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MIA - Folks who have not checked back in (ROLL CALL)

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

The following were enrolled and have not reported back. There are 46 who did not return in 2013 and there are a total of 125 on this list.

Adamson 091654, state unk, enrolled January 24, 2011. DX’d HPV-16 neck cancer in January 2011. Tumor removed 01/03/2011.

Agatha, Toronto, Canada, enrolled January 4, 2011. DX stage IV left side of tongue in 2010.

Aeromech, Cincinnati, OH, enrolled July 21, 2011. DX stage 1 SCC right tonsil on September 24, 2011,

Army_Guy, Maryland, enrolled January 16, 2011. DX’d SCC right base of tongue-April 30, 2010, left salivary gland-May 2010.

Arjenkins, state unk, enrolled dad diagnosed stage IV cancer base of tongue w/lymph node on both sides. Enrolled January 20, 2011.

Ballonk, Lousiana, DX SCC left tongue in 2001, enrolled on 02-04-2010. Checked in August 4, 2011.

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.

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

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

Caspercamp, McKinney, Texas, Diagnosed SCC right tonsil, stage IV on May 26, 2010. Enrolled January 3, 2011.

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.

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

Craig_Griffin, Indiana, 2008, Mass Squamus Carninoma (tongue base), checked in Feb 4, 2009

Cwctcher, Virginia. Tonsillar in 1997, enrolled November 6, 2008

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.

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.

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.

Denistd, Tennessee, 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.

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

Devildawg, Michigan, 2004, Nasopharyngeal. Enrolled August 29, 2008

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

Doitforj, Georgia, Checked in 02-01-2010, DX SCC base of tongue and neck in 2009, enrolled on February 1, 2010.

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.

Douglas08, state unknown, diagnosed stage 4 SCC sinus, enrolled August 21, 2010

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.

Fbcuthguy, Tennessee, 2009, diagnosed SCC unknown primary Stage IV in 2009. Enrolled on March 16, 2010.

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.

Fishinggirl, State Unk, 2009, Checked in 11-27-09. Last radiation Oct 09, diagnosed w/ squamous cell carcinoma (Cindy)

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.

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

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.

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

Hal61, California, diagnosed stage 3 SCC base of tongue in November 2009, enrolled 03-29-2010, checked in August 6, 2011.

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.

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.

Jan Trinks, Atlanta, Georgia, posted as being in forum on August 12, 2011.

Janymac, UK, DX in 2002, enrolled on April 18, 2011.

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.

Jodyman, Texas, 2008, Current, squamous cell carcinoma at base of tongue. Lung Cancer in 2005. Enrolled August 30, 2008

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. .

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.

Kokom, state unknown, enrolled August 12, 2011, spouse treated for NPC in year 2006.

KristynRuth, Texas, Enrolled January 6, 2012, DS SCC of a lymphnode, unknown primary, completed treatment October 25, 2010. Considered "cured".

Ktjt, state unk, diagnosed SCC NPC in May 2010, SCC on check, Mohs Sx, BCC Jan 2011 Mohs Sx, enrolled January 24, 2011.

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.

Landranger25, state unk 2009, enrolled on 01-31-2010. Checked in January 24, 2011

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

Lena Rose, New Jersey, Husband DX w/ BOT SCC HPV+ in March 2010, Enrolled July 14, 2010. Checked back in January 16, 2011.

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

MarkN_Ct, Connecticut, DX SCC recurrent Tongue. Enrolled January 3, 2011.

Marymoo, Alabama, 2008, SCC of tongue and lymphnodes current at time of posting, enrolled August 28, 2008

Marywiz15, Colorado, 2007, epithelial myo-epithelial carcinoma

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.

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.

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

Naturenaw, North Carolina, diagnosed SCC in tonsil in 2005. Enrolled on April 14, 2010.

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. Only posted “oops” on January 9, 2012

Oldejack, State and cancer unk. Reported 05-26-2009 only saying “I’m alive”

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.

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.

Paula002, Montreal, 2007, Nasopharyngeal , enrolled November 7, 2008. Reported by Soccerfreaks on November 30, 2011 that he was still around.

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

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.

