ROLL CALL 2017 - UPDATED AUGUST 11, 2017 (CLOSED)
ROLL CALL 2017
5th Updated August 11, 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 221 members who enrolled since 2008. There were 83 members either checking in or enrolled for 2016.
So far for 2017, we have 61 members checking in or enrolled.
In the old days HAWVET would seek out a reply from those who fail to check in, I will try remote sensing.
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.
Andy13460 Republic of Ireland, Co Mayo. Enrolled April 22, 2017, Hi I started with a sore throat end of August 2016, visited a G.P. 1 st week in November. G.P. finally sent a referral letter to an ENT consultant 12th Jan 2017. I got to see the consultant 28th February 2017; he felt around my tongue and said there and then there was a growth inside my tongue at the base right hand side. 6th March 2017 head & neck MRI scan; CT scans head, chest, abdomen & pelvis. 13th March 2017 In for Results 2.2cm tumour with what looks to be 1 lymph node so it came up as T2:N1:M0 (CT chest, abdomen & pelvis nothing showing up) He couldn’t do the biopsy to far back so he referred me to a colleague who could, 1st appointment 27th March2017 with this consultant and biopsy arranged for 29th April under a general anaesthetic. Results in for the biopsy 7th April 2017 SCC HPV+, to far back for surgery so it will be 3 Cisplatin day 1, 22 & 44 with 7 weeks IMRT radiation. Back to the present time I see a radiation oncologist 25th April and treatment hopefully will start around the 15th of May. I'm 241 days from first symptoms. Checking in July 11, 2017 Now 2 weeks after treatment finished. Home in the west of Ireland3 Cisplatin & 35 IMRT zaps T2:N1:M0 BOT HPV16+ Going back to work in just over 2 weeks time, off meds and getting back to eating and tasting food again.
AnotherSurvivor (John) Parker, Colorado, Enrolled Feb 19, 2017, 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.
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. Corrections January 31, 2017.
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!! Checking in Feb. 18, 2017 had 16 month post treatment scans - 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.
Bob Watt Invercargill, New Zealand. Enrolled Jul 14, 2017 Finished treatment for Tonsil, Lymph Node, HPV+ Stage IV, 21 April. Had a rough ride for first few weeks post, but now taste buds have returned, eating reasonably well, and dry mouth is a plague from the desert, I'm sure. Lost a bit of weight, but heck, I'm alive, what more can one expect
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. Checking in May 15, 2017, Vastly improved over last time I checked in. No complaints back to100%
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.
Charlize (Charlize) Calgary, Alberta
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. Checking in May 25, 2017, The adventure continues. Focusing on dental care and dental work. I had the hyperbaric treatments in December and had two lower right molars removed with no problems. Now I have to look into lower left molars. The problem is NO saliva or bad saliva, so there is no good bacteria to keep my teeth healthy. I now have a referral to see a dental specialist/oral surgeon at Stanford Medical Center. The appointment is several weeks ago.Staying healthy -- 14 years since my NPC treatment...Best to all!
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 caregiver to husband Tom, 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. Checking in July 28, 2017 Coming up on 4 years, doing well. Trying to encourage hubby to retire so we can travel in our motorhome....Donfoo, maybe our paths will cross on the road or in a campground...
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 do.
CJK HNSCC Pennsylvania Joined June 5, 2017 Hello. I am a head and neck cancer survivor from Pennsylvania and I just joined this forum. I was diagnosed with Stage IV squamous cell carcinoma (HPV+) in June 2016. The primary tumor was in the right tonsil and I had metastases to 15 lymph nodes in my right neck. I had a neck dissection to remove 41 lymph nodes in July followed by robotic surgery to remove my tumor along with my left tonsil and a retropharyngeal lymph node in the back of my mouth. The surgeries were successful but, during the neck dissection, they found that one of the lymph nodes was attached to the accessory nerve to my trapezius muscle. They cut the nerve and did a nerve graft using a sensory nerve to my ear area, which helped to return some functionality to my shoulder but also resulted in extensive and prolonged numbness in the side of my face/neck. In Sep/Oct 2016, I had 7 weeks of chemoradiation (35 radiation treatments and weekly Cisplatin). During treatment, they saw another lump at the tail of my parotid gland so used a very high dose of radiation to the area. Overall, I recovered fairly quickly from the treatments other than pain from my shoulder and residual pain around my right jaw where the high dose of radiation was supplied. My 6-month post-treatment scan was clear, although the lump on my parotid gland is still present but not active cancer according to the PET scan. I would be happy to provide more info on my experience or thoughts on treatment options and I would welcome any insights from others who had a nerve graft to their trapezius muscle or very high doses of radiation to the jaw area with residual effects. My best wishes go to all of you as you continue your fight and I look forward to contributing to the forum.
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. Checking in March 11, 2017. Five years Out Just checking in...FEb 2017 got my CT scan and all is good. I am feeling good and am happy. Had to start on thyroid medication because of fatigue and hyper thyroidism, but now seem to have that under control and feel good.
