ROLLCALL 2016 - CLOSED 3.1.16 (SEE UPDATE)
ROLL CALL 2016
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 start of ROLL CALL 2016 we have had 186 members who enrolled since 2008. There has been a number of new H&N members during the past year, all are welcome to participate. As always the ROLL CALL thread is completely voluntary and just for the enjoyment and information it provides.
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. 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, 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.
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 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<span style="mso-spacerun: yes;"
Comments
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Thank you Matt for continuing this.
WMC Bill I live in Visalia, Ca. It is in the central cal just below Sequoia National Parks.
I was cancer of the Larnyx, suprsglottic just above vocal cords and pushing on the left one. T3;N0;M0; No HPV, they did my surgery at Stanford Medical and when they took the larynx they got it all, and did neck dissection 86 total lymph glands as a precaution, that was Oct 2nd 2013. Passed my two year and still NED.
Thank you Matt for continuing this and also for all the support and wonderful advise to all the "New Members" to the family. I know, stay hydrated and swallow that water. It almost sounds silly we all tell everyone to do this, but it has been the best advice I got, and it was from you.
Bill
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Need to update
Swopoe- caregiver to husband, age 41. From Houston, TX. Husband diagnosed with oral tongue cancer (SCC) in October 2015, stage 1. No spread to lymph nodes. Perinueral involvement. Being treated at UT- MD Anderson and Memorial Hermann Hospital in Houston. Partial tongue removal (clean margins) and selective neck disection in November 2015. 30 Radiation (IMRT) and 6 rounds of cisplatin started December 2015. Doing well with treatment as of 1/2/16.
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Roll Call Check In
My name is Greg and i live in Upstae SC. I was diagnosed Oct 2014 with Stage 2 tonsil cancer on my left tonsil (squamos 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 fornuate to have caught the cancer early. Good Lord willing, hope it's gone forever.
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Checking in
Coming up on my 7th year since dx and treatment for stage 4 Left Tonsilar cancer. Doing well in that regard. Underwent 3 full-blown surgeries for intermediate Melonoma on my right ear (between lobe and sideburn) in Feburary, 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 committment.
Larry
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Check-inCajunEagle said:Checking in
Coming up on my 7th year since dx and treatment for stage 4 Left Tonsilar cancer. Doing well in that regard. Underwent 3 full-blown surgeries for intermediate Melonoma on my right ear (between lobe and sideburn) in Feburary, 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 committment.
Larry
61, now, and will be 7 years out to the good come early-April of 2016! Update issues are that the neck spasms have gotten much worse to the point of being under the care of a Neurologist with 2 meds helping to deal with. And, dental bills are over $12K, but all was good with my last check-up.
kcass
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Laralyn, checking in for
Laralyn, checking in for 2016! I just finished the first half of front-line treatments for lung cancer. I'd like to remind all HPV+ H&N cancer patients to request lung cancer screenings even after the three year mark. Studies (and my personal experience) are starting to show there can be a longer than usual delay in HPV+ cancer appearing in the lung (whether it is metastasis or a new primary).
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Still HereLaralyn said:Laralyn, checking in for
Laralyn, checking in for 2016! I just finished the first half of front-line treatments for lung cancer. I'd like to remind all HPV+ H&N cancer patients to request lung cancer screenings even after the three year mark. Studies (and my personal experience) are starting to show there can be a longer than usual delay in HPV+ cancer appearing in the lung (whether it is metastasis or a new primary).
Tommy here. DX'd in late 2011 with base of tongue Mucoepidermoid Carcinoma, stage III. It was a fairly large tumor where the docs needed to use TORS to get it out. Never felt pain like that in my entire life and hope I never do again. Pain meds did nothing to ease the severity. Tumor removed in November of '11. Doc let me heal for over a month then had a radical right neck dissection in January of '12 to remove one visible lymph node. 2 were positive and he took out about 35-50. No chemo luckily. Was told it would have no effect on my type of C. Went through 25 radiation treatments to get the rest. Once again, luck was on my side and he (my onc) suggested a slightly lower dose of rads. That may be enough to keep my teeth longer.
As of today, I am 3 years, 9 months away from my last radiation treatment. (April '12) Last PET was NED.
I am proud to be part of this wonderful group of survivors. Part of me feels a little guilty that I got away with only having a less dangerous type of cancer. Time will tell if that is true. Nothing is guaranteed.
