken glass nodule and didn't like what I saw, but I'm trying not to worry till we see his Dr. April 5th. I will post as soon as we here something  

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Jimbo55 checking in fresh off a clean PET/CT scan over the weekend. That makes 2 years and 7 months since the end of tx. Life is good. Cheers.

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Glad to hear you are doing well my friend. Great looking picture keep up the good work and may God bring you a blesssing everyday.

 

Tim Hondo

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

Thank you to all for posting.  Please continue to enroll or update.  I will eventually update the listings.  At present, am trying to determine a simpler method to update the master list.  Aloha

KTeacher
Posts: 882
Joined: Jan 2011

Thank you Vet.  I am still here.  Just finished a third go around, this time I had chemo along with radiation. 

KTeacher, Merced, CA.  Aug. 2010, upper right lip, scc; surgery, 1 inch of lip removed followed by radiation.

July, 2011  Left neck dissection followed by radiation.

Nov. 2012  'C' traveled up nerves in cheek to optic nerve.  Right eye removed followed by chemo and radiation.  This time I will retire.  I should change my login from KTeacher to Pirate Grandma, arrh.

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

Jimbo, so glad to hear your good news.  This is what we live for.  Prayers are with you to always b c-free.

God bless,

deb

Mikemetz's picture
Mikemetz
Posts: 333
Joined: Nov 2011

MikeMetz, Decatur, GA.  Dx MEC BOT in February 2009.  NED for almost 4 years.  Next scan in April 2013.  Hopefully over the hill with ORN symptoms--nothing new for several months now.

Netracer61
Posts: 14
Joined: Jan 2011

Diagnosed ENB dura breach , chemo, radiation, surgery 2001

Reoccurance and radical neck dissection , tomotherapy 2005

ENB reoccurance , cheek, eye , surgery, vision damaged. 

ENB reoccurance,  optic nerve, left eye, sinus, surgery currently under going  Protron Beam Therapy at HUPTI in Hampton Virginia.

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

Rob, caregiver Sandy, Dx: March 8, 2013, SCC Left Tonsil, 4 Lymph nodes, 2 on other side. T2-3,N2b,M0 HPV+. Currently undergoing treatment.

Weekly Taxol and Carbo, 35 rads

We are at week 6 and it is rough. Tongue lesions making it impossible to eat. Has feeding tube and continues to swallow water all day. 

Thank you for this group, they get me through everyday.

Sandy

 

Update:

6 months out of treatment and NED

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

I'm in- unknown primary- 37 rads- 3 cisplatin partial neck dissection 

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

BOT stage III w/ one lymph node HPV+. Dx October 2011 ..last tx January 2012.  McCall, Idaho! Plan on being around till I"m 101 years old, thanks to my Lord, doctors and family.

Best,

Tim

Chucka21
Posts: 1
Joined: Apr 2013

Not sure if this is where to do it or not but... Here I am.. Gald to be here great site that gives us hope.

From Vine Grive, KY, 

Squamous cell cancer, unknown Primary.  DX date Feb 21, 2013. Modified Neck Disection Mar 5, 2013.  Tonsilectomy April 14 2013.

Started Rads May 15 2013, Going to have 25 treatments of Electron Beam. 

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Chicago Illinois, 42 yr old single mother of two.  Diagnosed- Hemangiopericytoma (in left cheek) October 2006 (9 months after my divorce).  Tumor removal October 2006, 35 Rads, no Chemo. Post radiation dental problems, no saliva but grateful that salagen works well for me.   I’m a bit shy so I don’t comment too much but I do follow forums often.  Have found great comfort and tons of information on this sight.  There are so many inspirational and wonderful people here, God Bless all of you…..

TracyLynn72's picture
TracyLynn72
Posts: 642
Joined: May 2013

Tracy, 40 years old

 

MEC, 4 cm tumor removed 3/2013 which unfortunately had to mean removal of several teeth and 1/4 of my jaw.  2 surgeries and 30 rad treatments.  Halfway done with radiation right now, no chemo.

 

Thankful to God for bringing me through this journey and never leaving me!

phrannie51's picture
phrannie51
Posts: 3618
Joined: Mar 2012

phrannie from Kalispell, Mt.  Dx'd March 2012 with Stage III NPC, bilateral lymph nodes involved.  35 rads, 3 Cisplatin treatments, then 3 Cisplatin/5FU treatments after rads were done.

p

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

Wolfen from Scottsdale, Az., spouse & caregiver to Ron, who was diagnosed October 2012 with Stage IV Squamous Cell H&N, BOT, Nasopharyngeal  w/lymph nodes & secondary primary of Adenocarcinoma Left Lung. Unfortunately, Ron lost his valient battle on May 5, 2013 after completing 10 lung rads & only 2 chemo infusions.

I am also the mother of Johnnybegood from the Colon Board an almost five year Stage IV fighter and survivor diagnosed in September 2008 with Colorectal Cancer w/ liver and lung mets. Four surgeries, 28 rads, & too many chemo sessions to count. She will be on chemo for life.

Wolfen 

Tia Y's picture
Tia Y
Posts: 4
Joined: Jul 2012

i joined CSN july2012 after newly diagnosed with ENB. I had surgery 9-25-12 at UAMS Little Rock AR & they removed 2 very large tumors. Drs also cut out my nose so i have a 4inch deep hole in my face. I did 3months of radiation and chemo which ended in Jan2013. I was ready to get my PET & be declared cancer free! Then i could begin the face reconstruction & get rid of this awful (but valuable) prosthetic piece they made to keep all my bones&tissues from collapsing into the hole while i went thru treatments.