CSmiley (Chris) Tucson, AZ enrolled April 30,2017 Diagnosed 3 February, 2017 w/ Stage III SCC (moderately differentiated) BOT (HPV-) Pre Surgery Staging - T1N1M0. One tumor, BOT, left side/center, 2 cm in diameter. Initially... one lymph node found, region III/IV, 2 cm, & necrotic. Surgery completed on April 12, 2017: radical, bilateral neck dissection and partial glossectomy. Post op pathology report indicates negative (good) margines from the tumor removal. 84 lymph nodes removed, 3 tested positive (left side) for SCC (no extranodal extension). Post Surgery Staging - Stage IVa (T1N2bM0). Follow-up treatment (begins 15 May, 2017). Chemotherapy (Cisplatin) 6 treatments (once a week for 6 weeks). Radiation, 30 treatments (5 treatments a week for 6 weeks).
So far, lymphedema is really bad. Tongue has healed well, but I have lost the ability to enunciate my words and eat without biting myself and/or loosing my food within my mouth.I am active duty military (17 years) (United States Air Force). I'm more than happy to share with others my experience.
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
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still in pretty good shape. sore throat and trouble swallowing. had throat stretched a month ago but no help. another throat procedure in october,hpoe this helps. will be 78 in feburary and still able to ride horseback daily and go on my colorado elk hunts in the fall. i will admit sleeping on the ground is getting harder.
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Checking in October 2017
This week will be 6 years since I learned I had stage III base of tongue with mets to a lymph node.
Five years out I did have to go on a feeding tube, but I am doing what I want. On good days I get up and I go and do, on bad days I listen to my body and try to take care of it.
I have no complaints and I am thankful for every day I get. I will always "whisper" prayers for all on this site and always before I hit the sbumit button...so if you are reading this, a prayer was whispered for you!!
Tim6003
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WMC [Bill] Sorry, I don't get on here much now. I am still NED and just had my 4 year this Oct. At first they thought I was T4; N2c; M0 and the 3cm tumor was pressing on my vocal cord. Lungs are bad with COPD stage 3 so I had only one option. That was to remove my Larynx and breathe through a hole in my neck. Also, do a neck dissection on both sides level 2~5 to remove the lymph glands so If it came back [25% it could] the cancer could not go there. That was the best decision I made. Removed 86 total and was cut ear to ear. They put in a prosthesis so I could still talk.
I spend my days on a support group for Laryngectomies. I have been able to find a way to do things we are told you can't do. My Doctor and SLP at Stanford Medical asked me to do some videos and put them on YouTube so they can use them. They show them to the ones that will have to lose their larynx to survive. It seems to give them hope and knowing that this is not a curse. It is a gift of life. Without it, you won't live. I now have 13 and still, need to do more. The videos have now been seen in 106 Countries. I was given a second chance on life. I guess this might be the reason, to help others learn to live with this major change. You should have seen them when they saw me play the Harmonica, on my neck. Now I'm not that good as I have to breathe to play it and I had never played one before. It shows them that if you really want it, fight and never quit. It took 2 months just to whistle, and I was told: "you can't whistle". If I can talk and have no vocal cords, why can't I whistle? So I showed them I can. Most doctors and hospitals don't know how to treat us and even give oxygen to us.I have worked with my local hospital so they could develop a training program to treat us. They didn't know how to get oxygen to me and after a knee surgery they refused oxygen and said I didn't need it. My O2 dropped to 72% and was depriving oxygen to most parts of my body. So we worked together so the next time that won't happen.
I am sad to read all the names I knew, and have passed. I have lost 18 just this year of Laryngectomies.
So live life to the fullest every day, and may all your days be better than today. You are all in my thoughts and prayers.Bill Cross Oct 2, 2013
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Roll Call
Stage 1V tonsillar squamous cell carcinona, one lymph node. Diagnosed Jan 2016. Radiation twice a day (64 total) 2 Cisplatin. Lost 50 lbs. Had to have feeding tube for about one year. My thorat closed up from radiation and I have had multiple egd's with dialation. I still get them every 4 months or so to keep it open. I also have trouble opening my jaw. I can't eat a lot of the foods I used to love but I am grateful for what I am able to eat. Mostly soft foods with lots of water. Hopefully one day it will be back to normal.I All pet scans came back NED. I am thankful for every day I have with my family.
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Checking in...
Hi All! Sorry not on here much anymore. Wanted to let you know Kreg just met his 5 year mark this month and was told he is now considered cured! Life has been very good for us. We've done a great deal of riding the Harley this summer and when he's not riding, he's on the golf course! I wish you all the best!
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Checking in first time
Shirley from Hyannis, MA. Dx March 2016 salivary gland cancer. Parotid gland. Mucoepidermoid carcinoma. Intermediate grade. Had surgery March 2016 finished rads Aug 2016. Follow up care is MRI every six months. Ned so far. Surviving today. Hope for tomorrow.
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First Check in
April 2017 DX with stage 4 SSC base of tongue and one lymph node on both sides of my neck. Completed 7 weekly doses of Cisplatin along with 35 RADS. Treatment ended June 29 2017.
I had my 3 month check up in October with a CT and PET scan. Scans shawn no tumor/cancer, but one node was still enlarged. Went for needle biopsy, ended up getting a punch biopsy of said node. Came back as dead tissue, no cancer.