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

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

Pumakitty, Virginia, father diagnosed cancer base of tongue in March 2010, enrolled July 22, 2010.

Rarph123 responded to an entry on January 17, 2011 but did not enroll.

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

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

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.

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

Sassyque-Betsy, Pennsylvania, 2003, Cancer of the tongue, Checked in 01-22, Steeler fan, Checked in 07-29-2009 good and steeler fan

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.

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.

SIRENAF42, Texas, 2008, Checked in 02-06-2009, Esthesionueroblastoma of the Ethmoid Sinusand Naspharnyx,,

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

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.

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..

Swartpb, state unk, DX SCC right side tongue on July 21, 2010. Enrolled March 6, 2011.

Tanager75, Washington, diagnosed SCC left tonsil in July 2009, enrolled July 26, 2010. Checked in August 4, 2011.

TereB, Houston, Texas, Milignant Paraganglioma (started as glomus jugulare tumor) in 1987, enrolled August 6, 2008.

Terryscarlet, state unknown, DX SCC left tonsil in July 2010, enrolled January 1, 2011.

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.

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.

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.

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.

Tonyanddenise, Central Ohio, DX primary in left tonsil, enrolled July 12, 2010. Checked back in on January 2, 2011.

Trainnut, Tulsa, Oklahoma, hypo pharyngeal cancer in 2007, enrolled August 5, 2008

Up2myneck, state unknown, DX July 2008, recur March 2010, enrolled July 23, 2010.

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

Vermont Liz, Vermont, husband DX with SCC, stage IV base of tongue in December 2009, enrolled January 5, 2011.

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.

Hondo's picture
Hondo
Posts: 6139
Joined: Apr 2009

G’day Johnny

 

With sadness I must report the following:

 

 

Frank10G Passed away last year, he was a good man who did all he could to fight this C but in the end he lost the battle.

 

 

 

Pumakitty, Lost both her Father & Mother last year to Cancer, please keep her in prayers

 

 

 

Greend: Denny also lost his battle last year; he was a good friend and someone who is missed. He helped many on this site and I am just one of them who life has been enriched by knowing him. His wife has help me by giving all kinds of recipes to my wife about things she can make for those of us who live on the PEG tube for life.

 

 

The Good News: 

 

Scambuster: Still doing well, still working full time in Singapore, he has two beautiful children and a lovely wife who are all doing well.

 

God Bless you all

Tim Hondo

 

 

Skiffin16's picture
Skiffin16
Posts: 8188
Joined: Sep 2009

Aloha...

I know of a few that have either posted or are on FaceBook and communicate now and then. Here are a few;

J3rey - I personally know Marc and he is doing well, giving fishing seminars and promoting his company and fishing line of lures, DOA.

Jan Trinks - Jan posts here occasionally, last just a few weeks ago...

Connieprice1 - I beleive that her hubby Homer just posted not long ago offering support to fellow survivors.

GreenD - Denny passed away January 5, 2013..

Katenorwood - Katie posts here frequently...

Osmotar - Linda is another that has posted over the year...

RayTodd - Just checked in CSN a week or two ago... Ray is having a few more battles that he is dealing with, or preparing for.

Staceya - Stacey I see frequently on FaceBook, and she is doing very well.

I'm sure there are a few on the lists that I issed and maybe others can give you a heads up....

Thanks Johnny..., awesome job you continue to do on this...

Mahalo,

John

osmotar's picture
osmotar
Posts: 964
Joined: Jul 2011

Hey you Skiffin  ...I'd like to add you to my FB....msg me the info if you don't mind, heck even if you do...LOL

 

As John so nicely put I post now and then, I read more that I post. Celebrated my 2yr C-free/out of treatment  on Dec 31, 2013....living life , saliva doing great, beef still leaves a funny taste in my mouth..but what the heck .

 

Take care all.

