ROLL CALL 2017 - UPDATED APRIL 21, 2017 CLOSED
ROLL CALL 2017
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
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