CivilMatt Member Posts: 4,698 Member
edited June 2017 in Head and Neck Cancer #1


3rd Updated April 21, 2017

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 2016 we had 221 members who enrolled since 2008.  There were 83 members either checking in or enrolled for 2016.  Which leaves me shy of the desired 100, but still a healthy number.  Come on H&N members, make HAWVET proud.  I would like to get  at least 100 check ins or new enrollments for 2017.  H&N members need to be counted.

I know many H&N members log on as I click their pictures and see their last date on line.  I would be happy to include you in 2017.  I can keep it simple, just touch base.

So far for 2017, we have 22 members checking in or enrolled.

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. Pretty please.



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.

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.

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

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.

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



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

     Enrolled July 23, 2015, Diagnosed January 2015, SCC Tonsil and Base Tounge. Stage3 N 0 M0 HPV16+.  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. Breathing In, Breathing Our and Moving On. Take care and Peace to all of you.  Checking in Dec 13,2016.  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. UPDATE 04/22/2017 - 2 Year scans were denied by Insurance but will have in 6 months. ENT did thourough exam and scope and sees nothing of concern. Fingerers crossed still NED at 2 years. Peace to all of you.


  • SuzJ
    SuzJ Member Posts: 426 Member
    February? March 2017

    I found a swelling (Isn't that how all our stories start?)

    I thought I had an ear infection, Cancer doesn't happen to me, I am invincible, right?


    Wrong. It can happen to anyone. Its base of tongue SCC, and I'm doing 33 rads, and 3 rounds of chemo, altho I'm not sure who will win on chemo

  • Kapital
    Kapital Member Posts: 52 Member
    edited April 2017 #4
    August 2015

    Joined August 2015.Los Angeles, California. Husband diagnosed, age 60, with with stage IV tonsil cancer, HPV and P16+.  First noticed a lump in left neck Sept 2015. Needle aspiration negative, told it was a Branchial Cleft Cyst. Waited until Nov to have it removed. Surgeon said it was not CA post op. Path report came back SCC, CT1N2B, P16+ with unknown primary. Laryngoscopy with tonisillectomy and multiple bx done Dec 2015, showing left tonsil CA. Treatment started Jan 2016 = 3 rounds of Carboplatin with 6 1/2 weeks of IMRT radiation (6600 cGy). No PEG, lost 75 lbs, regained 20lb at 2 years out. Happy to be NED at 2 year mark - March 2017. Saliva at about 50% and taste 60%, carefull with swallowing - with lots of moisture/liquids available, able to eat pretty much anything . Otherwise, doing amazingly well, living life to the fullest, taking each day as the gift that it is. 

  • sherylcv13
    sherylcv13 Member Posts: 23
    edited April 2017 #5
    April 2017

    My husband was diagnosed around Labor Day 2016 with cancer of the oral tongue (lesion discovered by our dentist when he was having a new partial plate made).  Surgery was scheduled which would have been followed by chemo/rads.  The pre-op PET scan showed another tumor on the base of his tongue.  This changed treatment to chemo/rads first and, hopefully, no surgery.  He did 7 chemo and 35 rads from Oct 3 - Nov 18, 2016.  In January 2017 the radiation sores under his tongue necrotized and we were referred back to the maxilofacial surgeon.  A biopsy was done on Jan 10th showing that the cancer was still present in the oral tongue.  The doctor determined that it was very agressive and scheduled surgery for Jan 24th.  My husband had a near total glossectomy, bilateral neck disection, tracheostomy and a free flap created from tissue from his left thigh.  He was on the operating table for 18 hours.  Because he had completed the full course of radiation the doctors (maxilofacial surgeon and ENT) were expecting to see more tissue damage than they did.  The doc also expected my hubby to be in the hospital for 10 - 14 days.  I brought him home on day 8.  It's been a slow recovery process but he's moving along.  From day to day it doesn't seem like much but when we look back over the past 3 months we can see a great deal of progress.  Lymphedema is still a problem but we're working on that.  He started speech therapy a couple of weeks ago and, for now, that's just exercises to strengthen his lips, cheek and base of tongue (so that it can move the flap attached to it).  He's run into a few issues with the trach but those have settled down considerably.  There have also been some sleep issues but those, too, have started to resolve.  He had a PEG 'installed' prior to chemo/rads and we've been using it since the end of October.  We do blended meals rather than the boost or ensure.  SCC T4N2bM0.  I've been doing a lot of reading here and find much comfort and some good positive vibes.  Hope some day I can contribute more but for now the caregiving and household stuff is as much as I can handle.

