ROLL CALL 2017 - CLOSED
ROLL CALL 2017
First Updated January 30, 2017
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.
The final ROLL CALL 2016 we had 211 members who enrolled since 2008. There were 83 members either checking in or enrolled for 2016. Which leaves me shy of the desired 100, but still a healthy number. Come on H&N members, make HAWVET proud. I would like to get at least 100 check ins or new enrollments for 2017. H&N members need to be counted.
So far for 2017, we have 2 members.
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.
H&N 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. 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.
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
behindthepen Jeff, from Massachusetts, enrolled October 26, 2016. Bottom of Tongue with metastasis to lymph nodes. Just finished 15/33 rads and 3/6 chemos at MGH. Throat starting to give me trouble, eating has become work instead of pleasure, but still playing hockey, so I'm not beat yet
bild (Bill) Las Vegas, NV. Enrollled Dec 21, 2016. Diagnosed in the last days of 2015 with hypopharyngeal SCC. First trach and feeding tube in end of 2015, my feeding tube has just celebrated it's first (and last) birthday. 8 cisplatin, 44 rads, then in October a laryngopharyngectomy (I'm not proud that I can spell that). I now have a permanent trach, can't smell anything, but I can eat and expect to lose feeding tube soon. Taste is not the same, but it's not too bad, and this eating thing is way better than Jevity. Can't talk, but maybe soon, with a voice implant if all goes well. Haven't had a PET scan since surgery, so I can't claim NED, but soon, maybe. So, in 2016, 2 trachs, feeding tube, medi-port, 2 pneumonias, surgery and no food for 12 months, but I had my cancer removed, so all-in-all, a good year!
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! Checking in Sept. 22, 2016 2years NED. Thanks to all that have been kind and supportive. Made all the difference to me.
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. Checking in, September 21, 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.
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. Checking in Jan 30, 2017, coming up on 5 years in March. That is a number I have been waiting for. Thank you to H&N members for all you so.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!"
Daisynbax Shannon, from the Tampa area. Enrolled October 30, 2016, I was diagnosed with SCC (lateral tongue) on Wednesday. I go for my consultation at Moffitt on Nov. 9. Since I am just at the beginning of this road, I am basically absorbing as much information as I can.
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 Sol........my 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.
Debi16043 state unknown, enrolled November 13, 2016. Scc gum cancer spread to mandiblediagnosed 2011. I had 16 hour surgery MD Anderson. Removal of all teeth, and scc gum cancer that spread to mandible. Stage 4. had 8implants put in, free flap fibula to create new jaw bone. Radiation. Removal of 72 lymp nodes onone side. Staging was T4, N0, M0. Radiation complications to date include carotid artery stenosis but still working and killed thyroid so i take meds for that. Recovery went well but 3 years after initial surgery an xray found new jaw bone, fibula free flap, as well as titanium plate had broken in 2 places. Advised to redo surgery. Sept 7, 2016 i went thru same surgery again at md anderson this time using my other fibula. after week in hospital, one month with feeding tube... not even a drink of water for a month im finally recovering. Its been 2 months and feeding tube is removed along with my trach... my leg wound from fibula removal hasnt completely closed but im riding my bicycle again... im out and about attending football games.. leg is still sore.. not much feeling in top of foot or jaw. This time they replaced from under my right ear to one inch past chin, a large area.... feel free to ask me any questions. Im not on here much but you can email me at debi16043@gmail.com with questions or if you want me to text a picture of what i look like after 1st surgery in 2011 and now following 2nd surgery in Sept 2016.
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 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, 2015. Checking in February 28, 2016 - Still based in Singapore. Had a checkup recently and all NED. Three year scans / MRIS etc in March so hoping all trending NED. Don't post as much as I used too but still read the boards daily. One day at a time.CPC
dvr99174 Arthur, Orlando, Florida Enrolled Oct. 20, 2016, 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.
Ekdennie, Oklahoma, enrolled January 17, 2011. DX 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, cisplatin and taxentered then seven weeks of carboplatin 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 ?
Fire34 (Dave) Coal City , IL about 60 mile SW of Chicago. Enrolled January 21, 2016, 6 years post, SCC unknown primary HPV+, clinical trial at the University of Chicago. Trial consisted of 8 weeks induction chemo with Erbitux and taxol. Followed by weekly Erbitux and 5 alternating weeks of twice daily radiation (don’t know the dose) with 120 hrs of 5FU and hydroxyurea.
