ROLL CALL 2020 - CLOSED!, NO SUBMIT! NEW ROLL CALL 2021 SOON!
PLEASE READ
ROLL CALL 2020
Second UPDATE: September 24, 2020
(Side note: for those of you interested in some “Matt junk” my Dad would have been 99 years old today if he was still alive. Also, there was a memorial service for my former boss today. The job was at an engineering firm where I was one of the staff engineers, hence my name on the CSN website of CivilMatt). That did not hurt too much.
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. HAWVET ran a tight ship!
ROLL CALL Guidelines**:
A H&N member will be enrolled in the current and active Roll Call on the date they leave a post to this thread or if they contact me (CivilMatt) and asked to be included in the Roll Call. I have taken this step to increase the number of H&N member participants in the ROLL CALL. I need to do something to increase our H&N member participation or I won’t get any benefits.
It is desirable to have all members supply their name, city, state and dx for their description. These items will NOT BE A REQUIREMENT. I am mostly satisfied with the responses I get to my requests. I would ask you to be creative on your location if you prefer to not give the city and or state in which you live. Make it something other members can identify with when reading your bio. Almost anything is better than having me write “unknown city, unknown state or unknown dx”. I got one location recently of a RC member since 2016, identified their location as the Pacific Northwest and that is a step in the right direction and far better than getting branded with the dreaded “unknown” nomenclature.After I have the information you have provided, I will copy said information to the current ROLL CALL. You simply sit back, relax and enjoy.
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 about the glitches and where they are located and if I missed you, I am sorry. Note: ALL edits will be corrected during the periodic UPDATES to Roll Call.
The current RC count for 2020 is 7 existing members and 6 new members for a combined total head count of 13 members to ROLL CALL 2020. For those who took the time to join or check-in CivilMatt thanks you very much.
A new spin on the RC check-in are (the very welcome)double or even triple “ check-in” posts per RC year. I am trying to figure out how I want to include this in the RC stats, for now I simply include them. After all, we only go-a-round once and I think you should be heard!
I appreciate those members who participate in the RC and this is another reason why CivilMatt considers the Head and Neck forum to be the best on the CSN website, bar none!
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!
- **Guideline: NOUN guidelines (plural noun) a general rule, principle, or piece of advice.
H&N MEMBERS
aak16 Ashley from Erie, PA, Enrolled February 12, 2018, Ashley from Erie, PA here. 30 years old. Diagnosed with SCC of the vocal cords in June 2017 after laser removal of some of the growths. Completed 29 radiation treatments in July-August 2017. Radiation kicked my butt and while I had the summer off because I'm a teacher, I took 5 weeks off of work once school started at the end of August to recover. My 3-month post-treatment CT scan was clear. Right now I'm 5+ months out and my problem is that my voice is very weak because my vocal cords aren't vibrating. A laryngologist told me there's no fix for it but we should wait until the one year mark to see if some fo the function returns after my throat has had more time to heal.
ADBWanderer Barry from Flagstaff, Arizona, Esthesioneuroblastoma Polyp surgery June 2018, dx June, surgery August 2018 in Tucson AZ Currently getting cisplatin every third week and radiation M-F for 6 weeks. Doing pretty well with fatigue as the main symptom. I am the caregiver.
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. Treatments 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.
Alpinelife no name, city or state. Enrolled February 4, 2019 I’m still here. I began my cancer journey late 2013 with Stage 0 tongue cancer. Have had two recurrences, the last in Oct 2017 as stage 4 tongue cancer. Treatments ended in Feb 2018, since then have been NED. A tough journey, but life remains good.
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. 1st 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. Checking in January 5, 2018, All Good up to now 6 months out of treatment for BOT SCC HPV16+ 3 Cisplatin and 35 rads. Eating is normal taste is 100% back Saliva is about 90% back. No pain slight amount of mucus still nothing to bother about. Running 60 to 70 miles a week completed a marathon in November in 3:30 (2nd overall), half marathon next Saturday & another marathon end of March. I’ve nearly managed to get the weight off that I put on for treatment!! Checking in February 4, 2018, All Good 32 weeks out of treatment for BOT. 3 Cisplatin and 35 lots of radiation. No issues everything back to normal apart from the slight loss of hearing due to Cisplatin. Running 80 plus miles a week and will race my 2nd marathon since treatment finished in another 6 weeks’ time I'm actually quicker now than I was pretreatment. Checking in June 14, 2019, still here nearly 2 years out of treatment.
