ROLLCALL 2016 - UPDATED DECEMBER 10, 2016 CLOSED

CivilMatt
CivilMatt Member Posts: 4,724 Member
edited January 2017 in Head and Neck Cancer #1

ROLL CALL 2016

Updated December 10, 2016

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. 

 

With the Fifth (and final) update of ROLL CALL 2016 we have had (as of December 10, 2016) 211 members who enrolled since 2008.  There has been 77 members either checking in or enrolled for 2016. Which leaves many MIA’s for this year.  Well, there is always next year.  Maybe, reaching the 100 number is down the road.  Remember, H&N members need to be counted (says me).

 

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.

 

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.  Still here and still alive, came down with some Pneumonia again but that is due to not being able to swallow. Feeling like crap but that is all part of live.

 

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!!

 

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.

 

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

 

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Comments

  • Grandmax4
    Grandmax4 Member Posts: 723
    #2
    2016

    Checking in~~~5 years, 1 month, 8days..cancer free, loving life~~~declared  cured, I'm always afraid to say that, there is, and always will be, the little tinge of fear. Merry Christmas everyone and  may 2017 be a fabulous New Year!

  • yensid683
    yensid683 Member Posts: 349
    #3
    Checking in too

    4 years, 5 months, 7 days since the end of treatments, check ups continue to be good, just a short amount of time until the magic 5 year pin!

  • Mgbfoster
    Mgbfoster Member Posts: 18
    edited December 2016 #4
    Glad to be here!

    Southern Illinois (Bob) Diagnosed in May of 2016. T2 tumor at BOT. Tumor removed in August 2016. Took 30 radiation treatments. Rang the bell on October 18, 2016. I am very fortunate in that my wife is an 11 year survivor of head and neck cancer as well as breast cancer. She is a warrior. She coached me every step of the way. This certainly has been a life changing event. I thank God every day! This site is a wonderful source of information and support. Thank you all!

  • KB56
    KB56 Member Posts: 318 Member
    #5
    checking in Dec 2016

    It's hard to believe it's already been 3.5 years since I finished treatment and so far so good.  The side effects are now minimal (but still a few but nothing I can't live with and enjoying life to the fullest).    Saliva has recovered for the most part which was one of the biggest issues at first but the human body is a pretty amazing creation.  Once you stop beating up on it with radiation and chemo, it slowly but surely, tries to get back to "normal".    The whole experience was a life chaning one for sure but i hope i am a better person than i was before all this started.  I try and be more patient, more tolerant of others and try not to spend time thinking about things that are out of my control (like a recurrance).      The folks on this site are wonderful people and always supportive, always willing to listen and try to help guide someone through whatever they happen to be going through at the time.         life is truly special.

  • tomb247
    tomb247 Member Posts: 54
    #6
    Enrolled July 23, 2015,

    Enrolled July 23, 2015, Diagnosed January 2015, SCC Tonsil and Base Tounge. Stage3 N 0 HPV+.  6 Weeks IMRT 7 Fields.  1 mo CT Scan Normal.  4 months post reatment Clear with high confidence of No Evidence Disease.  FIngers Crossed.  UPDATE Nov 2015 - NED after 6 months.  (PET Scan in Feb or Mar 2016 ar one year post treatment).    Taste is still off. Most times sense sweet, spicey and salty but not much else. Lymphedema in neck and vocal chords. Still some swallowing issues but can eat most items. Feeling pretty good and working full time although still a bit fatigued after long day or week. Saliva is slow slow slow to come back to whatever the new normal will be. Dentist every 3 months and Flouride Trays every day forever to try and save teeth which were all normal prior to treatments. Hoping that it helps.    Actually pretty happy right now. God, friends and family have been supportive and My faith has really grown in last few months. Hope and Pray you all are well, healing and peaceful. Take care.  Checking in June 26, 2016, Treatment finished March 3rd 2015. 1 year CT scan in April and PE by ENT and Onc Doc and NED. Now 15 months post and will visit ENT in a few months. Onc Doc will see me at 2 year mark for scan. Saliva is better about half what it used to be. Taste still off a bit but overall just okay. Breathing In, Breathing Our and Moving On. Take care and Peace to all of you.

