CivilMatt Member Posts: 4,698 Member
edited October 2016 in Head and Neck Cancer #1


Updated September 18, 2016

All H&N members are welcome!


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 the 4th update of ROLL CALL 2016 we have had (as of September 18, 2016) 203 members who enrolled since 2008.  There has been 66 members either checking in or enrolled, so far. Which leaves a number of MIA’s, I am still hoping will check in.  Come on H&N members, make HAWVET proud.  I would like to hit 100 or more!  H&N members need to be counted.


As always the ROLL CALL thread is completely voluntary and just for the enjoyment and information it provides.  Leave your mark, share your stories, you matter.




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.  Check in July 12, 2016, scans today are NED! Monitoring will now be every 6 months. Dry mouth is still a big challenge, but eating is getting better, and energy is returning. Chemo port, PEG, and all pain meds are gone...and hair is back!  Barbara - caregiver to husband Boris, diagnosed with stage 4 nasopharyngeal tumor 5/15.


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.  Check in Aug 12 & 13, I recently posted about 4 years since my last treatment, so now is as good a time as any to check in. The short story, 4 years out, no cancer, doing everything just like before cancer, but do have a batch of annoying side effects, mostly from the radiation. I complain a bit now and again, but very happy to be here.  Still here and still alive, came down with some Pneumonia again but that is due to not being able to swallow. Feeling like crap but that is all part of live.


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.  Check in,  Aug 12, 2016, Had a 10 month post treatment scan today - NED!!


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. Checking in Jan 2, 2016,  Coming up on my 7th year since dx and treatment for stage 4 Left Tonsillar cancer.  Doing well in that regard.  Underwent 3 full-blown surgeries for intermediate Melanoma on my right ear (between lobe and sideburn) in February, 2015.  After reconstruction of ear area, all is well except for numbness in that ear area.  Currently undergoing 30 dives of Hyperbaric Oxygen treatment for removal of a molar on my left lower side.  20 prior to extraction, and 10 after.  Extraction was 8 days ago with absolutely no pain, and I have only 3 dives remaining.  All this due to radiation from 7 years ago.  Each session of HBO has a duration of two hours per day.  Takes one heck of a commitment.  Check in July 11, 2016,After all the other stuff I've been through up to this point, on May,12th 2016, I was informed that I had a re-occurance of Melanoma in my right ear area.  Long story--short, I lost my entire right ear and ear canal.  I now have a flap over that area that was taken from my right thigh.  Surgery was 14 hours long with a team of 3 of the best on this earth.  Eight days in ICU.  SOBs tried to say I was aspirating and placed a feeding tube through my nasal passages to my stomach.  Wanted me to intake Jevity....which I did for 3 days at home.  They wouldn't release me till I agreed.  Surgeon from 09' stepped in and removed it and gave em hell.  New side effects...1)  Droopy right eye ( to be fixed Aug.12th).  2) Nerve damage to right side of mouth.  It "may" return to normal over time.  3) Very sore right lower jaw and burning around throat and former right ear area.  4)  And back to slow eating issues.  Only been a month and a half, but I'm ready to get this over.   


Cardoza33 (Tony) California.  Enrolled June 26, 2016.  Age 45.  Diagnosed Nov. 23, 2015 w/ SCC Tonsil stage 4. 2 cisplatin and 6 weeks of rads.  Finished treatment Feb. 3, 16.  May I had first NED scan. Feeling good.  Eating is a chore, ringing in my ears and some nerve issues, but otherwise feeling good and happy.


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!  Checking in Jan 18, 2016, Unfortunately, PET scan revealed that my cancer was the aggressive type that had grown back.  I had sub-total glossectomy and selective neck dissection in November 2015. Currently dealing with dry mouth, sore throat--hopefully these will be temporary. Since I lost my entire oral tongue (the part that moves) and was only left with the base of tongue, I have very limited mobility with the flap that replaced my tongue (from my arm).  Some days, I can speak well enough to be understood although it always sounds like I have a mouth full of something, other days my voice is so hoarse that I can barely make a sound--this seems to be related to the dry mouth and sore throat issues.  I have not been able to resume eating and survive on a peg tube.  I am also having difficulty drinking, although this seems to be improving and I am in swallow therapy. I do have lymphedema in neck and massage is helping.


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.  Checking in May 20, 2016.   just checking in and doing pretty good, Thanks to all members of CSN for the words of encouragement and all info.