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 treatments. First treatment 11/15/16. All treatment
Comments
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STATUS OF ROLL CALL 2020
My Dear H&N members,
This Roll Call 2020 - SECOND UPDATE is trying to kick my behind but I am fighting back andI hope to have it all fixed up and runnning very soon. I have been in contact with our CSN representative and they have the IT team working on my problem. Which is the site keeps blocking me from up loading the new ROLL CALL,I thought maybe my computer was getting a little long-in-the-tooth and maybe it was time for a new machine or maybe something isn't turned on correctly in my computer settings. It did allow me to upload the current introductory page to the ROLL CALL - SECOND UPDATE, September 24, 2020.
Anyway, Please go ahead and check-in or Enroll. I promise you it won't hurt as much as a radiation sore throat or be as uncomfortable or scary as a radiation mask. AND you will make CivilMatt's day.
See you around the H&N forum
Matt
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Update
Hi CivilMatt!
Thanks for doing these Roll Calls! I'm Mary, I had Mucoepidermoid Carcinoma. On a good note, I had to Google how to spell it.
I'm from Las Vegas, NV. I was diagnosed in April of 2017, had surgery to remove the cancer, and no other form of treatment. It was caught early, and I've been cancer free ever since. I still have my super tiny oral nasal fistula. Other than having a dehydrated mouth (due to all the salivary glands being removed from the roof of my mouth), I'm great.
If you are reading this, then welcome and please know that you too can get through this. We're here to support you.
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H&N members,
H&N members,
Update on status of the current ROLL CALL 2020. I have got the members up through the letter "E" uploaded and now at 3:32pm PST on the west coast and I am being blocked again, but I will get this finished soon.
Thank you Mom68 for your input, I included your check in with the SECOND UPDATE. Lucky you.
All members, please feel free to check in or enroll, now (today).
Matt
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upload complete!
H&N Members,
Well, it is very close to 100% uploaded. Only one name had to be removed (temporarily) and I do not know why they were such a “roll call blocker”, but they were. I was surprised by which member it was. You just never know about someone. Anyway, I am heading outside for one of the best and last sunny days in the Willamette Valley in Oregon before it rains to get some projects finished and cleanup around the house.
Now do your part to make my life happy and check-in or enroll. Remember, I had cancer just like many of you and I would think my request for some help on the ROLL CALL participation would be answered.
Thanks,
Matt
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checking in
Hi Matt, Thanks for keeping the roll call going. Not much change for me, updated below
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! Checking in July 2017 - 4 years post June 2017. Fibrosis in the neck still a pain in the neck. Otherwise, still doing great and living large every day! Bought a motorhome and taking some trips. Checking in July 16, 2018 (5 years NED – cured!) Passed the 5 years post early June 2018. NED so all good. New normal = old normal except for one long term side effect. That is, tightness along the neck muscle from ear, through jaw, to shoulder on side where radiated. Regular neck stretching and jawwing (big yawns) settles things down. Enjoy every single day, never take today or tomorrow for granted. Life is great! Checking in February 24, 2019 Passed 5 years last summer. Nothing has changed except older. Very thankful that I'm living well, enjoying life each day, no meds, and the only long term side effect is the fibrosis in the neck and jaw area. Even thyroid seems to be holding up.
Checking in Oct 2020. Really no change since checking in last year. Live is good and enjoy every day.
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First status check-in
Bret, central Mississippi, Sept 2016, SCC HPV+, 4b (at the time). 35 radiation blasts, 5 of 7 Cisplatin doses taken, Hederman Cancer Center, Jackson, MS. PETs clear - NED - 4-year PET in ten days. It took the better part of two years for me to recover from large weight loss and general atrophy despite "following orders" to eat and exercise. I have returned to being fat (thank you, God) and can and do walk 3 miles at a time at a good pace (thank you, God) and could go more if I could find the time. There are some lingering symptoms, but nothing that interferes much with the enjoyment of life.
