ROLL CALL 2019 - CLOSED, CLOSED, CLOSED!!!

PLEASE READ

ROLL CALL 2019

Fourth UPDATE November 26,  2019

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. Once you look, I include you.

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 got one location recently of a RC member since 2016, identified their location as the Pacific Northwest and that is a step ahead of  “ location 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 58 existing members and 11 new enrollees for a total head count of 69 members to ROLL CALL 2019. 

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!  Now back to my Christmas project. It should be very cool when finished and on display.  Take care everyone and  Merry Christmas!

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.

1. **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. 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) (content removed by CSN) 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.

armana Arman (content removed by CSN). DFW metro Texas, Enrolled January 6, 2018,  3 years 2 months post treatment for stage III HPV+ SCC in tonsil with one lymp node involvement. Treatment included surgery to get the tonsil out followed by 6 1/2 weeks of radiation but no chemo. I am doing great with the exception of some dry mouth back to normal.

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) Buffalo, New York. 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. Checking in, February 8 & 18, 2019. We are still NED 3 1/2 years post stage 4 NPC, (yay!) but have had significant complications from the radiation. The latest is bilateral vocal cord paralysis which is affecting breathing, swallowing and speech. A tracheostomy seems to be in our very near future. Nonetheless we still consider every day to be “icing on the cake” and just celebrated our 34th wedding anniversary.

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 (Bill) (content removed by CSN), MS,  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! Checking in March 2, 2019.  March 1, 2019. 3-year 4 month scan was NED and all is otherwise well. Thanks for everyone’s support.

big G no name, city or state Enrolled February 4, 2019 Diagnosed in Aug 2018 SCC bot- I had neck dissection, Tors surgery,33 IMRT tx.  I couldn't eat solids for 2 weeks after Tors surgery, took the rad  tx fairly well except the normal lost taste buds, dry mouth e tc. I now have about 80% taste buds back still have dry mouth and turkey neck but getting better. I have first C-T scan of the head, neck, and chest on 3-5-19. I can't say enough good things about this forum from the encouragement to the knowledge that I know helped me through my treatments. There are too many to name but you know who you are. THANK YOU!

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

Billbo Baggins Tom from Friendship, Maine. Enrolled February 13, 2018. I have stage IV hvp+ I’m done with treatments 35 radiation and 3 chemo. Wasn’t told about depression until it hit me last week so I called the nurse and got on some medication for it. Now I’m getting counseling and this is part of my healing process from the depression. I will share my story soon. 

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.

big G (Gary) (content removed by CSN), South Carolina Enrolled Diagnosed in Aug 2018 SCC bot- I had neck dissection,Tors surgery,33 IMRT tx.  I couldn't eat solids for 2 weeks after Tors surgery,took the rad  tx fairly well except the normal lost taste buds, dry mouth,etc. I now have about 80% taste buds back still have dry mouth and turkey neck but getting better. I have first C-T scan of the head, neck, and chest on 3-5-19. I can't say enough good things about this forum from the encouragement to the knowledge that I know helped me through my treatments. There are too many to name but you know who you are. THANK YOU!

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.  Checking in October 28, 2017   d husky voice now means I can sing as good as Lee Marvin ("I was Born Under a Wandering Star")      

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