  • Andy13460
    Andy13460 Member Posts: 115
    edited April 2017 #6
    March 5th 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

  • yensid683
    yensid683 Member Posts: 349

    Moved to Orlando FL in March of 2014, leaving the cold, snow and awful memories of treatment behind!  5 years out from diagnosis!

  • mapdan
    mapdan Member Posts: 33 Member
    edited April 2017 #8
    Enrolled in March 2017

    My name is Dan and Live in Chamberlain SD. Beautiful little town on the Missouri River. I was diagnosised with HPV Tonsil cancer in Aug 2016 and underwent 35 radiation treatments and 7 chemo treatments. My 3 month PET scan came out clean. No active cancer. I read about all the differnt throat cancers and it amazes me. Mostly high cure rates but Hell to pay for the treatment!!! This site is the best support a person can have. You can talk all day to family and friends but you folks have gone through the same battles and understand. I have survived this crap so far and plan to keep fighting. I have 3 kids to watch grow up (triplets). I recently asked a lady that was at my side through every treatment and hospital stays to be my wife. I told her we sure have gone through the sickness and health part so lets start living now. Caretakers are the best by the way!! Back at my job since December, planning on a wedding and watching my kids grow. So yes I am proud to be on this roll call. 

  • Fritz
    Fritz Member Posts: 106
    edited April 2017 #9

    Approximately 1 year since surgeries and 9 months since last chemo/rad treatment (you can check my story on my profile page).  So far so good.  Latest ENT appointment (4/12/17) shows NED.  Saliva is still very thick but able to eat about anything as long as I have plenty of liquids to chase it down. Back at pre-diagnosis weight.  Have had multiple teeth break due to radiation side effects (3 new crowns in 4 months).

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    4 years

    Yesterday 4-24-17 was my 4 year anniversary finishing treatment. I'm NED. I have 2 more appointments. One in Sept. and then in Feb 2018 at which point I will be deemed "cured". Side effects are rough at times but it sure beats the alternative! :)

    Positive thoughts and prayers



  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Noellesmom - Jim April 26,

    Noellesmom - Jim April 26, 2017 - Jim has had multiple small and large strokes over the past year but is doing fairly well. Jim is 7 years post-treatment from hypopharyngeal cancer with a 23 percent 5 year survival rate. Main issues continue to be fatigue and blood pressure issues.




  • MemphisTn
    MemphisTn Member Posts: 41

    Checking in: Most side affects are oddly, on my opposite side (left), from the side I was treated. Side affects (neurological and physical) seem to come and go, like a sine-wave, sometimes I can't tell I was ever treated, other than the loss of taste, other times throat bothers me, dry mouth etc. Anyway, clean scans, though I wish I did not have odd affects/symptoms on my opposite side. Some days Im more tired than others, but, reading from others experience, radiation is a life long commitment. Heres to hoping for another year of NED.

  • CSmiley
    CSmiley Member Posts: 11
    Quiet Addition for the List

    CSmiley (Chris) Tucson, Arizona, joined March 2, 2017. Diagnosed 3 February, 2017 w/ Stage III SCC (moderately differentiated) BOT (HPV-) Pre Surgery Staging - T1N1M0. One tumor, BOT, left side/center, 2 cm in diameter. Initially... one lymph node found, region III/IV, 2 cm, & necrotic. Surgery completed on April 12, 2017: radical, bilateral neck dissection and partial glossectomy. Post op pathology report indicates negative (good) margines from the tumor removal. 84 lymph nodes removed, 3 tested positive (left side) for SCC (no extranodal extension). Post Surgery Staging - Stage IVa (T1N2bM0). Follow-up treatment (begins 15 May, 2017). Chemotherapy (Cisplatin) 6 treatments (once a week for 6 weeks). Radiation, 30 treatments (5 treatments a week for 6 weeks).

    So far, lymphedema is really bad. Tongue has healed well, but I have lost the ability to enunciate my words and eat without biting myself and/or loosing my food within my mouth.

    I am active duty military (17 years) (United States Air Force). I'm more than happy to share with others my experience.

  • sherylcv13
    sherylcv13 Member Posts: 23
    CSmiley said:

    Quiet Addition for the List

    CSmiley (Chris) Tucson, Arizona, joined March 2, 2017. Diagnosed 3 February, 2017 w/ Stage III SCC (moderately differentiated) BOT (HPV-) Pre Surgery Staging - T1N1M0. One tumor, BOT, left side/center, 2 cm in diameter. Initially... one lymph node found, region III/IV, 2 cm, & necrotic. Surgery completed on April 12, 2017: radical, bilateral neck dissection and partial glossectomy. Post op pathology report indicates negative (good) margines from the tumor removal. 84 lymph nodes removed, 3 tested positive (left side) for SCC (no extranodal extension). Post Surgery Staging - Stage IVa (T1N2bM0). Follow-up treatment (begins 15 May, 2017). Chemotherapy (Cisplatin) 6 treatments (once a week for 6 weeks). Radiation, 30 treatments (5 treatments a week for 6 weeks).