Yeah... well no--not happening. In March2013 i had 2 new tumors pop out on my scalp. Biopsy confirmed my ENB had moved from left to right side of my head. Those tumors grew FAST FAST..in 4 weeks had gotten to nickel size diameter.  I had surgery 4-29-13 & am recovering. Unfortunately....i just found ANOTHER NEW TUMOR on top of my head and will get a biopsy tomorrow.  Already set up to begin another  radiation and chemo set on Monday & will see what the biopsy will alter or add to those plans.  

I must say...i feel very overwhelmed. I am angry, hurt and in awe at what cancer can do.  I lost my smell forever, my taste sucks...even today (& i am a foodie!) and i just found out that now when i get the radiation....i will have permanent bald spots on my scalp. Its not enuf that i lost my nose-- but the opening still drains-alot, my left eye drips tears constantly, now my right eye and ear droops from the newest surgery, and now the permanent hairloss in at least 2 places.   I am a woman and i am attached to my hair--alot! It was 4feet long b4 i got cancer.  Yes i donated it.  i donated 27inches less than 12months b4 my cancer dx and b4 i started trx, i donated another 3feet. I am ashamed that i am feeling so vain on top of all the other feelings.

My biggest worry right now--more than the baldspots....just where else can this ENB go?  where else should i be checking?  

also...how to i enroll to your member list.  This is the first time i have posted even tho i joined csn last year.

It helps so much to read others who are experiencing similar problems.  Blessings and prayers to all.

If anyone wants to see photos of my journey.....i keep postings on my Facebook page.    <facebook.com/tiayatsko> 

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

I know it's been a LONG WHILE since I visited this page and I apologize. As a reminder I joined this page on behalf of my partner, Mike.

Good news is he is 3 years post treatment (diagnosed w/Stage 4 tonsil cancer Feb/March 2010). I am pleased to report that he is doing well. He developed "hoarseness" about a year post treatment and it has stuck around. It can be frustrating at times for him but thankful he is still around. He now sees ENT and ONC every 6 months. Unfortunately the radiation has taken a toll on his teeth and we are dealing with that now but again, remains NED.

Good bless to all,

Chris

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Like CLRRN, Chris, it has been quite a while since I have been on the boards.  To all of you who remember me, you know the recent Michael Douglas story got me back here checking on the chatter!!  So much admire his bravery for putting out the truth like he has!!  Thank you Michael!

As for Mark...he is doing great!!  For those of you who don't know us, Mark was diagnosed on April 13th 2010 with stage IV squamous cell carcinoma HPV+.  He finished treatment on Juyl 20th 2010.

He lives a mostly normal life...eats what he wants, drinks what he wants, works, plays...  Lasting effects: strong muscle spasms in his neck as a result of losing muscle in the radical neck dissection, and increasing intolerance to the cold. We live in PA.  His weight is back to normal, and he sometimes pats his belly wondering if he needs to take off a couple of pounds.  He asks me if he is symmetrical...and I have to honestly answer him that he is not.  His scars and bit of missing neck are constant reminders of the tremendous strength he exhibited in that battle just 3 years ago.

Our journey thorugh cancer, its treatment, and its ever haunting presence has had a powerful effect on our lives.  We don't for a minute forget that time, and I can honestly say we have been strengthened in many ways.

I am happy to see some familiar names still posting here and am sad to see the passing of Glenna.  I think of DelNative everytime I visit Bethany or Rehoboth Beach in Delaware.  Both were leaders on this forum and helped me care for Mark.  I am forever indebted to them.  God Bless!!

BEST BEST WISHES to you ALL!!!

Kimba

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Enrolling for my dad, Steve  From Lancaster, Ohio.  He is 65, recently diagnosed with cancer of the sinus w/one affected lymph node. He started his first out of 3 chemo trtmnts on 6/3/13. Begins 35 radiation trtmnts on 6/5/13. 

Noellesmom
Posts: 1275
Joined: Aug 2010

Dx inoperable late stage hypopharyngeal and BOT cancer with lymph node involvement May 2010, treatment 3 rounds of Cisplatin, 37 daily rads.

As of May 2013, Jim continues to be NED.

Serious pain issues from the radiation and continues to be unable to work.  On multiple pain medications 24/7.  Has developed and is treating COPD as well as advanced osteoporosis with multiple spontaneous fractures.

Alive and enjoying his life, thankful for NO CANCER!  Eats anything he wants and frequently pats his tummy to indicate maybe he needs to lose a few pounds - I think not!

PTL!

backachedp
Posts: 124
Joined: Oct 2009

Wife of Bob dx 9=29-09 Robbinsdale MN treated ay University of MN Masonic Cancer Center.  Still goes in several times a month sometimes twice a week....just had Surgery May 20 and his swallowing has gotten worse... :(  Seems Bob is always having bumps in the road...threw his back out a week ago can't hardly walk choughing has gotten worse also from the Surgery...he says he can't get the stuff up anymore that is phlem...and he choughs so deep and hard it truly scares me.  I also worry about him having a Heart Attack from the Choughing so deep and hard but he was put on Blood Pressure Pills and it HAS helped!  That is a good thing, but he said after he hurt his back he does not know how i live with what has happened to my back when I was 38....I said Medication and a good Pain Dr I have seen for at least 11 or 12 years...he saved my life.  Bob said the back pain is worsse than the "C" but I don't believe it as I saw what he went thru....he is just sick and tired of being sick and tired...and I understand it....someday he will be better aanother swlllow test upcomming....guess this was not the place to post my long thread but I write when I can connect,,,

Bless all of you!

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