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 been 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.  Checking in Jan 1. 2016  All is nice in my new-normal world, eating is a cautious and very enjoyable.   Trying very hard to maintain a strong immune system.  Lots to do


CLRRN (Mike) partner Chris, Maryland, joined forum June 2010, enrolled July 13, 2010. Reporting for partner Mike. DX’d SCC left tonsillar basaloid. Checked in August 7, 2011. MIA and checked back in June 3, 2013. Reported good news…some ailments but NED.  Checking in Jan 8, 2016, I joined when my partner Mike was dx w/Stage 4 SCC tonsil in 2010. He remained NED and doing great. He had all his teeth extracted (what he had left) in 2014 and got full dentures. Aside from his hoarseness and has no complaints.  Forever grateful to everyone for the support to me and all the helpful hints/suggestions to allow me to be a better caretaker.


Connieprice1 (Connie & Homer) Enrolled Nov 8, 2015 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.


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 nodes.  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 cisplatin’s 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!"


DarcyS Michigan, enrolled January 29, 2016.  joined 2015. Diagnosed in June 2012 with Piriform sinus cancer with 2 lymph nodes, stage iv.  6 weeks chemotherapy with Taxol, cisplatin and cetexamaub.  Clinical study with everolimous.  50 radiation treatments with imrt, inpatient with concurrent chemo, 5fu, taxol and hydrea.  3+ year NED.  


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.  Checking in Jan 18, 2016, I passed the 5 1/2-year milestone in December 2015!  Side effects continue unabated for me, no snot, no spit, no tears, but it beats the alternative. Still alive, still got teeth (mostly), 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,  Catskills, 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.  Check in July 29, 2016, It has been seven years since diagnosis.   Wow, what a journey!   I am doing very well with no recurrences.   I do have annoying post treatment issues that are a constant reminder of this journey.   I completed my treatment the end of October 2009.   I am very grateful for all I have and can live with the post treatment issues.   I have major dental issues since tx.   - Full upper and we are working on the best pathway for lowers this month.   I occasionally have difficulty chewing and swallowing - absolutely nothing y!    Food is definitely not a highlight which is okay since I can no longer smell or taste.   The only thing I can actually smell is Pine house is really clean!  After testing, the neurologist was unable to find out a reason for these losses and told me I just have bad luck.   I prefer to think I have great luck and am very happy to have survived the dx and tx. Good wishes for all who are starting this path and those that are looking back on the journey.


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!   Check in Sep 2, 2016 still alive and doing ok for the most part.  No health problems except depression.  Somedays worse than others.  This is a great place to be so if you've found your way here, you're in good hands.  I don't check in much any more but the people on this site are always in my prayers, even if i don't know you.  God bless you and make you cancerfree!!!


Denistd (Denis) Enrolled Nov 2. 2015 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


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.  Checking in Jan 8, 2016, still here.


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 physical 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. Checking in February 28, 2016.  March 2016 - Last visit with ENT moved check ins to 6 months, a good sign. Also confirmed that my BOT HPV+ diagnosis puts me at 3 years out past the main worry about recurrence. Whew!!!! Tight neck muscles still a near daily issue. Big improvement on eating "hot". Yippee. back to tolerance for hot - Love it. Still getting head sweats on hot-hot but not bad. All in all - everyday, thank God for good fortune! Don.  Check in Aug. 29, 2016, doing fine at 3 years post.  Crossed the 3 year post mark in June 2016. Doing great and living large every day!


downinthemouth Mesquite Nevada, enrolled February 18, 2016 Caregiver. Husband was diagnosed 12-31-2015. He has base of tongue, left lymph nodes and left tonsil stage IV. He has just completed his 18th radiation treatment of 35. 5th chemo of 7. . It's hard to see him in such pain, unable to eat and enjoy food (which was one of his favorite things to do). We moved to a small community two years ago after retiring. We have some good friends but none that really understand what is involved with this type of cancer. I'm hoping to find some help in how to deal with different situations. I thought I would reach out to those who have lived with this type of cancer and those who have been the caretakers.


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 February 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.  Checking in Jan 13, 2016, THE GOOD THE BAD AND THE UGLY. Trying not to be good because as Billy Joel sad only the good die young. Doing my best to be old, bad and ugly as I battle cancer for the second time, this time prostate.  Jeff


Dunedintech   (CPC), Singapore, joined forum 0


  • Christmas
    Christmas Member Posts: 100
    Checking in Sept 2016

    Sorry, have been too busy to check in.  Grandchild #2 arrived a month ago.  Still working long days.  Health good except for more dental problems.

  • CivilMatt
    CivilMatt Member Posts: 4,698 Member


    Glad to have you check in.  You must be one of HAWVET’s first enrolled member’s.  Happy to meet you.


  • MarineE5
    MarineE5 Member Posts: 1,027 Member
    edited September 2016 #4

    Good Day Matt,

    First let me say thank you for keeping this post going. HAWVET helped many here for years. He also helped Veterans with their claims with the VA when asked. Doing fine here, had another "All Clear" report in May 2016.

    My Best to Everyone Here

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    edited September 2016 #5
    Roll Call

    2years NED. Thanks to all that have been kind and supportive. Made all the difference to me.

