ROLL CALL 2019 - SECOND UPDATE JUNE 17, 2019 CLOSED

 PLEASE READ

ROLL CALL 2019

Second UPDATE June 17, 2019 (Full moon tonight)

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.

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.

It is desirable to have a members supply their name, city, state and dx for their description.  These items will NOT BE A REQUIREMENT, but CivilMatt is asking you “why not include them?”

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.  Such as: I live down the road from the dog that is always barking and spinning in circles or I live east of Chicago or I have radiation¹ brain and I am not sure.  Something that CivilMatt can hang his hat on, please. Almost anything is better than “unknown”.

I will copy all of your information you provide into 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 and if I missed you, I am sorry. Note:  ALL edits will be corrected during the periodic UPDATES to Roll Call.

So far, this year there have been 39 existing members and 7 new enrollees for a total head count of 41 members to ROLL CALL 2019. 

I appreciate those members who participate, but wish more members would give us an update on how they are doing. I will even contemplate anonymous submittals about old timers, (how that would work I have not a clue, yet.  I know there are existing members out there but they choose not to update their current status (themselves).  If you have read many of their posts you would wonder (like I do) why they do not update their profile on here. Many of the earlier H&N members really poured their heart and soul into this forum (in years gone past) and that is why CivilMatt considers the Head and Neck forum to be the best on the CSN website, bar none!  You may know one of these  H&N members who have not checked in recently, if you do, please ask them to stop by the H&N forum and let us know how they are doing.  Now, I am going to bed, “good night all”.

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

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. 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.

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. Treatment 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. 1 st week in November. G.P. finally sent a referral letter to an ENT consultant 12^th Jan 2017. I got to see the consultant 28^th 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. 6^th March 2017 head & neck MRI scan; CT scans head, chest, abdomen & pelvis. 13^th 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, 1^st appointment 27^th March2017 with this consultant and biopsy arranged for 29^th April under a general anaesthetic. Results in for the biopsy 7^th 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 25^th April and treatment hopefully will start around the 15^th 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. Ive 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 pre treatment.  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 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 embol