Happy New Year!
Tom
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My husband, Jim, is still
My husband, Jim, is still doing well. Had a lung biopsy January 2015, which revealed lung mets from osteosarcoma of the mandible. Doctor missed a second spot, so we are now being followed at UT-MD Anderson in Houston. Currently, Jim has three spots on the lungs that they are watching. They are growing, but luckily very slowly. The plan is to continue scans every three months. At the point that they need to come out, we will do surgery. Chemo is currently off the table, and prognosis is great. God Bless All in the coming New Year!
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I'm from Visaliawmc said:Thank you Matt for continuing this.
WMC Bill I live in Visalia, Ca. It is in the central cal just below Sequoia National Parks.
I was cancer of the Larnyx, suprsglottic just above vocal cords and pushing on the left one. T3;N0;M0; No HPV, they did my surgery at Stanford Medical and when they took the larynx they got it all, and did neck dissection 86 total lymph glands as a precaution, that was Oct 2nd 2013. Passed my two year and still NED.
Thank you Matt for continuing this and also for all the support and wonderful advise to all the "New Members" to the family. I know, stay hydrated and swallow that water. It almost sounds silly we all tell everyone to do this, but it has been the best advice I got, and it was from you.
Bill
Bill, I don't check the site much anymore, but noticed the roll call thread this morning. I was raised in Visalia. MWHS class of 1979, lived on Terrace Ave. (now street) behind Visalia Fair Mall. I now live in Cypress, TX...which is north of Houston. I miss Sequoia National Park! Best wishes to you and yours.
Chuck Bybee (rushfan)
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Checking in...no changetraceyd1 said:My husband, Jim, is still
My husband, Jim, is still doing well. Had a lung biopsy January 2015, which revealed lung mets from osteosarcoma of the mandible. Doctor missed a second spot, so we are now being followed at UT-MD Anderson in Houston. Currently, Jim has three spots on the lungs that they are watching. They are growing, but luckily very slowly. The plan is to continue scans every three months. At the point that they need to come out, we will do surgery. Chemo is currently off the table, and prognosis is great. God Bless All in the coming New Year!
Good morning all,
The only change to report from last roll call is very dry skin on my trapezeus muscles near my neck and some flash jaw pain. Other than that, doing well. Teeth and gums are holding up. I'm still dry at night. I can eat most everything, with the exception of white meat chicken, pork chops or lean beef. I still need to be careful swallowing. I know I'm very fortunate.
Best to all,
Chuck (rushfan)
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btw, my Rad OncRushFan said:Checking in...no change
Good morning all,
The only change to report from last roll call is very dry skin on my trapezeus muscles near my neck and some flash jaw pain. Other than that, doing well. Teeth and gums are holding up. I'm still dry at night. I can eat most everything, with the exception of white meat chicken, pork chops or lean beef. I still need to be careful swallowing. I know I'm very fortunate.
Best to all,
Chuck (rushfan)
said the flash jaw pain was likely nerve damage / late effects from radiation and nothing to worry about.
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Roll Call Check In
CLRRN-
I joined when my partner Mike was dx w/Stage 4 SCC tonsil in 2010. He remaind 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.
xoox
Chris
Grasonville, MD0 -
Still Kicking (cancer's butt for the second time)
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
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Checking InDuggie88 said:Still Kicking (cancer's butt for the second time)
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
Thankful for NED on most recent scan
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Roll Call 2016
We are now starting to check off our 5-year anniversaries. It was during the first week of January '11 that a lump on the left side of his neck became noticeable enough for Nick to mention it to me. So, four and a half years out from the conclusion of treatment in June '11 for SCC BOT, Stage IV--35 radiation/3 cisplatin-- things are going well. No teeth problems this year, but they are the gift that keep on giving. The main residual complaint is a lack of energy or an energy store that is easily expended. All indications are that this is a thyroid problem, but last test did put him in a normal range.
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Checking infishmanpa said:Still Kickin'!
fishmanpa... a little over 2.5 years out SCC H&N Tx N2b MO Stage IV HPV+ ...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
"T"
diagnosed with stage 4 tongue cancer (oral tongue) April 2015. After surgeon stopped my hemi-glossectomy procedure (after I was already under) in May 2015 because the cancer had grown so much, I went on to have 35 radiation and 3 cisplatin treatments. 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 lymphadema in neck and massage is helping.
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