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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.

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

My location is Torrance, California
I guess I never saw where to put my location.
I wish it said our location on our profile/username
Billie

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Unfortuantley lost her battle July 2012....

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Hondo, Louisiana, DX Nasopharyngeal November 2002, Enrolled in April 2009. Having a lot of problems with Radiation Side affects almost 8 years later. Lost Voice, Lost ability to eat “PEG Tuber now”, lost hearing, Numbness on left side of face, and oh yes live in pain most of the time. All in all I am still alive and still working full time. I continue also to work in my online Ministry of Restoring Gods Truth; Satan can take away my Voice & my hearing, but God has not let him take away my keyboard.

 

God Bless

Hondo

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

especially the part about the keyboard!

michdjp's picture
michdjp
Posts: 185
Joined: Sep 2011

Michdjp:  Staten Island, New York enrolled on 9-1-11.  Dad was diagnosed on 8-8-11 with tonsil and lymph stage IV. Treatment started on 8-22-11 (1) cisplatin then (3) carbo 5fu and 33 imrt.  Treatment ended on 10-24-11 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

NJShore, New Jersey, Enrolled Jan 7, 2013, DX’d October 11, 2012 w/Stage VI... Please confirm the IV ... 

I am so embarrassed, I can type faster than most people talk, but on my iPad with spell check... Hopeless!

thanks,

Kari

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

No snot, no spit, no tears, but otherwise living life to the fullest and having a great time!

Deb

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

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.  Had 7 teeth removed without having HBO treatments. NED continues to be good friend. Check in Feb 1, 2013

 

thanks Hawvet for doing this, so special to see so many survivors

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

fishmanpa, Front Royal VA. 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).

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I think you just done did it...

JG

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

As Skiffin 16 indicated below, you are now enrolled.  I will update the listing.  HAWVET

Laralyn's picture
Laralyn
Posts: 429
Joined: Apr 2012

Laralyn, Los Angeles, California, enrolled Feb. 1 2013. Stage IV SCC in left tonsil, HPV+. 35 rads, 6 Cisplatin chemo completed June 1, 2012.

MarineE5
Posts: 743
Joined: Dec 2005

HAWVET,

Just checking in. DX 2004 Base of Tongue cancer. Doing Fine.    S/F

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

I never get the staging right and I hate to ask him, but I think I posted it last year.  

Add us in for another year.  Dx in March 2010 and finished treatment (35 rad/3 cisplatin) on June 28 '10.  BOT, HPV positive, non-smoker/drinker, one involved lymph node.  No surgery. No PEG.  Taste has been back for quite a while with a slight chocolate deficiency and no saliva problems except he does take a little more care with bread.

Regards to all.  I read the board every day and am pained by the discouraging times some are having, but always warmed by the raw courage that is so typical.

 

Nancy 

 

 

Vee1
Posts: 59
Joined: Nov 2012

Dad is 94.  First dx 2001 SCC floor of mouth. Surgical resection.  NED for 11 years.  Recurrence and surgery Jan 2012.  November 2012 tx: inoperable (due to compromised lungs and age) SCC floor of mouth.  No chemo.  Rx: 33 Rads.

Dad intends to live 15 years past whatever age he is!  He started doing this when he figured so many people died right after their 100th birthday.  So, he decided to simply add 15 years and that way he'll never reach his "goal" birthday.  If you were to ask him today, he'll tell you he plans to live to be 109.

 

I sure hope so!

 

-Vee (So. Cal)

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

Corleone, Mississauga, ON (Canada), Nasopharyngeal carcinoma, stage III (T2N2) diagnosed 14-Jun-2012, Radiation 70 Gy 35 sessions; Concurrent Cisplatin; post radiation carboplatin + fluorouracil (5-FU); treatment completed 01-Dec-2012.

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

I'm coming up on a year since my last treatment.  Still NED.  How bout that?  I have some problems since the many treatments, but they are very tolerable.  Trismus, opening about 20mm, which means I smear a lot of food on my lips.  Hard to chew and swallow, so I'm on a soft/liquid diet.  That isn't really a big problem.  Otherwise I'm in A+ shape, no complaints.