My side effects were numerous I was never home for the 5 weeks I should have been. The 18 weeks total I was in treatment I believe I made it home for maybe 5 days. PEG tube, dual lumen port etc. Wish I would have found this site while going thru treatment. Wishes & prayers for all still going thru treatment Checking in November 17, 2016 Still checking in once and a while 7 years post now, everything is going fine now, still a little dry from time to time.
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, broken 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. Updated Feb 1. 2013. Checking in Jan 15, 2014 Had 4 teeth removed, 4 checkups and continued NED. Update as of 1-15-2014, the year 2013 was not all that fun.... teeth are really bad, a couple i had removed 3-4 years ago have now lead to necrosis of the mandible. soon to be 18 years on the 19th. Checking in July 21, 2015 (fisrpotpe = forced into semi-retirement put out to pasture early), last checkup showed nothing to be concerned about with cancer
Fishmanpa"T" (Mark) Royal, Virginia>>Shenandoah Valley, Virginia. joined forum January 2013, enrolled February 1, 2013. Diagnosed Nov 2012 - SCC Tx N2b Stage IV HPV+ , Selective neck dissection - 23 nodes removed two cancerous - 6 weeks chemo 30 rads. Treated at Johns Hopkins Feb - April 2013. 2 years post April 24th - Still NED. Positive thoughts and prayers. Check in July 13, 2015. Checking in Jan 13, 2016, Still Kickin! a little over 2.5 years out....doing Ok. I go next month for my 6 month follow-ups and expect to say hi to Mr. NED. Living life in the "new normal". Positive thoughts and prayers. Checking in February 29, 2016, NED as of Feb. 2016. Going on three years out (4-24-2016) and doing well. next "poke,scope and prod" August 2016. Positive thoughts and prayers."T"
Flyfisherman enrolled January 21, 2016, SCC base of the tongue. Partial Neck Dissection surgery at Wake Forest Baptist Medical Center (tonsils and 5 lymph nodes) with 6 rounds of Chemo (Cisplatin) and 30 rounds of radiation. Completed the process on June 23 2015. So far, all is good with a Dr visit earlier today and a wonderful nose scope! I am truly blessed to be here and it's all thanks to the wonderful care I have received and the support of my family and friends.
Fritz (Freddie) Warner Robins, GA Enrolled Sep. 2, 2016 Diagnosed March 1, 2016 with Stage IVA Tonsil Cancer (T2N2aM0) with spread to base of tongue ,soft palate and nearby lymph node. Surgery on April 20, 2016 to remove tumor and both tonsils as well as modified radical neck dissection to remove 24 lymph nodes on tumor side. Began Cisplatin infusions along with 33 radiation treatments on June 1, 2016. Finished all treatments on July 15, 2016.
gdawg55 (Greg) Upstage, SC. Enrolled Jan 2, 2016. I was diagnosed Oct 2014 with Stage 2 tonsil cancer on my left tonsil (squamous cell carcinoma). I had surgery on Dec 31 2014 to remove my tonsils as well as had a neck dissection to look at my lypmh nodes. No cancer was found in my lymph nodes and they were able to get good margins around my tonsil so I didn't have any other treatments. I just passed my 1 year anniversary and I'm NED. Upon analysis of my tumor after surgery they changed me from Stage 2 to Stage 1 so I guess the tumor wasn't as large as first thought. I was fortunate to have caught the cancer early. Good Lord willing, hope it's gone forever.
Goalie, DC/Maryland area, DX’d unknown but checked in on February 5, 2013 that was treated two years prior to this posting. Doing well except needing water and an increasing stiff neck condition.
Grandmax4, Green Camp Township, Ohio, enrolled January 19, 2013. DX’s September 2011, November 2,2011~~de Vinci robotic full neck dissection to remove a mass on my epiglottis . Scc and very blessed that the cancer had not invaded my lymph nodes. No chemo or radiation required. All is well and can eat anything. Checking in July 20, 2015 Forever Grateful. Months of speech therapy, feeding tube, and determination to beat this monster has brought me where I am today~~~~~and my God…..July 28 is my 4 year check-up, even though I think I'm fine, there's always that nagging little doubt. Bless you all .Checking in Dec 10, 2016, Checking in~~~5 years, 1 month, 8days..cancer free, loving life~~~declared cured, I'm always afraid to say that, there is, and always will be, the little tinge of fear. Merry Christmas everyone and may 2017 be a fabulous New Year!