    So far, lymphedema is really bad. Tongue has healed well, but I have lost the ability to enunciate my words and eat without biting myself and/or loosing my food within my mouth.

    I am active duty military (17 years) (United States Air Force). I'm more than happy to share with others my experience.

    Glad healing is going well. 

    Glad healing is going well.  My husband had his surgery (near total glossectomy or maybe total glossectomy - all of anterior tongue but none of base of tongue) on Jan 25th and is also healing well physically.  He's had some sleep issues which have contributed to a slowing of the mental/emotional healing process but that's coming around now.  As for the lymphedema, he had an OT who did lymph massage and taught me how to do it.  The massage, aside from being relaxing, helps the lymph to 'reroute'.  His surgeon has also 'constructed' a compression 'bandage' to help the lymphedema.  My husband refers to this compression as his 'torture' of the day but still does it a couple of times a day for an hour or so and it really helps.  I have ordered some of the supplies for the compression online.  Good luck in your future endeavors :) 

  • soonermom
    soonermom Member Posts: 155

    My husband, DOCP, was diagnosed with BOT SCC HPV positive on January 27, 2017.  We live in OK and he just completed treatment, 3 rounds of Cisplatin and radiation.  We are two weeks post treatment and hoping the brutal side effects will diminish soon and heaiing can begin.  Tired but hopeful.

  • Lipscova44
    Lipscova44 Member Posts: 4
    Vaughan Lipscomb, Huntsville,

    Vaughan Lipscomb, Huntsville, Alabama (The Rocket City and home of the Space and Rocket Center). Enrolled May 13, 2017. Daughter of William "Stan" Lipscomb who was diagnosed with SCC of lymph node with occult/unknown primary in April 2017 after lymph node swelled up VERY quickly in a matter of a week or two (actually days if you ask me, but I'm not the patient). Stage 2; HPV and P16 negative, All biopsied areas (surrounding 50 lymph nodes, left tonsil and BOT) negative for cancer. Only area that "lit up" in PET scan was lymph node before tumor was removed. Tumor was quite large and about the size of a golf ball (4+cm). 

    Dad had a neck dissection performed by Dr. Herman Teachey on April 17, 2017 and with any luck, will beginning treatment on June 1, 2017 (but is currently undecided, which is why I am here). My Daddy is my heart and soul, so I am trying to learn any and everything I can and be there for him as much as humanly possible through this battle. 

    We have 8 weeks of radiation and immunotherapy, Erbitux, scheduled. All treatments will either be at Center for Cancer Care (Dr. Hoyt Childs, Radiologist Oncologist) or Clearview Cancer Center (Dr. John Waples, Medical Oncologist). 

    Roll Tide & Go Dawgs (UGA)!!!

  • Sandraw
    Sandraw Member Posts: 40

    Doing alright. 

  • cardoza33
    cardoza33 Member Posts: 81
    Cardoza33 (Tony) California. 

    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. Update May 15, 2017.  Vastly improved over last time I checked in.  No complaints back to100%

  • MizBama
    MizBama Member Posts: 3

    Hi all. My husband was diagnosed last week SCC tongue & lymph nodes. Bot surgery on tongue and throat dissection for lymph nodes is scheduled for Friday to be followed by rads. Chemo possible. Feeling lucky that if we've got to deal with cancer its one that has such a high recovery rate. Keeping all my fingers and toes crossed that we continue to be lucky. 


  • Mom68
    Mom68 Member Posts: 108 Member
    Another Newbie

    Hi All! Mary, from Las Vegas, Nevada. Mucoepidermoid Carcinoma (still hate those words), low grade. Diagnosed April 2017. Had initial surgery to remove the lesion, and no clear margins achieved. Awaiting results of PET Scan that took place today, then surgery probably in early June 2017. Nervous, but glad to be here with a great and awesome group of people! We can do this!

  • Jms297
    Jms297 Member Posts: 4
    Jim, Egg Harbor Twp, N.J.

    I was diagnosed  on January 6 after suffering a mini stroke. While doing test of carotid arteries they noticed a mass on one of my lymph node.  Primary site was my right tonsil so I had a neck dissection on Feb. 28 and TORS surgery on March 3 to remove the tonsil, part of soft palate and rear tongue.   30 lymph nodes were removed with 4 showing positive but none of the 4 were out of the margins.  I am now doing radiation treatments and today was my 9th one so only 21 left. No chemo.