  • Kenny-
    Kenny- Member Posts: 98
    Checking In First Time

    checking in ffor the first time. 

    Kenny, New Orleans, LA, Dx Stage II NPC SCC Sep 2015. Treatment with rads (70 gy) + adjuvant cisplatin + 5FU (2 cycles). Currently NED (Oct 2016). God is good, stay healthy and take a different outlook in life. This forum keeps me going.

  • MemphisTn
    MemphisTn Member Posts: 41
    edited October 2016 #7
    check in

    Recovering still, taste is still whacked, cant taste sweets, but veggies, chicken, pork and some bbq meats are good enough. Dry mouth at night, taking pilocaprine at bedtime and of course keep water near the bed to get through most nights. Second ENT follow up next week since post rads, dealing with some spine pain between my should blades, will most likely have to see an ortho to convince evil Cigna to pay for an MRI that they have refused from ENT. Some sore lymph nodes every now and then, anxious to discuss with onc at the end of Oct during first Rad Onc follow up. Back at work, enjoying the weight loss and praying this back issue is from laying in bed for 2 months. Forum is head and shoulders above the rest I looked at, thank you all for your willingness to share.

  • Nidociv
    Nidociv Member Posts: 12
    edited October 2016 #8
    Check In

    Randy in Lisbon, Ohio--DX May 2008 Stage 4 BOT and into nodes on left side of neck. Did Chemo and Rads, No surgery then. Same swallowing and saliva problems ongoing. Getting ready to schedule my 2nd surgery for osteoradionecrosis. 1st surgery, we tried the easier way ( tissue and vessels from Leg)  Now they will do a complete jaw bone replacement with bone from my lower leg.  Having this done at The Cleveland Clinic. Not looking forward to this, the 1st surgery was way more than I imagined but we got to push on. Also have done 60 HBOT treatments for teeth extractions and the last oral surgeon I used, broke my jaw and  I now also have a very P.I.T.A. titanium plate that has a piece coming thru my jaw. Yes there's a hole with metal sticking out. That will also be replaced in surgery. Thank God I am NED since original treatment. Good Luck everybody and God Bless. Joined this site on Wednesday, September 23 2009.

  • dvr99174
    dvr99174 Member Posts: 19
    Checking in first time

    Arthur, Orlando, florIda. Stage 1 squamous cell cancer behind and below left ear behind jaw bone. In May I was diagnosed, didn't get surgery until August 9th. I lost 30lbs because I could not open my mouth enough for solid food. I lived on ensure and yogurt...... Yum

    i had a second surgery on september 13 to repair tissue damage, my jaw bone was exposed. I had a tissue graft from my left chest to replace what was taken during surgery. Also, had tissue taken from my left temple for repair during the 2nd surgery. 

    this Tuesday I start my radiation treatment. 

  • jackflash22
    jackflash22 Member Posts: 524 Member
    jack flash

    I'm still here. 2013...Diagnosed back of tongue cancer. Had surgery, reconstruction and radiation. Throat completely closed from radiation, had tube for 18 months. Had op to open throat. Opened enough to take liquid food. 100% better than tube food. Small i'ntestine cancer 2015 neuroendoctrine not related to throat. Had surgery. Follow up scan next January. Small cancer on eyelid related to sun. Removed and reconstructed. Over all health good. I'm now on check ups three months apart. Was on monthly, then two monthly now three ..progressing. lost partner 2015 while ill with bowel cancer. Was going downhill until son bought me a miniature dachshund puppy. Turned my life around he's adorable and relies on me and loves me to bits and me him. Didn't know I could love something so much. I get him to take me for two or three walks a day. We cosy up in my chair. Don't get mu;ch spare time any more it's like having a baby all over again. Life is good.

  • wmc
    wmc Member Posts: 1,804
    Just had my 3 year check up.

    Checking in. T3;N0;M0; Supraglottic SCC. Lungs were too bad to survive surgery or radiation. Only choice was to have a full laryngectomy with a neck dissection on both sides,and breath through my neck. Not a hard choice to make. Never had Chemo or radiation. They put in a prosthesis [TEP] which lets my still speak with my voice. Not quite the same, and very life changing learning to eat, swallow, and speak all over again. Three years cancer free.

    Bill  10/02/2013

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    edited October 2016 #12
    Check-in for 2016

    October 24, 2016.   2015 ended OK.  The second resection went well and healed nicely.  I had a de-bulking of the resected jaw line in May 2016, and now working on getting a long denture on my bottom row of teeth.  Implants were not possible due to the thinness of the left jaw in some places.  Hope to have that wrapped up by early 2017.  Still having major eating and swallowing problems, but keeping my weight up with Boost, etc.  I hope to have a book out in 2017 about my experiences as a cancer patient and survivor.