ROLL CALL 2018 - Updated January 1, 2018 CLOSED!! DO NOT POST HERE!

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

ROLL CALL 2018

1st Update January 1, 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.

I appreciate those members who participate, but wish more members would give us an update on how they are doing.

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 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.

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 f

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Comments

  • yensid683
    yensid683 Member Posts: 349
    #2
    yensid683

    crossed the 5 year threshold in July of 2017, doing well and adapting to the new 'abi-normal' that is the permanent aspects of treatment side effects.

    It may be a challenge to eat, I have to be careful in the sun but at the same time, I'm here and doing great!

  • Landranger25
    Landranger25 Member Posts: 210 Member
    #3
    All Good Now

    Diagnosed June 2009 SCC base of tongue. 10 weeks of Cisplatin-5FU/30+ radiation sessions, no surgery. Took about a year to get back to anywhere close to what I was before. All good now.

     

    Mike

  • MikefromWinthrop
    MikefromWinthrop Member Posts: 31
    edited January 2018 #4
    MikefromWinthrop

    Diagnosed Aug 2017 SCC base of tongue, 1 node involved. 35 rads and 5 weekly cisplatin, lost 34 lbs, treatmant was over 15 Nov, eating by mouth for 4 weeks now, did have a thrush setback which sucked, PET in February

  • Andy13460
    Andy13460 Member Posts: 115
    #5
    Update Andy13460 Ireland

    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!! 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    WhoDat... 2018

    Hey Matt, and all of my fellow longtime buds and budettes.. I'm doing well, retired now and working mainly on photography, and my art.., though I do still fish.., LOL..

    I just spoke to IrishGypsy and he's doing well with his significant other, , their new little girl. and his yellow lab Abby. I speak to Dawn (Sweetblood22), Roz, and Ingrid pretty much daily.., oh.., and Patty also.

    Hang tough, and NEGU..

    John

  • armana
    armana Member Posts: 97 Member
    edited January 2018 #7
    Doing Great

    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.

    Arman Aransen from DFW metro Texas.

     

  • Viking18
    Viking18 Member Posts: 5
    #8
    Living and Learning

    Enrolling for 2018.  Joel from the Washington DC metro area.  Diagnosed with Olfactory Neuroblastoma in October 2017. 

    Almost four weeks ago, I had surgery to remove the tumor at Johns Hopkins.  My medical focus for early 2018 is to heal and recover as much as possible so I'm in good shape for radiation therapy.  Meanwhile, I try to take each day as it comes, enjoy time with friends and family, and learn more about what really matters.  I am grateful for the information on this forum and the wisdom of the good people who share it.  Thank you!

  • prmatzke
    prmatzke Member Posts: 1
    #9
    Joining the group!

    Hello, all!  My name is Trish, and I was diagnosed with squamous cell carcinoma on my tongue and in 9 lymph nodes in February of 2017.  I completed my last stage of treatment mid August, and my PET in November was all clear.  I want to say thank you to your many contributions on this site.  You all have given me honest answers to questions I had about my treatment and side effects.  I am healing fairly well, but hope that this trend will continue as I am still unable to eat “real“ food and still suffer with intermittent stomatitis .  All that said though, I am grateful to be alive and relatively well! Again, the support of shared experiences has helped me tremendously, and I hope to continue to learn more from you all as our journeys continue.

  • Grandmax4
    Grandmax4 Member Posts: 723
    #10
    Still here

    Happy to see so many familiar faces and names, Best wishes for a wonderful, healthy 2018

  • patricke
    patricke Member Posts: 570 Member
    edited January 2018 #11
    STILL HAV'IN FUN

    It is great to hear from and about so many of the folks who I have been wondering about.  Life overall, has been and is great.  I have been having more fun than the law allows, especially hiking and camping in south Florida, and last summer, in the White Mountains of New Hampshire.  I did, however, have another battle with the beast about this time last year, when, a couple of tumors were found in the soft palate of my mouth, requiring another dance in the surgical suite at Beth Israel-Mount Sianai in NYC.  The interior of my mouth on the upper right side was remodeled using a flap of tissue from the exterior lining of my stomach, to fill in space where the tumors were removed.  Oh, did I mention that the tumors were attributed to, wait for it, the ever popular radiation therapy; the gift.....  After going through the usual post surgery recovery gauntlet, I was back on the trails again by June.  No radiation or chemo were necessary.  Actually, I don't believe that I am a candidate for radiation any more, given all of the fibrosis of so much tissue in my neck.  I plan on heading back to NH this summer, for a month or two, camping in Gorham, to go all mountain man and bag as many peaks as possible. If there are any hikers out there who's would like to join me on some hikes, on any level of difficulty, drop me a message.  As always, I am just happy to be here.  Best wishes to everyone to have a most excellent year.           Patrick

  • Elenanic
    Elenanic Member Posts: 2
    #12
    I just want to say Hi

    I am glad I've found you!

    You are giving me hope...

    When one finds out the diagnostic one fears the worst...:(

    Tears every day...But learning to thank God for the gift of life He offered me!

    I was diagnosed with MEC (hard palate) in October 2017 after a second surgery.

    The first surgery followed by a biposy showed a benign lesion or maybe a lot of incompetence...

    The first wound never healed and after 6 months I went to the Hospital and asked them: what on earth  is happening with me, why there is still a lesion in my mouth and not  a scar.

