ROLLCALL 2015 - UPDATED NOV. 1, 2015
ROLL CALL 2015
Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014). Thank You.
First off, please feel free to Enroll (name, town, state, dx) or Check-In whenever you see the ROLL CALL thread. I will update periodically throughout the year. Also, if you see edits which deserve attention please let me know and if I missed you, I am sorry.
With ROLL CALL 2015 we had 183 members who enrolled or check back in; of that number 80 were MIA. I see some of the MIA online occasionally and hope they will check-in for future ROLL CALL updates. As always the ROLL CALL thread is completely voluntary and just for the enjoyment and information it provides.
This time around posts which are all black are the MIA, post which have read names are 2014 update, post which are all red are updates for 2015.
MEMBERS
Adventurebob, Marin County, California, joined forum June 2010, enrolled August 21, 2010. DX’d NPC, stage IV with mets to lots of bone. in May 2010. Checked in January 20, 2011. MIA in 2012, checked back in March 2013. Lots of chemo/radiation in 2010, more in August 2011 for bone mets in right hip, more chemo/radiation Sep 2012-Jan2013. Married in bottom of Grand Canyon October 9, 2012 and now doing well.
AJW1966, outside Annapolis, Maryland, joined forum November 2012, enrolled March 7, 2013, DX’d August 12, 2012 w/SCC left side HNC. Treatment completed November 30 and still have difficulties with after effects, but slowly improving.
Akotke, Alabama, joined forum March 2011, enrolled August 12, 2011. DX’d Stage IV, right tonsil in November 2010. Was MIA until checked back in February 12, 2013. Still NED, working full time and attending school for Nuclear Medicine. Still w/constant pain from radical neck dissection, dry mouth and some trouble swallowing.
AndrewP16nose (Andrew) New Zealand. Enrolled July 19, 2015, Diagnosed Sept 2014. Invasive SCC nasal septum extending into maxilla. Incomplete excision Oct 2014. Radio and chemo for 35 days. PET scan April 2015- NED. Facial reconstruction surgery with fibula free flap June 2015. Recovering prior to tidy up surgeries.
Arndog64, state unk, joined forum March 2011, enrolled husband in April 18, 2011. DX’d left tongue base tumor w/lymph node invasion on January 28, 2011. After MIA, reported back on February 5, 2013. Husband doing well but still has throat pain and teeth starting to deteriorate.
Avisemi (Majose) caregiver. Washington, DC. Enrolled July 15, 2015. My husband Dmitri was diagnosed with nasopharyngeal squamous cell carcinoma stage 3 or 4 depending on doc on Sept 2014. Finished treatment in Feb this year. First post treatment scans were NED. Next ones are next month. Pone of the favorite tips I learned here: "if Jeff can do it, Dmitri can do it"
Backachedp, Minnesota, joined forum October 2009, enrolled July 24-2010. Husband Bob DX’d unk on September 29, 2009. NED May 23, 2010. MIA in 2012 and checked back in March 13, 2013. Was doing OK but with swallowing problems. Having lung issues due to aspiration.. Dr recommending feeding tube.
Chked back June 22, 2013. Surgery on May 20 and swallowing/coughing gotten worse. Also have back problems. God bless and saying a prayer for him.
Barbaraek (Barbara, caregiver to husband Boris, age 55). Joined Sep 4, 2015. Diagnosed 5/26/15, NPC stage IVa T4N1M0, 35 radiation tx with 2 concurrent Cisplatin, currently attempting adjuvant chemo Cisplatin + 5FU. Finished treatment September 2015 - was only able to tolerate one round of adjuvant chemotherapy. Great news was NED on October 2015 PET scan. Will now receive regular scans.
BartT, Staten Island, NY, joined 03-2013, enrolled 12-31-2013, DX’d 03-2012 w/tongue cancer. Hemiglossectomy, radiation & chemo. All clear at time of enrollment and back to 100% on activities and life style, but with minor but annoying side effects.
Bebo12249 Enrolled Oct 29, 2015 SCC HPV+ of the tonsil with positive lymph nodes July 2015. Tonsillectomy followed by seven weeks rads and Cisplatin. Completed treatment on 10-22-15. Thanks to everyone for their comments, support and knowledge.
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. Updated 01-01-2013
Bjohn, Chicago, Illinois, joined forum October 2011, 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. Updated 01/22/2013
Boardwalkgirl, Indiana, joined forum June 2012, enrolled February 10, 2013, DX’d April 26, 2012 with SCC in lymph node on side of neck. Treatment completed and clear PET scan on October 27, 2012, Still struggling with lack of saliva and taste buds.