 

Linda

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

Hi, I seen my name on the roll call and I am still happy, healthy and cancer free. No real issues. Savoury taste completely returned. Saliva basically good. Hearing a bit dodgy. Still working full time, building a new house and travelling as much as possible. C forced me to enjoy life. Weird I know. I'm no longer stagnant. All my love and best wishes to everyone xxxx

meaganb's picture
meaganb
Posts: 239
Joined: May 2012

Still here. Clean MRI last week.

hwt's picture
hwt
Posts: 2153
Joined: Jun 2012

Still fighting the fight...original cancer 01/2012 in mandible. Surgery, rads and Cisplatin completed 05/2012. Tumor around carotid found 08/2013. Treated successfully at Mayo Clinic with SBRT 09/2013. Dec. 2013 a new tumor on opposite side. Currently undergoing more chemo then back to Mayo for another SBRT tx. 

Candi in STL

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

fisrpotpe, SCC wrapped around Carodit 1996, congronecrosis 2008, SCC on tongue 2009, necrosis of mandibel 2013. Champaign, IL  name john. enrolled i believe 2008. pretty much review post daily, just don't post often as many have already posted my thoughts and knowledge

jim and i's picture
jim and i
Posts: 1759
Joined: May 2011

Here are the two I know about: Ed in Port Orange passed away not sure of date but in 2012 I think. His wife posted the sad news.

Jan Trinks continues to post occassionally. She PMs me occassionally and checked in last month.

Thanks so much for keeping up with this.

Debbie

KTeacher
Posts: 1058
Joined: Jan 2011

Joined in January 2011 after my first battle, August 2010.  Started out with a bump on upper lip, no signs of cancer until path report came back scc perineural involvement, spindle cell varient.  Had mets to neck, neck dissection followed by more radiation then orbital exenteration Nov. 2012, mets on orbital nerve, followed by chemo this time and more radiation.  Cyberknife in Sept for mets to nerves in cheek and tumor on skull.  You would think that I had been cooked enough--just had Moh's surgery yesterday for skin cancer on face.  This time plain old scc!  I'm still here!

Grandmax4's picture
Grandmax4
Posts: 615
Joined: Dec 2011

I'm 2 years 2 months out from di vinci robotic surgery , removed epiglottis..radical dissection..last scope 2 weeks ago, all clear.

Thank you for the time you put into keeping track of us SURVIVORS!!

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

Tim & John, thank you for the updates.  I will correct the roster in a few days.

For the rest, thank you for posting. 

Aloha,

Johnny

 

tommyodavey's picture
tommyodavey
Posts: 398
Joined: Nov 2011

Johnny, I am here and have been posting lately when possible.  Sometime's I just want to forget that I had cancer.  It's too much to digest so I have avoided this site for several months.  That is wrong thinking so I will try my best to check in more often.

 

FYI, 2½ years clean now.  Still having side effects from both the rads and my radical neck dissection.  He took out a lot of my right neck!  It looks like my head is on lopsided.  No complaints, just the same as everyone else dealing with the after effects.  Next Monday my oral surgeon is going to remove a back upper molar that cracked a few days ago.  If it breaks before then I'm doomed!  Back to a diet of soft food.

 

Consider me checked in.

 

Tom

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

I thought I took care if this, damn chemo brain.

Still fighting the good fight. Ended up with METS to the Lung and Mediastinal Nodes. Currently on Taxotere and very little to no disease showing up on CT. I retired one year ago last week, and moved from St.Louis to Austin so my wife could advance her career. We are building our "dream home" and move in date is early May. To all of the newbies and veterans, I have been battling pretty constant since July of 2010, so there is still light at the end of the tunnel.

STAY STRONG

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

Lived in San Diego.  She died last year following a long battle.  I received an email from her husband a few months back to memorialize her passing.  Cathy was a fighter, not well known to most people here, as she didn't post often, preferring time in her flower garden. 

jtl's picture
jtl
Posts: 424
Joined: Sep 2011

I don't post much but I do check the site.  I was 2 years post treatment November 4th of last year.  My check-ups have been NED and I will have another PET in March.  I have no long term issues so I feel very blessed.  

denistd's picture
denistd
Posts: 532
Joined: Apr 2009

Hi, still around July of this year will be 5 years post treatment. still on the merrygoround though with bouts of lung and prostate cancer, this all gets checked over the next 9 weeks. denis. Concerned about tobegolden (Rick) fear he is too ill to post or worse.