    December 2016. 18 month head and chest CT's done and NED. Trying to deal with new normals as far as saliva, taste, neck spasms, jaw pain and lymphodema. Overall doing well. Just need to BIBOMO (See above). Bless you all and check in again at 2 years. 

  • LeoS2323
    LeoS2323 Member Posts: 160
    edited December 2016 #7
    Checking In

    Now 4 years 9 months NED - 3 months to go until 5 years officially cured, doing really well. Appreciate every day on this earth - the kids are 6 and 8 years old now. I was 33 and they were just 9 months and 3 years old when my cancer arrived, which was scary but they kept me strong. They have changed and grown up so much, I treasure every day with them and am immensely greateful that I can be here to look after them. God bless all the wonderful and brave folks here on CSN, it reminds me that there are still a lot of good people in the world.

  • Sandraw
    Sandraw Member Posts: 40
    #8
    NED 12/9/2016

    Hello everyone. I am still seeing improvement post NPC Stage 3 treatment that was diagnosed December 2015, treated from Feb thru June 2016 with Radiation and Chemo. Had PET/CT 12/9/2016 thank God, my Doc's and my lucky stars NED!! Had appt. scheduled from awhile ago with ENT for scope 12/14/2016, says looks good except vocal cords are still swollen. Still get a pain on R side of tongue it comes and goes, Rad Onc attributes to metal crown reflection during radiation caused deep burn, saliva slow to return, panick without my bottle of water. Required bilateral cataract surgery from radiation and steroid induced cataracts, I can see pretty well now! On short term disability, applied for SSDI in October with compassionate allowance requested, no news yet. I have difficulty speaking very long and am required to talk alot at work and still have fatigue, neuropathy,  none the less going back to work if no decision soon. Getting port out 12/27/2016!  Wishing everyone a joyous Holiday Season and Healthier, Prosperous New Year!. 

  • Rochester1950
    Rochester1950 Member Posts: 6
    edited December 2016 #9
    Roll Call December 2016

    Merry Christmas & happy HEALTHY new year to all!  Diagnosed with esthesioneuroblastoma, stage B last December.  After 5 weeks of radiation therapy, lost smell/taste which has not returned.  Now have monthly ENT checkups & annual PET scans.  Feeling good & thankful to be here.  Grateful for all the support on this website!

  • Kyskirt
    Kyskirt Member Posts: 6
    edited December 2016 #10
    Check in

    3 yrs NED - Stage III larynx (rare papillary) SCC.  Was told Day before Thanksgiving by Dr, I'm no longer in contention for reoccurrence.  WOO HOO!  Only current issues involve radiation induced muscle spasms (treated with Botox) as well nerve damage issues.  Swallow comes and goes in strength, I adjust as needed.  My goal was to save my voice, I did, it isn't strong or loud but I function.  Thankful to be here and able to enjoy life with a few limitations.  

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Still alive in 2016 today and 2017 tomorrow

     

    Oh oh last day to check in, Tim Hondo or whatever you want to call me. I am still here but not doing the best because of long term side effects of radiation treatment, but I am still by God grace still alive.  

     

    Tim Hondo

     

  • bild
    bild Member Posts: 3
    edited January 2017 #12
    Enroll

    I'm Bill in Las Vegas, Nv.  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!

     

     

  • jkinobay
    jkinobay Member Posts: 298 Member
    edited January 2017 #13
    Jkinobay here..............almost 10 years and doing great

    Still NED.  May, 2017 will be 10 years post diagnosis.  Have come to really appreciate my "NEW NORMAL"..................and all that comes with it.  Can't say enough good things about the great, caring folks here at the CSN/HNC Board and how tremendous a resource they have been to so many.  Keep on a keep'in on.  Take care.  JK

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