Bunnymom, Chicago, IL checking in May 22, 20114 Tongue cancer. Starting chemo & rads June 8th. 12 week treatment plan. Thanks to everyone for their support!
CajunEagle, (Larry), Louisiana, 2009, joined forum October 2009, enrolled February 3, 2010, DX’d Stage 4, left tonsilar cancer in 2009. Enrolled on February 3, 2010. Reported back in March 7, 2013 and still doing well. Checked in January 6, 2013. Checking in Jan 14, 2014 and doing quite well. Thanks to all. Checking in Aug 17, 2015 After 6 years post treatment………I’m still around. Thank you.
Carolinagal4, Apex, North Carolina. Enrolled July 26, 2015 diagnosed stage 4 SCC of the tongue (side of tongue) with lymph node involvement in April 2015. Finishing up 35 radiation treatments with concurrent chemo (Cisplatin) now--one more week to go! The cancer has shrunk considerably so far and I am hopeful that it will continue to shrink (if so, I may avoid surgery). This site has so much great info and people on it--I feel lucky to have found it! thanks so much to everyone who takes the time to reply--You make a difference!
Catfish_58, Waco, TX, joined forum February 2013, enrolled July 30, 2013. DX’d SCC left tonsil, HPV+ Stage III. 33rads and 7 weekly chemo's of Cisplatin,Started treatment in 2-25-2013. Treatment completed April 20, 2013 and scheduled for PET on July 31st. Am 9 months post now, Saliva very little ,taste almost back to normal. Check in Jan 13, 2014
Catluver96 (Viki) Jan 15, 2014, Diagnosed July 2012. Tongue cancer stage 3. Radical neck dissection. 1/3 of tongue removed. Skin graft from thigh for side of tongue. Chemo (Cisplatin) and 33 rads started October 1, 2012 finished November 15, 2012. Doing well. Eating good, have most of taste back. Read forum often. Best wishes to all.
CathyHorner, Johnson City, TN, joined 11-2013, enrolled 12-29-2013. DX’d Stage III, Laryngeal cancer in June 2013. Clear pet scan in 11-2013. Need trache for breathing and difficulty speaking.
CherieLW, Lancaster, Ohio, joined forum May 2010, enrolled dad (Steve) on June 4, 2013. DX’d cancer of sinus w/one affected lymph node. Undergoing treatment at time of enrollment.
Christmas, California, joined forum May 2005, enrolled July 8, 2008. DX’d NPC Nasopharyngeal in 2004. had been absent but back in. Last check in July 14, 2013 and life has beeen good. Dealing w/problems and completed 10 years from DX. Checking in May 21, 2014 Sorry I missed the roll call. I have been very busy with work. Lots of demands and deadlines requiring 12 hour days. Can't complain except that I don't have much time for anything else. Good news to share - I have a new grandson who is now four month old. Unfortunately, he lives a six hour drive away. It's been nearly eleven years since my diagnosis. I feel very fortunate. Very minor complaint - dry mouth an issue because people have difficulty understanding my speech. Still no other meds aside from a low dosage of synthroid. Lots of infections - eye, bladder. Lots of dental problems. Other than that life is GOOD! Just getting older.
Chucka21, Vine Grive, Kentucky, joined forum April 2013, enrolled May 21, 2013. DX’d February 21, 2013 w/SCC unknown primary. Modified neck dissection March 5, 2013. Tonsillectomy April 14, 2013. Undergoing radiation at time of enrollment.
cid817, Fredericksburg, Virginia Enrolled July 24, 2015 Husband was diagnosed August 2013 – SCC of epiglottis with 2 lymph nodes, Stage 4b - HPV negative. Completed treatment end of November 2013 – 35 rads, weekly cisplatin (6 total), no surgery. Did our research and 3 consults before treatment. Walter Reed suggested surgery to remove epiglottis along with the tumor and put in a temporary trach tube, then chemo and rads. Was told that the rads would destroy epiglottis and that is why they would remove it. Local ENT suggested chemo and rads, no surgery. Local radiologist was furious that we were told rads would destroy epiglottis; said they were trying to save it, not destroy it. Went with local ENT, radiologist and oncologist. Were shocked with the differing opinions of treatment! Here we are, almost 2 years later, NED. Second PET scan will be in November. Issues with dry mouth and taste, some swallowing/slight choking issues, occasional flair ups of the radiation site. Every day is a gift.
