ROLL CALL 2018 - Updated July 14, 2018

CivilMatt
CivilMatt Member Posts: 4,724 Member
edited July 2018 in Head and Neck Cancer #1

ROLL CALL 2018

1st Update July 14, 2018

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 2017 we had 253 members who enrolled since 2008 and we had 75 members checking in or enrolling in 2017.  So far, as of this update, there are 29 members checking in and 12 of those members are new to the Roll Call 2018.  Fantastic!

I appreciate those members who participate, but wish more members would give us an update on how they are doing. I am thinking about adding “by word of mouth” section to update those H&N members I know are out there but choose not to update their current status (themselves).  If you have read many of their posts you would wonder why they do not update their profile on here too. Many of the earlier H&N members really poured their heart and soul into this forum, in years gone past.  AND THAT IS WHY WE ARE THE BEST FORUM OUT THERE, BAR NONE!!!  You may know one of the H&N members who I am talking about, but I will give you a hint.  She is the chief reason this forum has a Superthread.  Now, Matt will climb down from his soap box and go eat dinner.

If anyone has information about a member, let me know and I will update their status. Katie (katenorwood) and Candi (hwt) come to mind about two (very special) missing members.

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. I print everything you write (including errors) with minimum edits.

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.

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.  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.

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.

armana Arman Aransen. 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, 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

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

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 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.

CatPerson (name,

Comments

  • donfoo
    donfoo Member Posts: 1,773 Member
    #2
    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!

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    donfoo said:

    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!

    5 years NED - Cured

    Don,

    You are a wise sage.

    Matt

  • yensid683
    yensid683 Member Posts: 349
    #4
    6 years post treatment

    Last rad 7/5/12, last ENT visit 7/12/17, NED and 'cured' according to the chancre mechanics....

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #5
    Checking In

    Last rad in April of 2012.  Doctor won't release me until 15 years have passed.  Mucoepidermoid Carcinoma acts different than SCC.  Side effects not untolerable.  They include; scar tissue in throat where food gets stuck, muscle spasms in neck from radical dissection, and still some nerve pain but very minor now.  

    Very lucky to be able to continue posting on this thread. 

  • Fritz
    Fritz Member Posts: 106
    #6
    2 years post treatment

    Just Checking in. Stage IVa Tonsil (spread into nearby node, soft palate and tongue). 2 years post treatment (7/15/16 last treatment). Last ENT on 6/13/18 and "all clear" given. Hope the best for all!!

    Freddie

  • Guzzle
    Guzzle Member Posts: 710
    #7
    donfoo said:

    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!

    Lovely news Don YNWA  

    Lovely news Don YNWA  

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #8
    Checking in

    My husband is doing well.  He had surgery to remove 6 mets in his lungs at MD Anderson in Nov. 2017.  Surgery went well, and scans in April were clear.  We actually go to Houston tomorrow for more scans. Hopefully all will be clear.  God Bless you all.

     

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    edited August 2018 #9
    Newbie's

    My husband starts treatment August 16th.  I figure we'll be on this site for awhile.  We get encouragement from the cancer warriors who've gone before us.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Blast From the Past..

    Doing well.., ooing on 10 years from the STGIII SCC Tonsils Dx on January 2, 2009..

    Shelley, myself and our two young labs just got back from visiting Ingrid K in the Chicago area. Our two chocolate labs have both passed from unfortunately, cancer this past year or so.., gone, never forgotten. Also, BTW.., Ingrid lost her husband Ted to cancer a short time ago, as well as Barney, her beautiful Golden Retriever. I had done a portrait of Barney for Ingrid that I took with us for her also.

    We were up visiting Ingrid as I also had an art piece that was accpted in an exhibit downtown Chicago. Those that remember me, know that I'm into photography, and from those reference photos, I do colored pencil drawings.

    One was accepted into the Colored Pencil Society of America - 26th International Exhibit at the Bridgeport Art Center - Chicago.

    Anyways, all is well.., and doing great..

    Best always, John

  • RushFan
    RushFan Member Posts: 224
    #11
    It's been a long time...

    Since I've checked in. Diagnosed Jan. 2010 HPV+ N2b MO, unknown primary. Just a little over eight years post treatment (33 rads, 7 once weekly cisplatin) and I'm doing great.  Dry mouth at night is helped greatly by Xlimelts. Have some tinitus, stiff neck and jaw issues. Still difficult to eat lean meats, but all is well as I could stand to lose 15 pounds or so.

    I was recently released from serving as Bishop of our LDS ward. That, along with working 50+ hours a week has kept me very busy! Our oldest daugter will be attending UT Austin in the fall, the twins will be sophomore's in highschool and the little guy will be in 6th grade. 

    I have always been grateful for those contributing on this board, the support and advice are terrific. 

    Best regards to all, Chuck 

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