 

Pat

Dazey
Posts: 86
Joined: Sep 2009

Very happy to report I am still here and still loving every sunrise.  DX summer of 2009, radiation completed 10/09 - many subsequent cat scans etc and NED continues.  Dazey

yensid683
Posts: 222
Joined: Apr 2012

Yensid683, diagnosed 3/26/12 with stage IVa base of tongue, HPV+, with left cervical lymph nodes involved.  Treated with induction chemo (1 x), 33 rads with 7 weekly doses of Erbitux, treatments ended July 5 2012, back to work Sept 4, 2012.  Selective neck dissection October, pathology showed a few remnant cells but now NED and doing well

Albany NY!

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

my location is harmony nc. i am 3 years out next mo. right tonsil cancer

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

my location is harmony nc. i am 3 years out next mo. right tonsil cancer

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

my location is harmony nc. i am 3 years out next mo. right tonsil cancer

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

 I am new here as of January 2013 . I live in Texas . Was dx in 2011 with SCC on my scalp. Had mohs surgery in Dec 2011 with clear Margins. Then in april 2012 I found a lump on the side of my neck. Dx as SCC and had 3 lymph Nodes removed in July 2012. The Biopsy report showed no cancer ???? Anyway the docs wanted me to have Raditation tx to make sure there were no cells left so I had 33 tx.The last one was the 26th of Oct. 2012 . As you can see that is the only exact date I remember !!!! I am still dealing with a lot of the side effects that I have seen on here , but feeling good now.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Still alive and well. Neck spasms are my only little gripe, and soon to be 4-years out from the end of tx.

kcass

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Hubby still here but back to Chemo every other went, Head and Neck that went to lungs.

Jennie

 

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Northern KY - still doing VERY well, even with minor post-treatment issues

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Roxanne (Silver Foxette) is in the fight again - chemo to start again first week in Feb, 2013.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Mike (Landranger25, Michigan) checking in and doing well. 39 months post treatment now with no issues. Diagnosed May 2009 SCC BOT stage III with one lympnode, treatment completed October 2009. 10 weeks chemo and rads, no surgery.

 

Regards, Mike

LeoS2323
Posts: 143
Joined: Mar 2012

LeoS2323, Liverpool, England, enrolled on April 2, 2012. DX’d MEC stage 4 intermediate grade, unknown primary, met to single lymph node. Checking in 4th February 2013; had left sided neck dissection, tonsilectomy and BOT biopsy on April 23rd 2012. All came back clear of cancer, no treatment required so far and currently having 4 monthly MRI / ultrasound scans which have found no evidence of a primary to date. Original Stage amost certainly lower than 4 in hindsight, neck lump may have actually have been the primary. Happy and healthy, loving life.

meinken's picture
meinken
Posts: 38
Joined: Jan 2010

Been away for awhile.  I was diagnosed with Nasopharengel cancer in the beginning of 2010 and had the usual run of chemo and radiation.  I was declared NED in June of 2010.

In the beginning of 2012 a scan showed a new growth of Maxillary Sinus cancer.   Went with surgery this time.   Required a reconstruction of the eye orbit and basicly they opened up my cheek and removed everything(inluding my upper gum on the right side and all the upper teeth on the right side) and took tissue and bone from my shoulder blade to rebuild. 

Unfortunatly, they found another growth behind the right eye 3 months later during a scan.  Went through concurrent chemo and radiation or 7 weeks/35 treatments.   I may or may not lose the use of my right eye but for now it is patched and when I take off the patch I have some vision but bluriness.  Will have to see how that goes over time.

Finally, some good news, I had a Pet last Fri 2/1 and saw the doctor today.  The Pet showed No Evidence of Disease.  Hoping this is the last time, but, already have my follow up CT set for 3 months.   Keeping fingers crossed that I get past 2 years this time.