Grandmudder (Tony) BC Canada caregiver to Husband Tony Stage 4 A finished treatment August 2014 Still NED 
Greg53 (Greg), St. Louis, Missouri, DX SCC right tonsil, enrolled 07-20-2010. Checked in January 21, 2013. Almost 3 years out and doing well. <span style="font-size: medium;"
Comments
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Letumwork
Diagnosed with NPC in February of 2013. T1, N2 Stage 3, SCC Undifferentiated, HPV16+. 3 rounds of Cisplatin concurrent with 35 radiation treatments followed by more Cisplatin with 5FU. All treatment was performed at John Muir Medical Center and Stanford. NED since the treatment. Side effects- Peripheral Neuropathy in the hands and feet, 50% loss of hearing in left ear and some balance issues but very happy to be alive. Had to retire from the fire service a little early but keeping busy and enjoying life. Still living in the Bay Area but hoping to move to Idaho when my Daughter graduates.
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My dad still around and kickin' !!!!!
Hi all! It's been a long time since I came here! This board was a great help to my family during my father's treatment back in 2012. So I decided to come back here for all the newcomers and give them hope - my dad is still healthy, happy and still kicking!!
His original diagnosis on May 2012 was: Ca Oropharyngis T2N2bM0. It started on the base of his tongue, spreading down and little to the other side of the tongue. Lymph nodes on the one side of his neck - fine needle biopsy showed SCC and were very big. The biggest package of lymph nodes was 8 cm big!
By the time tx started, he already had T3N2bM0. His treatment took place from July to September 2012: 35 rads with 7 concurrent chemoteraphy (Cisplatin). No surgery. A year later (Sept. 2013) he had a surgery where they took out 15 lymph nodes from his neck because one of them looked suspicious on ultrasound. All were clear, thank God!!!Now is 2017 and he is doing great. His taste is almost back and also his saliva. He can eat pretty well without much trouble. Only dry meat or other dry food is harder to swallow. Radiation left some "gifts", such as: the skin on his neck is very much damaged. He has some neck cramps and stiffness. Sometimes, when he swallows, the food goes wrong way and gives him that "choking feeling". But other than that he is doing great and enjoying life!!!
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Every Year Since 2011
No change from my last wordy statement. I should have just stated the few facts and let the rest go. Still checkin' in to see how my good forum friends are doing and to also see if any MEC cases show up.
Tom
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Still doing what I can.
Thank you, Matt. I don't get to get back that often. I spend so much of my time with the Laryngectomee group. Still making videos to show my fellow Lary's we can do so many things they [Medical field] say's we can't do. As a Neck breather, we are told daily you can't do that anymore. So, we respond "Yet", I can't Yet. You should have seen them when I was waiting for my SLP to come back with her supplies and I was playing the Harmonica. She just laughed, and said, of course you can. I guess we get another video? I now have 9 and need to get busy and make 3 more. They help the "New" Lary's see there is hope. The videos have now reached 87 countries. You can find them on YouTube just type wmcross51 in the search.
As I was reading the last of all our friends we have lost, it brought tears. So many names that were a part of my life, it hurts. I have lost 6 in the last few months to cancer. Lost my Brother as well. We all do the best we can, and just one day at a time. NGU, Never Give Up.In all, I am good and had to have a minor emergency, but they held the office open for me to turn around and get back to them. The team all stayed and cut a growth out that was blocking my airway. Please know I do think of everyone daily, and pop in when I can. I thank you all for being there when it was pretty dark for me. I love and still pray for you all. The prayer list has grown so long, I just hold up the Book, and say you got this right. I just had 40 months and my 3 year check up was good. I might be the only one who looks forward to them. I get to see my Doctor that saved me.
Bill
WMC Oct 2, 2013
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Moving along
Don Buckalew, Charlotte NC
Enrolled Aug 15, 2016, Diagnosed with Stage iV scc in October 2015. 7 rounds of erbitux and 35 rounds of radiation. Finished treatment 3/7/16. 3 Scans since and NED on each. I have regained strength, weight and taste. Life is good. All my fellow warriors are in my thoughts and prayers.
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Still here as well,
Still here as well, insecurities, paranoia and all. 14 months post treatment, 10 months post diagnosis. Just had latest Oncology NED and doing fine. Finally got back up over 170lbs (was 260+ at diagnosis), getting strength back gradually but so many mental issues nonrelated to the stage IV supraglottal 4cm carcinoma diagnosed with. Happy to still be kicking and thankful to all of people here who helped me, advised me and comforted me when I needed it most. I wish I was able to offer all of that to people as well, but I have a lot of issues with socialization, so please forgive my inactivity and failure to reciprocate fully. You people are awesome!!