CivilMatt (Matt) Albany, Oregon, enrolled October 22, 2012. DX December 23, 2011 w/Stage Iva, SCC, BOT, HPV+ & l lymph node on left side of neck (surgery, radiation & Erbitux). 660 days post, lost 43 lbs, gained 20 lbs, saliva, dry mouth and taste challenged. I am on the standard H&N plan seeking maximum recovery. I see life differently now, wonder and tragedy are but a heartbeat away. My H&N friends help keep me grounded. You are all special in your own way. Time is precious. Checked in January 19, 2013. Check in January 12, 2014, Check in July 13, 2015.
CLRRN, Maryland, joined forum June 2010, enrolled July 13, 2010. Reporting for partner Mike. DX’d SCC left tonsillar basloid. Checked in August 7, 2011. MIA and checked back in June 3, 2013. Reported good news…some ailments but NED.
Corleone, Mississauga, Ontario, Canada, joine forum July 2012, enrolled February 1, 2013. DX’d NPC Stage III on June 14, 2012. Treatment completed December 1, 2012. Check-in July 10, 2015 Toronto, ON, Canada joined forum 21-July-2012. Diagnosed with Nasopharyngeal carcinoma, stage III, on 14-Jun-2012 ,Last checkup May 2015, complete remission. Corleone: I made Cancer an offer it can’t refuse
Crazymom (Ann) Checking in Sep 8, 2015 I had left tonsil and two left lymph notes. I have been cancer free for 3.5 years. I am doing well and enjoying life.
Cureitall66 (Cris & Kreg), Michigan, joined 12-2012 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. Tx ended Nov 2012 No surgery, Chemo (Carboplatin & Paclitaxel) once wk for 7 wks, Radiation 5 days wk for 7 wks Reported back 12-30-2013 that NED after treatment. Doing well w/minor issues. Checking in July 20,2015 Latest check up 07/16/2015 – NED. Back to Golfing and riding his Harley! Enjoying Life!
Cwcad, joined forum November 2009, enrolled January 31, 2010, state unknown, checked in 01-31-2010, DX’d Stage IV BOT in February 2007. MIA list and checked back in on February 10, 2013. Neck spasms irritating, but not bothersome. Had heart bypass surgery. Doing well.
6Cyn (Caregiver for Husband) Enrolled Aug 7, 2015 He was diagnosed in August 2013 with stage IV Head and Neck cancer, left tonsil and three lymph nodes on same side. 35 rad treatments and 3 cisplatins did the trick. This site is a wonderful support and full of information. Thanks to all His words, "Hold on tight and do the fight!"
D Lewis (Deb), Sierra foothills, California, joined forum January 2010, enrolled February 5, 2010. DX SCC base on tongue, January, 2010, checked in July 23, 2010. . PET-CT NED in October 2011. No snot, no spit, no tears, but otherwise living life to the fullest and having a great time. Updated 02-01-2013. Check in Jan 17, 2014 Still hanging in there. It will be four years from end of treatment in May of 2014. No snot, spit, tears; impaired taste; still got teeth; starting to have some minor issues with radiation-induced cataracts, and radiation-induced fibrosis in neck muscles and lungs. Still living life to the fullest and trying not to sweat the small stuff. Damned glad to be here. Damned glad you are all still here as well. Checking in Aug 16, 2015 I passed the 5-year milestone in May 2015! Side effects continue unabated for me, but it beats the alternative. Still alive, grateful to be here and loving life! Thank you all for being here.
DaveJay, Geneva, Switzerland, joined 12-2013, enrolled 12-28-2013. DX’d Nov 2013 lingual tonsil spread to left lymph node. Surgery completed; Radiation/Chemo to start in January 2014.
Dazey, New York, enrolled January 31, 2010. DX’d SCC unknown primary in summer 2009. Finished treatment end of October 2009. Checked in October 23, 2012 and all remains clear NED! Checked in February 1, 2013 and NED continues. Check in Jan 17, 2014 Very pleased to report I continue with NED. Have had some interesting late blooming side effects (starting about 9 months ago) no sense of taste or smell; there is occasional swallowing difficulties and have had some dental issues but overall, doing very well and very happy to be able to check in here each year. No matter what,it is a blessing to be still here. Peace to all. Checking in Aug 17, 2015 Dx 6 years ago, tx finished the end of 10/09. NED continues (hooray), side effects continue(yuck), but doing, really, really, really well! Many thanks for continuing this thread.
Debbiejeanne (DJ), Cincinnati, Ohio, joined forum January 2010, enrolled July 11, 2010. DX’d larynx cancer in August 2009. Cancer returned in February 2,2012. Last check in June 23, 2013-doing well and NED in October 2012. Follow-up on 12-31-2013 on swallowing problem and nerve damage on left arm. Checking in July 26, 2015 It is a very rough road but its a fight you can win!! Hang tough!