The first time through, y'all were a god-send of information and support.  Thank y'all, and If I can help anyone else or offer comfort/information, I am here again and will be checking in often.

 

 

 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You should share that on a post...totally awesome news, congrats...

John

meinken's picture
meinken
Posts: 38
Joined: Jan 2010

Whoops duplicate please delete

ditto1
Posts: 630
Joined: Mar 2012

SINCE DX, NED FOR NOW HOPEFULLY FOR MANY YEARS TO COME.

seenanN
Posts: 24
Joined: Oct 2009

SeenanN, Maryland, NPC met to lung with dozen of swollen brain nodules. Back to work fulltime 4 months after Tx ended Dec 2004 with side effects including dry mouth, dry eyes, jaw pain, loss of hearing, nerve damage, foggy brain and then shingles and sinus surgery. On the bright side walking daughter down the aisle, seeing my children complete school, living and looking at the smiling face of the lady that I admire the most, my wife.

 

Thank Hawlet,

 

Seenan        

 

arndog64's picture
arndog64
Posts: 535
Joined: Mar 2011

Arndog64 checking in... My husband is doing well still has the throat pain and his teeth are starting to detoirate. Other than that, he is a trooper..

Sooner79's picture
Sooner79
Posts: 29
Joined: Jan 2012

Diagnosed 3/22/11 and joined forum on 1/28/12. Created an "about me" page when I joined but I didn't make it on to either list. Maybe I didn't post enough although I check the forums every few days. I am NED as far as I know but have my second post treatment PET scan on 2/11/13.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Sooner, than later right...welcome to the list.... actually to make it on this list, you have to reply just as you have...

Best ~ John

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

(Actually, checking is not allowed in amateur hockey though banging around is)

Just stopped by and realized that it is two years this month since the last stage which was just a clean-up neck dissection. Already past two years for nine weeks of rads and chemo and two and a half since the opening tonsilectomy. Life is wonderful and recovery nearly complete. Have been playing about four hockey games a week and working all over the world. If it weren't for needing water to eat or talk long, no one would know what we went through. Really, only other aggravation is an increasingly stiff neck.

Yes, it can get a little depressing to have to consider whether one can eat things; it has been two and a half years since I could just get a plate and eat anything I wanted any time any where. I wish I could go back and tell myself that that would be the end of it but, on the whole, this is not a major issue. My angel wife, DrMary - who is out doing Tae Kwon Do right now - still makes practically every meal from scratch to accommodate me and still massages the neck scar nearly every day with Vit E oil to make it disappear.

But it is good to stop by here and see friends who meant so much. You "graduate" from school and move on but you never quite move on from here. Big hugs to all from us. If you are ever in the Wash, DC/Maryland area, please let us know. Doug and Mary

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Here! Please keep me in prayer.  Love & Prayers to you all! 

 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You are always in my prayers..., you are an original sista ~ JG

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I checked in to see some of the old gang that is till around.  Great to read that the oldsters are still posting.  I can see that many of the threads are connected for the new members.  Great aide and great sight.  I am doing pretty well.  Neck spasms are irritating but not bothersome.  Had heart bypass surgery a year or two ago and seems to be doing well.  I still marvel as to the bravery of the members of the head and neck survivors.  I had it easy compared to most of you.  I continue to try to maintain the claim that I would rather be ;ucky than good so I am still here so that means I am still lucky!

Hope this signs me up!!

 

 

 

 

 

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I checked in to see some of the old gang that is till around.  Great to read that the oldsters are still posting.  I can see that many of the threads are connected for the new members.  Great aide and great sight.  I am doing pretty well.  Neck spasms are irritating but not bothersome.  Had heart bypass surgery a year or two ago and seems to be doing well.  I still marvel as to the bravery of the members of the head and neck survivors.  I had it easy compared to most of you.  I continue to try to maintain the claim that I would rather be ;ucky than good so I am still here so that means I am still lucky!

Hope this signs me up!!