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Brand New..hope I am doing this correctly
Hello, Everyone. My name is Lisa Gamble, I'm 50 and I live in Palmyra, NJ. I just found and joined this site yesterday (2/17/17). After months of endless run around and doctors throwing everything at me but the kitchen sink-- as my symptoms got worse and worse, I was finally biopsied on Jan 26th. At that time I could only (physically..not just due to pain) open my mouth less than a 1/2 inch. The Dr. at the Temple oral and maxillofacial surgery center Numbed everywhere she could reach, waited 5 minutes, spread my mouth a bit more, numbed again, waited again and then used a spreader to literally pry open my jaw to the point where she could take a biopsy. I wouldn't wish that pain on anyone!! But after she numbed me more she was able to cut in and take what she needed.
On Monday afternoon (Jan 30th) she called me to ask me to come in to go over the results of the biopsy first thing Wednesday (2/1).At that time she told me the biopsy had come back as cancerous, and they had made me an appointment at Fox Chase Cancer Center For Monday (2/6). I won't go into everything that I felt and thought at that moment, because this is going to be long enough! On Monday 2-6 I met with the head and Neck Oncologist. She scoped up (down?) my nose to see what she could since I could not open my mouth, ordered a CT scan, and changed the pain medication from the 5/325 Oxycodone I was on, to 20mg Oxycodone (which I hoped would mean I'd get more than 45 minutes a sleep at any one time) because, as she put it, I had cancer not a toothache. On Tuesday, I met with the Medical Oncologist-Who added a 50 mg Fentanyl patch to my pain management and explained what her role would be if it was determined I needed Chemo. I also met with the radiation oncologist. He scoped my nose again, explained to me what his role would be, and talked to me about a possible clinical trial.
On Wednesday 2/8 at 6:30am I had the CT with contrast. Went home and then came back to go over the results with the Head and neck oncologist at 1:30. Unfortunately, she wound up getting stuck in the OR. Her resident told me she would call me later that day. She didn't, nor did she call on Thursday..by Friday I was out of my mind, but she did call Friday afternoon. I have Stage 4b SCC of the oral cavity (there is more to it/has a proper name but my mind is fried at the moment) and because of the size of the Tumor and the advanced nature (impacting muscle, bone, nerves, two lymph nodes..etc) she decided--after consulting with several others--that surgery was not feasible at this time. She wanted an MRI and I had appointments to discuss options with the Medical and Radiation oncologists on Tuesday. The nurse Coordinator called me Monday (2/13) morning to let me know she had set up the MRI for that afternoon. On Tuesday 2/14 I met with the Medical oncologist, we talked about options for treatment, possible side effects..etc. We decided on straight chemotherapy with three different meds: Cisplatin & Taxotere administered at the center and then 5-FU administered over 4 days via a port at home. with a reevaluation after 3 courses to determine if the Tumor has shrunk to the point that surgery is feasible. My first treatment was set for Friday 2/17. I then met with the radiation oncologist who explained that while he would be monitoring my progress, he wouldn't be seeing me again until the point of reevaluation.
Many of you may not understand my next step, but having felt like I have had no control over just about anything that has been going on with my body, and being told that hair loss was more than likely with the Chemo I would be having, I decided to shave my head. On Thursday, 2/16, a girlfriend of mine who owns a salon, opened after hours for me and my husband and she shaved my head for me. Her daughter videoed it, and I shared it with those who have been with me on this crazy ride (and even those who haven't).Yesterday, Friday 2/17 I arrived at Fox Chase at 7:30am first for blood work, then for the Port placement, and then for the Chemo. Unfortunately, (and we knew this would be a possibility) they couldn't put in a port because they were booked, so a Picc line was put in instead. The administration of the chemo went of without a hitch and by 2:40 the pump for the 5-FU was attached and I headed home. I go back Tuesday 2/21 at 9:40 to see the Medical Oncologist and then at 10:20 I'll have the Fluid and Electrolyte infusions, the pumped detached and the Picc line taken out. So that's where I am...I thought I'd tell you all this before I ask a question. Thank you for listening.
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Bebo12249 Enrolled Oct 29,
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!!..... Feb 2017, had 16 month post treatment scans - NED!
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Still here
pretty much the same as in 2015.....