If there was a side effect from treatment, I got 'em all! I was on a feeding tube for about 4 months. It was removed a couple weeks ago. I am 4 1/2 months out from treatment and still struggle with tongue pain, painful swallowing, Pain all around my neck area. Stiffness, soreness. Sore jaws and only open about 1 inch. Ringing in my ears, Lhermittes Sign (This is a strange one. When I bend my neck down, I feel a shock sensation down my spine, legs and to my feet. ) Still hacking up phlemn. Ugh. The radaition also helped close up my left carotid artery. So now I have to have a stent put in. And the ENT DOC wants me to do hyperbaric chamber. Cant start that just yet. It'll have to wait until after stent surgery.
Otherwise, I am doing okay and just thankful to alive. I also have decided to retire from work and enjoy life without that stress. I am only 49 but this cancer adventure gave me a new perspective on life. We are currently in Tucson, Arizona but putting our house on the market and are moving to Northern Cali this weekend.
Keith
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Enrolling
Diane from Buffalo, NY. Had surgery for what was believed to be a polyp, but turned out to be an olfactory neuroblastoma in Sept 2014. Came back and resection was done in May 2016. Returned and resection done Aug 2017. Will begin IMRT on Dec 7th for 30 sessions.
Hoping and praying for positive results for myself and for all on this site
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2017 update
Very delighted to be able to update that I am still free and clear since the end of October 2009. Eight years since treatment, living with some side effects, but nothing that keeps me from living life! Best wishes for all who continue on this challenging journey. Good days and bad days, but so happy that I have days!
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Alive and Kick'in
I am checking in happily still alive and kick'in, and just happy to be here. I did have another war with the Beast last January when some tumors were discovered on the soft palate in my mouth. The tumors were removed, and the excavated spaces were filled in with flaps from the exterior lining of my stomach; which is pretty amazing. I am very active with family activities, as well as hiking, camping, canoeing, jog/walking, biking, and gym ratting. Life is so good, and I am oh so thankful. I have always appreciated life, but of course even more so now since having survived multiple wars with the Beast, as well as a number of additional recovery related, severe health challenges. To anyone who may read this who is dealing with the challenges of treatment and recovery, I heartily encourage you to hang in there during the darkest times, no matter how tough it may be, taking it one day, hour, minute, or second at a time, and you will get to experience the brightest times. Use your support systems to get you through, such as family, friends, support groups, and therapy; you are not alone. Always remember: recovery is a marathon, so pace yourself, and be very patient with the process. You Can Do This! Lastly, Keep It Mov''in Forward! I submit this with love to all.
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Jim
Jim passed away last night, December 29, from a new cancer obstructing his airway.
He broke medical records surviving 7.5 years after successful treatment of Stage IV hypopharyngeal cancer.
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Oh no. May Jim’s memory be aNoellesmom said:Jim
Jim passed away last night, December 29, from a new cancer obstructing his airway.
He broke medical records surviving 7.5 years after successful treatment of Stage IV hypopharyngeal cancer.
Oh no. May Jim’s memory be a blessing to you and your family.
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olfactory neuroblastomadfs56 said:Enrolling
Diane from Buffalo, NY. Had surgery for what was believed to be a polyp, but turned out to be an olfactory neuroblastoma in Sept 2014. Came back and resection was done in May 2016. Returned and resection done Aug 2017. Will begin IMRT on Dec 7th for 30 sessions.
Hoping and praying for positive results for myself and for all on this site
Hi Diane,
I was diagnosed with olfactory neuroblastoma in 1996 with mulitiple recurrences every 3 to 5 years. I have only had surgery, I'm curious if you have had radiation before or is this your first time? Did your doctor recommend IMRT before? How are you doing/feeling now?
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5 years clean
Hey there old friends,
Thought I'd check in and let you all know that I've had clean scans for the last 5 years! Pretty good for a guy with stage 4 NPC that had spread to so many bones. Got a 3 year old son that's a miracle because the radiologist zapped my groin many many times to get rid of all the bone mets there. Doc said no kids. Doc was wrong. Anyway, life is amazing and I haven't forgot the support and friendships here that got me through 3 tough years of treatment. You're always in my heart.
Cancer doesn't win.
Bob
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Congrats..adventurebob said:5 years clean
Hey there old friends,
Thought I'd check in and let you all know that I've had clean scans for the last 5 years! Pretty good for a guy with stage 4 NPC that had spread to so many bones. Got a 3 year old son that's a miracle because the radiologist zapped my groin many many times to get rid of all the bone mets there. Doc said no kids. Doc was wrong. Anyway, life is amazing and I haven't forgot the support and friendships here that got me through 3 tough years of treatment. You're always in my heart.
Cancer doesn't win.
Bob
And hoping for a long life ahead..
John0 -
Been off the grid.
Hi brothers and sisters, I've been off the grid for too long and thankful so many are doing well and hope I can be of help also. I am doing well but have two family members with issues concerning the "Beasts" at two other sites and that's where the energy has been directed lately. I wish you all health and peace. josh r.
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