 

 

 

 

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

Southern Indiana, Diagnosed late July 2012. Stage IV neck, one lymph node, unknown primary. HPV. Neck dissection Cleveland Clinic, radiation and chemo Indiana University Healh Indiana. Last treatment 12/13, 2012. Still battling side effects. Starting tp plan my life again. Get depressed at times, working out of that slowly. Still tired, taste still problem as are the normal side effects. First PET scan March 3. Hoping and praying

boardwalkgirl
Posts: 261
Joined: Jun 2012

Boardwalkgirl, (Pat) Indiana, Diagnosed 4-26-12 squamous cell carcinoma in one lymph node on right side of neck, unknown primary, started radiation (35 treatments) 6-11-12. Had 3 rounds of Cisplatin. Ended treatment 8-3-12. Clear Pet Scan 10-27-12.Will have cat scan 6-25-13. Still struggling with lack of saliva and taste buds but thankful for every day I have been given.

Dr.Ed
Posts: 22
Joined: Jan 2013

hi, I've been posting for a few days , didn'tknow there was a roll call...which is a great thing.  I'm from NYC but live in Houston. I was diagnosed Stage IV--base of tongue, tonsils ,throat and nodes...HPV driven. Had cis/tax/5-fu for 3 rounds then 35 rads and modified neck to remove a positive node. Recovery real tough for a couple of months now alot more "almost normal" days. So glad for this network..thanks, Ed

akotke's picture
akotke
Posts: 37
Joined: Mar 2011

AKotke, diagnosed stage 4 right tonsil scc in 2010.  Still NED, working full time and going to school for Nuclear Medicine.  Happy to see my daugher's first two years of life and my 14 year old son's full transition from a human to a teenager.  Constant pain from the radical neck dissection, a little dry in the mouth still, and a little trouble swallowing some foods but I'm here, I'm able to eat and enjoy, and I'm up to living life!

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

Dx October 2011 Base of Tongue w/ one lymph node HPV+

No surgery, no platinum chemo. Just Erbitux and radiation

Last tx was Jan 21, 2012.  To date NED

Feeding tube for 7 months, lost 70lbs during tx

No saliva, eat anything I want (some foods I struggle with like breads, meat) and some food like chocolate and cereal just don't taste right. No OJ for me still.  I would say taste buds are 90% back.

No pain, working full time.  Only meds I take is 1 ambien (sleep pill) before bed (helps me sleep better through dry throat issue)

Hunting, cutting wood and playing in the woods every chance I get (other than spending time with my beautiful wife and five children) Sealed

Chin up all you new folks, this is very beatable and there IS life after cancer!  Fight and give it all you got!!!! (lot's of  prayer kept helped me personally)

Tim6003

McCall, Idaho

vetorama's picture
vetorama
Posts: 16
Joined: Sep 2005

Venice Florida. Diagnosed Oct 2 2012, Stage 4 mandible and floor of mouth. Surgical excision and awesome reconstruction. Week 4 of Erbitux and docetaxel today and Rad tx #11 today.

 

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Saskatoon, Saskatchewan, Canada. diagnosed November 19 2012, early stage 2 SCC of tongue. Had partial glossectomy Dec 4th 2012 (removed 1/3 of my tongue). started 30 radiation on 29th of January and also the first of 3 Cisplatin chemo. Second chemo scheduled for Feb 19th, last of everthing March 12. Also 3 lymph nodes showed signs of something, but won't find out about that until after my post treatment CT scan (must be like your PET scans). Starting week 3 today...still have some spit, food tastes lke crap for themost part but I can still eat. Pain under tongue and lower gums, but didn't have to get any teeth removed. just the promise of FOREVER flouride trays and religious brushing flossing and dental care. I am so glad to have found this site as I don't think the Canadian Cancer Society site has one. Thanks for letting me in to your club, although none of us truly wants to be a member.

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

I have not been on the forum as much, but am still committed to update Roll Call annually.  Please keep on updating your status or enroll for the first time.  Aloha, Johnny

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