debbiejeanne's picture
debbiejeanne
Posts: 2895
Joined: Jan 2010

denistd, i've been thinking/wondering about rick also.  if u hear anything please be sure to post.  thank you.

dj

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Hi, thank you for updating this list.  I haven't posted here very often but I'm still around.  I had my 1st bout with SCC to the left side of my tongue in February, 2001.  About 1/4 of the left side of my tongue was removed with no additional treatment.  The cancer returned in 2003; one week after I signed my early retirement papers from the federal government.  I had a very bad nose bleed and a small lump appeared in the left side of my neck in July, 2003.  Test results indicated the SCC had metastized in the lymph nodies in my neck so I had a radical left neck dissection and my tonsils removed in August, 2003.  I retired in September 2003 and had two months of IMRT radiation from Oct - December 16, 2003.  

I do keep up with all my checkups and so far - so good.  It's been 10 years since radiation treatments ended.  I still have some saliva production and my taste is pretty normal.  I've had some difficulties swallowing over the years and have had several throat dilations; the most recent in December 2013.  The recovery time from that dilation was a few weeks because I waited too long in between dilations.  I won't make that mistake again.  I struggled with depression after my second bout with cancer but have had good results with medication and therapy.  

I am so grateful to still be here and to have the love and support of my family and friends - and a great medical team.  Warmest regards and hugs to all who are struggling with this disease and those that support them in the good and bad times.  Kathy

paula002's picture
paula002
Posts: 35
Joined: Apr 2007

Hey Hawvet...  I'm still around and doing okLaughing.

Having some problems related to the radiation but every thing else is pretty fine!  That's the way it goes...

Paula002, Montreal, 2007, Nasopharyngeal , enrolled November 7, 2008

Pxxx

donfoo's picture
donfoo
Posts: 1410
Joined: Dec 2012

Hi Paula, 

Great to hear you are doing fine. One fault with self reporting is you need to be able to self post. I'm sorry you missed reading about Hawvet passing in April. It was posted here - notice

 

paula002's picture
paula002
Posts: 35
Joined: Apr 2007

So sorry to hear about Hawvet passing!!  He was such a wonderful person!! Cry

Thank you Donfoo and take good care,

Paula

ljoy's picture
ljoy
Posts: 91
Joined: Dec 2007

Still here and cancer free after nine years.

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

Keepin on keepin on. 5 years last month.

 

Mike

Fire34
Posts: 353
Joined: Feb 2010

Still here also. 5 years this month post ocassionally

Puggle's picture
Puggle
Posts: 88
Joined: Aug 2011

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

 

My husband passed away in June of this year, at age 53, from complications due to lung cancer.  His lung cancer was a second primary and not mets from the throat.  The lung cancer was found February 2012 and he had the lower and middle right lobe removed and followed up with 6 weeks of rads (no chemo at this time).  Cancer came back in the lung December 2012, had 5 rounds of carbo, avastin and alimpta.  The chemo caused radiation recall in his throat (it was like he was getting his throat radiated all over again, all red, couldn't eat, etc).  The radiation recall along with tissue necrosis in his throat caused an abcess to break through the front of his throat and then we found that he was septic with MRSA and had aspiration pneumonia.  The MRSA most likely from the abcess and the pneumonia from the throat issues.   After a very scary bleediing episode, his ENT performed an emergency trach and scheduled him for a complete laryngectomy in December of 2013.  This actually required 3 surgeries, over a month stay in the hospital, with muscle flap reconstruction due to the necrosis.  The good thing was that this allowed him to finally eat again once he was healed.  A CT prior to the surgery in December showed that the lung cancer was stable but, unfortunately, it came back with a vengence in February of this year. 

debbiejeanne's picture
debbiejeanne
Posts: 2895
Joined: Jan 2010

puggle, i'm so sorry for your loss.  he fought so hard, what a shame the cancer wouldn't give up.  i am also a lary so i know how hard that surgery is and how hard that life is.  saying a prayer for God to ease the pain in your heart.  Know that your hubby is no longer in pain and has no more problems with anything.  i hope you find comfort in your memories of him.

God bless you,

dj

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