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AnotherSurvivor (John) Parker
AnotherSurvivor (John) Parker, Colorado. Retired, 64 y.o., married to an incredibly strong and intelligent woman. Stage III T-3, N-1, M-0 +HPV SCC confined to right tonsil. DX 10/25/16. 35 IMRT treatments with 7 Carbol/Taxol chemo treatment. First treatment 11/15/16. All treatments at Skyridge Cancer Center or Kaiser-Lonetree, Lonetree, Colorado.. I found Skyridge and Kaiser to be phenominally effective, I would rely on them for treatment again without hesitation. Dr. Scott Kono was my chemo oncol, Dr Mark Edson was my rad. Both docs are as good as you can find, including at places like MD Anderson (where Dr Edson just completed a fellowship). The quality of their support staffs are perfect, the Infusion Center at Kaiser became almost a second home.
On 12/07/16, after repeatedly passing out on the floor, I was admitted to emergency care at Skyridge hospital where 3 pulmonary embolisms were discovered. Total of 10 days of in/out hospitalizations destroyed any sense of continuity. Full treatment for my cancer continued during my hospitalization, they wheeled me to the beam in a bed. It was hard at the time, but I finished 1 day later than originally scheduled. Sentenced to 12 months of daily subcutenous Lovenox injections in my belly for the embolisms. Completed cancer treatment 01/03/17. No PEG, I did get a PICC during the first hospitalization. Started at 218 lbs, ended at 177 lbs.
Today, I just completed week 7 of post-treatment, slightly over 100 days since diagnosis. Weight is usually +181 lbs, I consistently get down +2,000 calories, but it's pretty much just nutrition shakes. Mixed blessing, current weight is considered a healthy weight and my vital signs say I'm very healthy, but my muscle mass is gone, simple tasks are a challenge. Overall, everything is improving, none-the-less my general life confidence is pretty well trashed. Some days are better than others, but my main concerns today are dry-mouth, lack of taste, spotty sleep. Some days I am constipated, I'm doing powdered fiber and Senna, and eventually that works. Right now I'm simply trying to heal up my last mouth sores, figure how to deal with dry-mouth, and start sleeping. Spring is coming, and I need to push myself to be more active. PET is still 5 weeks out, but I feel pretty good about my odds. Overall, I feel more numb than lucky.
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I'm here, Matt!
After surgery at the end of June, 2016 (partial maxillectomy, with skin graft in left inner cheek), for SCC of the alveolar ridge and buccal mucosa, I had 33 rads, 4 Cisplatin, and 1 Carboplatin. Treatments ended at the end of October, 2016. Just had my 3 month PET Scan and all looked fine. Swallow test was also fine. My next check up is at the end of April, with just my surgeon and the next scan (CT next time) is in late July. I haven't been on the boards since before my treatments ended but will start participating again. Now comes the part where I worry between now and the next check-up, and learn to deal with the side effects and the fact that the radiation changed my smile and my neck. That's going to take some time.
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Alive and well
New to site. Love it.
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Roll Call
Haven’t checked in for quite a while, however do lurk routinely, Diagnosed November 2012, Stage IV SCC left tonsil, tonsillectomy and left side neck dissection to remove lymph nodes December 2012, completed radiation and chemo March 2013. Everything fine until 2016: Almost exactly my 3 year anniversary, I had a heart attack and bypass surgery in March. December 2016 diagnosed with prostate cancer. Awaiting treatment options from my original oncologists. Here I go again, new dance same old partner…
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I need to update this. Not
I need to update this. Not all above is accurate.
swopoe- enrolled October 2015. Houston, TX. wife/caregiver to Ethan (age 42), diagnosed October 2015. SCC Oral Tongue cancer, stage 1, HPV-. Non smoker/non drinker. No node involvement. perineural invasion. Neck dissection and tumor removal surgery November 2015. 6 rounds of chemo (cisplatin) and 30 rounds IMRT radiation started December 2015, completed January 2016. NED scans February 2016, May 2016, August 2016, November 2016. Last checkup February 2017. Next scan June 2017.
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2 Years and Looking to Move on With Life
Stage IV, SCC. Surgery, 6 weeks rads with weekly cisplatin. Body is feeling well but side effects a plenty but choosing to not think about it much. Currently dealing with a large blood clot in the exterior jugular vein which is said to be from surgery and rads. Showed up on the year 2 PET. On blood thinners to try and dissolve. Anyone else end up with a blood clot issue in the neck? Wishing you all the best.
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