Dlygoblue, DFW area, Texas, joined forum March 2012, enrolled March 8, 2013. DX’d Olfactory Neuroblastoma in May 2011. Living cancer free.
Ditto1, state unknown, joined forum March 2012. Posted on February 4, 2013 that it is almost one year since DX’d. Still here. DX with Base of Tongue stage 4 in March 2012. Chemo and Rads, no feeding tube. Kansas. I agree this site got me thru the treatments, along with God and my wife Diane. Not sure what we would have done without it. Check in July 14, 2015.
Donfoo (Don), SF Bay area, California, joined forum December 2012, posted in 2013 roll call, but had not formally enrolled until 01-2014. DX’d BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes, one tooth out. Tumor board-induction TPF (3 cycles), seq CRT Apr-June 2013. Fully recovered after six months and feeling great. Checking in July 29, 2015just crossed two years post tx. Overall in better shape mentally and physicall than before. Got tight muscles in the neck and my head sweats now when eating hot stuff. Just hope the long-term side effects stay far away.
Dr.Ed, from NYC but lives in Houston, TX, joined forum January 2013, enrolled February 11, 2013. DX’d Stage IV, BOT, tonsils, throat and nodes (HPV driven). Treatment completed and tough road at this time on road to recovery.
Duggie88 (Jeff), Bernville, Pennsylvania, joined forum Februarey 2010, enrolled May 8, 2013, DX’d throat cancer November 22, 2009. At the Hospital at the University of Pennsylvania I had a full neck dissection a week before Christmas removing part of my tongue, epiglottis, lymph nodes, and uvula. Radiation February 16, 2010 through March 30, 2010. January 2015 I was told I was cured but my wife reminded me and the Doc only of cancer. Enjoying the day and look forward to tomorrow. I have often said it was the hardest thing I ever had to endure in my life but if I can do it anybody can do it. I now live happily ever after spending the kid’s inheritance. Life is good .Check in Jan 13, 20114, July 14, 2015
Dunedintech (CPC), state unk, joined forum 04-2013, enrolled 12-16-2013. DX’d 01-07-2013 SCC front left of tongue. 27 lymph nodes removed. Lost 23 kgs (50.6 lbs) during treatment. NED on 04-09-2013. Ticking along ok as at 15 July 15. Check in July 14, 20115
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! Check in Jan 16, 2014 I am still doing great! I had a couple of scary moments and had to undergo extra tests, but everything appears to be fine! no sign of regrowth and I am working with my new normal. Check in Jan 9, 2015 I am still doing great! I have had some issues with narrowing of my esophagus, but I am doing well...busy enjoying being a mom and wife!
Elaineh Austin, Texas, Enrolled July 21, 2015, diagnosed with stage III SCCA right piriform sinus in March 2014
underwent two courses induction chemo with 5FU, cisplatnim and taxentered then seven weeks of carboplatnim and radiation. NED since YEA !!! bad side effects of treatment include 45 pound weight loss, laryngitis, recurrent aspiration pneumonia and replacement of feeding tube. I've had nothing but ice chips by mouth for one month.
Inability to talk and eat or drink have led to social isolation and depression. Really enjoy this site. It gives me great hope to see how all others have dealt with adversity!!
Estelle_H, Enrolled Aug 13, 2015. Still alive
Eversteve checking in June 27 2015 Excellent idea. Do you mind if I join the club ?
Fisrpotpe (John Van Grinsven), Champaign, Illinois, joined forum August 2010, enrolled December 29, 2010. 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 th
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Swopoe- caregiver to husband, age 40, Houston, TX, Joined October 2015. Treated at UT- MD Anderson and Memorial Hermann Hospitals. Diagnosed with SCC, primary tumor, oral tongue. Lymph node involvement, area II b right side of neck. Surgery - tongue and partial neck dissection November 2015 to be followed by radiation.
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checking in
Diagnosed in July 2015 Stage IV Supraglottal SSC, finished 7 chemo and 35 radiation on 29 sept. Feeling better, still have feeding tube and not eating by mouth fully yet. Have next ENT apt Nov 13 with possible PET scan . A little bit of scratchiness in throat but all swelling in neck, redness and sores gone. Mostly have taste back but still no real appetite when I eat by mouth. I lost total of 100 pounds and think I am just so used to not eating that it doesnt take much to make me feel full. Currently weigh 168 but was told if I maintain 170-175 for one month and eating all by mouth they will remove PEG. Looking forward to that and positive news from ENT.