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Matt
Thank you for keeping the Roll Call going. Hope the reason for the blocker was not my changing my name, here, from Dave K to Logan 51, so:
Logan 51- Quad cities, Illinois, Joined and checked in on March 8, 2019 Hello. I'm new, but old. Will be 10 years since last Rad. session come the 1st week in April for stage-3 NPC w/unknown Primary. Noticed the two lymph nodes protruding from left side of neck a couple weeks before I turned 54 in 2008...then the diagnosis w/scans and wait...then the concurrent Cisplatin Chemo and Rads in 20 places/session x31, followed by only 5 places the last 4 sessions...And just turned 64 late last November without any return bouts with C! Forum helped me a lot way back when, with Delnative's advice on mouth and teeth issues, for instance, and Dawn when she was active. So, knowing how this Roll Call works, though I be old, consider me enrollled as of now.
And, for everyone in difficult time of tx, and wondering if you'll make it; or, to those just diagnosed- Believe you can and will survive. There are many who have survived H&N years longer than I have, and so will you...Believe. Checking in December 12, 2019, Aspiration, due to Rad damage at base of throat and scar tissue around esophagus aperture and failed swallowing test, made installation of a permanent G-tube necessary on 8/6/19- 10+ years after my last Rad session. ENT Dr. scoped my thoat and said, "I see scar tissue everywhere." Got 68Gys at base of throat and 60 up to chin. Just turned 65, and never to use my teeth to eat again, or drink using the mouth.
Now 14 months being FT-dependent and 11-1/2 years since last Rad session as of 10/2020, life is still good.
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2nd Check-In
Enrolled December 19, 2019, Boise, Idaho, Diagnosed NPC (Nasopharyngeal Cancer) December 2018, after it had travelled to neck, and had the lump removed. Finished Radiation, Cisplatin in March 2019, finished 5 FU in June, 2019. First PET was clear - life is good.
Finished treatment 16 months ago, all tests to date have been good. Next test in 2 weeks. Taste has come back good, neck a little stiff, and I still have Neuropathy (numbness) in my hands, forearms and bottoms of my feet. But, overall energy has come back and life is currently very good!
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Checking inmotorcycleguy said:2nd Check-In
Enrolled December 19, 2019, Boise, Idaho, Diagnosed NPC (Nasopharyngeal Cancer) December 2018, after it had travelled to neck, and had the lump removed. Finished Radiation, Cisplatin in March 2019, finished 5 FU in June, 2019. First PET was clear - life is good.
Finished treatment 16 months ago, all tests to date have been good. Next test in 2 weeks. Taste has come back good, neck a little stiff, and I still have Neuropathy (numbness) in my hands, forearms and bottoms of my feet. But, overall energy has come back and life is currently very good!
Had lump come up just under jaw right side. Went to ENT diagnosed BOT cancer with fine needle. Had neck dissection with many nodes removed both sides with several positive right side with no ECS, left side clear. TORS surgery to remove tumor and tonsils. 33 Rads tx finished tx on 12-10-18
Cat scan on 3-5-19 all clear. Returned back to work on 3-25-19. scoped every 3 months since.
Have 80% taste back,dry mouth, overall doing good and thankful for this site that helped me get through it and life is good for me at the current time. currently near 22 months since last tx.
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Checking In 2020
Hello all and God bless.
Number 1 thing I want to do is acknowledge and thank Matt for doing the Roll Call and keeping it going and a Hats off and a Hearty Salute in Honor and Memory of HAWVET who started it.