    They removed it immedialely and - analyzed  it by 2 laboratory - carcinoma was confirmed.

    They say it was low grade with no neural invasion.

    Unfortunatelly the margins were less than 1 mm. You know what this means...

    I am so afraid that  my lymph nodes were affected.

    I am very much aware about every breath I am taking about every little pain or small twitch that appears anywhere in my body.

    Sometimes I get a bit dizzy or itchy - and a thought crosses my mind: could it be a reocurrence?

    We do not have clear protocols in our country and I trust not so many people to talk about this.

    I haven't told anyone at work and I do not intend  to let them know about that - due the stigmate cancer induces and due to all that negativity and compasion that I cannot handle properly for the time being.

    I wish I hear more from those who had a low grade MEC of the hard palate and didn't remove it immediately. Are you OK now?

    I have lived with it for as long as 18 months - starting from the first day I became aware that I had  a cyst on the upper side of my mouth that appeared out of nowhere. (It didn't give any symptom until December 2016 when it burst causing me a lot of pain for about 2 to 3 days).

    Ending with the second surgery which will be probably followed by a third one due to postive margins.

    All the best to all of you

    Elenanic

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    edited January 2018 #13
    Still Here! Still doing well!

    I'm still working and playing in the Sierra foothills of California. Still healthy, with no recurrances, but a few long-term side effects, as we all have.  I hope everyone here has a happy and healthy 2018!

    Deb

  • psychedoutca
    psychedoutca Member Posts: 16
    #14
    Still here!

    Have not checked in, in awhile, but he is still here. Stage IV Nasopharyngeal squamous Cell Carcinoma, with mets to bone & Liver. Since last check in we have gone through a few clinical trials, and cancer has progressed. His liver is covered with mets. As of last month the oncologist said it’s tine to prepare.  We received Foundation genetic testing indicating a possible sensitivity to Ibrance. We start that soon. It’s not covered for H&N patients only breast cancer, but we are going to try anyway, he is on 46, we are nt going down without a fight. 

  • Laralyn
    Laralyn Member Posts: 532
    #15
    Checking in for 2018!

    I see my last update was when I was in first-line lung cancer treatment, most likely a new HPV+ primary since there was no recurrence at the original site (tonsil, lymph nodes, soft palate). Chemo/radiation initially worked but at the 6-month mark, there were very small nodules growing in both lungs. I went into an immunotherapy clinical trial (dual agent, Opdivo + an IDO inhibitor called epacadostat). About 3 months into the trial, CTs and then a PET scan were clear--I had what's called a complete response. It's been durable--after over a year, I'm still cancer-free. Who knows what the future holds, but I'm grateful for more time in relatively good health!

  • CSmiley
    CSmiley Member Posts: 11
    edited January 2018 #16
    Update

    Tucson, AZ enrolled April 30,2017 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.

    UPDATE (1/28/2018) Life is getting back to normal. I am seeing a physical therapist twice a week for scar tissue and lymphatic message. I also recently began using a Tactile Medical lymphedema message unit designed for the head and neck. The battle against dry mouth and neck fibrosis is on-going. The ringing in my ears has lessened, but not yet completely gone. I am still an active participant in a medical drug trial, which requires me to receive a single round of chemo every three months. The chemo has a way of taking me back to when I was at my worst. My most recent scan came back clean. I am disease free as of now.

    I am still pending a medical review in the military. I do not know yet if I will be forced to medically retire or continue my pursuit towards my twenty-year goal. Good luck, and God Bless!

     

  • Peneloppe
    Peneloppe Member Posts: 28
    #17
    Peneloppe caregiver of Mike,

    Peneloppe caregiver of Mike, Montreal, Canada.

    Mike was diagnosed july 2017 Nasopharyngeal squamous cell carcinoma with locoregional lymph nodes metastasis and Epstein Barr Virus.

    35 radiation with 6 schedules cisplatin chemo, was unable to do last chemo, was hospitalized for febrile neutropenia and malnutrition at end of treatment, developped sepsis but made it.

    now 3 months post treatment doing well in general.

    first ct scan showed 50% reduction of cancer, which is not what we expected, now it is wait and see

  • Andy13460
    Andy13460 Member Posts: 115
    edited February 2018 #18
    Andy13460 Checking in Feb 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.

  • CatPerson
    CatPerson Member Posts: 9
    #19
    First Check In

    Hey folks,

    New to the boards and hope to see you all peridoically. 

    I'm newly diagnosed with olfactory neuroblastoma as of December 2017 and have yet to recieve radiation. Currently awaiting 2nd surgery to remove hopefully all of the mass as the 1st surgery was mostly for diagnostic purposes. Also awaiting another CT scan of neck to see if it's metastasized. 

    Well wishes to all. 

    Peace and long life.

  • jtl
    jtl Member Posts: 456
    #20
    Checking in from Venice, FL

    It has been 6 1/2 years since I finished my last RT for thoart cancer.  It was stage 3 and my treatment was RT and Erbitux.  My only side affects todate is an occasional neck cramp.  So all is good.  Best wishes to all of you.

  • lorig01
    lorig01 Member Posts: 83
    #21
    Checking in

    Happy New Year to all. Just checking in.  5 1/2 years out from treatment and doing very well.  Cannot complain.  No major issues and eating well. 

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