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Still heremokus said:checking in
Diagnosed in July 2015 Stage IV Supraglottal SSC, finished 7 chemo and 35 radiation on 29 sept. Feeling better, still have feeding tube and not eating by mouth fully yet. Have next ENT apt Nov 13 with possible PET scan . A little bit of scratchiness in throat but all swelling in neck, redness and sores gone. Mostly have taste back but still no real appetite when I eat by mouth. I lost total of 100 pounds and think I am just so used to not eating that it doesnt take much to make me feel full. Currently weigh 168 but was told if I maintain 170-175 for one month and eating all by mouth they will remove PEG. Looking forward to that and positive news from ENT.
Diagnosed March 2009 with stage 3 larynx cancer, had 35 IMRT blasts and 3 cisplatin Hi dose chemo. Told by ENT in July of 2014 he considered my larynx cancer cured, not haveing any problems with it, saliva good, did lose my teeth and thyroid croaked but all is well. Still under active surveillance for prostate cancer, have been since June 2013, cancer is stage one and has not grown at all in two years. Denis
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Checking Indenistd said:Still here
Diagnosed March 2009 with stage 3 larynx cancer, had 35 IMRT blasts and 3 cisplatin Hi dose chemo. Told by ENT in July of 2014 he considered my larynx cancer cured, not haveing any problems with it, saliva good, did lose my teeth and thyroid croaked but all is well. Still under active surveillance for prostate cancer, have been since June 2013, cancer is stage one and has not grown at all in two years. Denis
Just celebrated my 5 year anniversary! Have not posted in awhile but do check in occasionally. Diagnosed September 10, 2010. SCC BOT HPV 16+ 1 Cisplatin followed by 4 Erbitux. 35 radiation treatments.
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Checking in Nov. 14, 2015
katenorwood....(Katie) Dx'd 2011 adenoid cystic carcinoma. I live in central Minnesota. Lungs are kicking my butt, and no tx to match for a fix. But am very hopeful and looking ahead to more research being done for all of us with any kind of H/N dx. I look through the above list and am amazed at the strength of the folks listed. I am saddened to see members listed that have moved on to the next adventure. I am proud to add my name to this list of survivors and warriors. Thank you for continuing this very important task of giving us a voice !
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survivor
Connie Price Stage IV BOT with 2 lymph nodes involved HPV+ Completed Chemo & 35 Radiation treatment 4/2011. So far so good! Please add Connie to survivor list. I was sorry to read that some of my good friends had not survived. Some I communicated with directly and some I always read their posts. To: Barefoot Bob, Delnative (Jim), Jim and I (survived by Debbie), luv4lacrosse (Mike), To be Golden, Wolfen (Ron) and Charlie Trinks (survived by Jan) May you All Rest in Peace and that Heaven is Everything we dream it to be. To Everyone that has lost a loved one here, I pray for the caretakers and families.
Checking in, Homer & Connie Price 11/7/2015
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MikeMetz here and kicking
MikeMetz (Decatur, GA.). Diagnosed 1/2009, MEC base of tongue left side. Chemo + rads. 6+ years NED. Had left mandibular resection 5/2014, with a radial bone flap resection 6/2015. Recovering steadily, transitioning from PEG tube feedings to oral-only now. Hope to ditch PEG tube early in 2016 and get on to dental reconstruction stuff.
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Granmudder caregiver to Husband Tony Stage 4 A finished treatment August 2014 Still NED
from BC Canada0 -
Jimbo55
Jimbo55, from Chicago working in Bangkok Thailand, joined forum June 2010, enrolled March 18, 2013. DX SCC BOT in May 2010.
Five years plus and I keep on keepin on. A few minor after effects: taking thyroid meds, a little dry mouth, the voice is a somehwat hoarse at times, but all in all, absolutely nothing to complain about. Life is good.
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Checking In
tomb247 Enrolled July 23, 2015, Diagnosed January 2015, SCC Tonsil and Base Tounge. Stage3 N 0 HPV+.
6 Weeks IMRT 7 Fields. 1 mo CT Scan Normal. 4 months post reatment Clear with high confidence of No Evidence Disease. FIngers Crossed
UPDATE Nov 2015 - NED after 6 months. (PET Scan in Feb or Mar 2016 ar one year post treatment).
Taste is still off. Most times sense sweet, spicey and salty but not much else. Lymphedema in neck and vocal chords. Still some swallowing issues but can eat most items. Feeling pretty good and working full time although still a bit fatigued after long day or week. Saliva is slow slow slow to come back to whatever the new normal will be. Dentist every 3 months and Flouride Trays every day forever to try and save teeth which were all normal prior to treatments. Hoping that it helps.
Actually pretty happy right now. God, friends and family have been supportive and My faith has really grown in last few months.
Hope and Pray you all are well, healing and peaceful. Take care.
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