wbcgaruss-Name is Russell and location is Washington Boro, PA
I had throat cancer in 2012-2013 and received 35 rads and numerous chemos. Clear CT Scans and PET Scans pronounced me NED. Five years out I get a sore spot on my tongue and biopsy proved to be cancer so surgery was performed and clear margins achieved. All good. A year and a half later I get a sore area on the left side of my neck. CT Scan and biopsy prove cancer again. One lymph node but not encapsulated and spread. THE local ENT did not want to touch it because of previous radiation so I was sent to Penn State Milton Hershey Teaching Hospital for surgery. I had surgery and it was successful but I had a number of complications starting with a damaged Khyle Valve and-rather than getting released in a couple of days as was thought I ended up spending 36 days there and getting 6 operations finally being released to a rehab nursing home for 10 days. I had follow up rads around the area so it is my second time to have rads around the H & N area. I am doing well now but need a tooth pulled so I am in the process of getting HBOT treatments which I am into my fourth week which will be 20 treatments. They want me to have 30 and pull the tooth and 10 treatments afterward. I must say I have had 2 major cancers and they do add up on you. No matter enjoying life each day and thanking God for getting me through it all and providing so many dedicated doctors, nurses, rehab people, and many too numerous to remember them all. I was just an avid reader till I got my second cancer then I joined CSN. What a great group of people taking care of each other. Greatest wishes to all-Take Care-God Bless-Russ
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Roll Call
Just adding myself to the roll call. Don from Bella Vista, Ark. Diagnosed with stg3 tonsil that went into left lymph today. So hre I am for your roll call. Awaiting biopsy to determine if HPV related. Fingers crossed. Still investigating and figruing out this roll call, pages, and discussions. Not real happy right now. (But not depressed or nothing ..... just bummed)
Thank youDon aka Beagledad
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Roll Call
My husband is 10 weeks post treatment for HPV SCC base of tongue with 35 rads/7 cisplatin. PET/MRI in 2 or 3 weeks though CTScan 2 weeks ago looked good. Still alot of pain at tumor site but eats most things except bread/starchy stuff with help of magic mouthwash and aec/cod. Not much taste and the mouthwash kills that anyway. Maintaining weight and starting to exercise more. Sleeping better. Bloodclot from PICC line is gone! Treated 3 or 4 different meds for thrush to no improvement to pain or whiteness of tongue. Doc says he's an outlier for pain and will have to look at hyberbaric or something for possible ulcer but nobody will act until PET so waiting for that. Getting therapy/wearing mask for lyphedema. Trying to gin up the enthusiasm to find work when it would be so difficult to interview. But we laugh alot and know God is in it with us.
Prayers for all of you,
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2020 Update
Thanks CivilMatt for doing all the work for the roll call. Had Mucoepidermoid Carcinoma in 2011 on the base of my tongue. Surgery to remove it, radical r-neck dissection, and lower dose rads to finish it up. So far so good. Small complaints that aren't worth mentioning.
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Roll Call Check-in October 2020
Mikemetz (Mike), Decatur, Georgia, joined forum November 2011, enrolled January 11, 2012. DX’d Mucoepidermoid in February 2009, Checking in on January 12, 2020. Had seriopus problems with ORN, leading to a jaw reseciton in 2014, and a lot of other problems. I had a PEG tube placed in April of 2019 to help get in more calories and reduce the risk of aspiration pneumonia (which I had in January of 2019). The tube is doing its job, allowing me to gain back a few pounds, and feel a whole lot better in general. The doc first said the tube was temporary, but I now know I'll be keeping it for life. In late 2019 I finished a book about my time as a patient being treated, and then as a cancer survivor with some serious side effects for 11+ years. The book will be out in May of 2020. My best to all on CSN. Checking in October 2020--Coping well with the feeding tube and staying safe and healthy during the COVID pandemic. The book came out in May and can be found on Amazon and Barnes & Noble. Search for "Two journeys in cancer world." All royalties will be donated to the Head and Neck Cancer Alliance. Mike
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Roll Call October 2020
Hi all, Sonja from Wisconsin. My diagnosis and treatment for scc of the jawbone was in 2014. Some minor permanent side effects but all manageable. Thank you Matt for continuing the Roll Call. Your humor and advice from all got me thru treatment. Stay safe everyone!
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Checking inCivilMatt said:H&N forum is where we are.
Hey H&N Members,
This is a very good response to my request to have öld timers” and “new enrollees” check in or get started with the Roll Call.
Thanks,
Matt
Hi:
Wishing everyone a wonderful 2021! I'm a sixteen year NPC survisor still spending most of my money on dental work. Despite the pandemic, I am fortunate that I get to enjoy a new granddaughter who was born in June.
Wishing everyone a safe and healthy new year!
Christmas
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