ROLL CALL 2019 - SECOND UPDATE JUNE 17, 2019 CLOSED

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CivilMatt
CivilMatt Member Posts: 4,723 Member
edited October 2019 in Head and Neck Cancer #1

 PLEASE READ

ROLL CALL 2019

Second UPDATE June 17, 2019 (Full moon tonight)

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.

ROLL CALL Guidelines:

A H&N member will be enrolled in the current and active Roll Call on the date they leave a post to this thread or if they contact me (CivilMatt) and asked to be included in the Roll Call.

It is desirable to have a members supply their name, city, state and dx for their description.  These items will NOT BE A REQUIREMENT, but CivilMatt is asking you “why not include them?”

I would ask you to be creative on your location if you prefer to not give the city and or state in which you live.  Such as: I live down the road from the dog that is always barking and spinning in circles or I live east of Chicago or I have radiation1 brain and I am not sure.  Something that CivilMatt can hang his hat on, please. Almost anything is better than “unknown”.

I will copy all of your information you provide into the current ROLL CALL. You simply sit back, relax and enjoy.

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. Note:  ALL edits will be corrected during the periodic UPDATES to Roll Call.

So far, this year there have been 39 existing members and 7 new enrollees for a total head count of 41 members to ROLL CALL 2019. 

I appreciate those members who participate, but wish more members would give us an update on how they are doing. I will even contemplate anonymous submittals about old timers, (how that would work I have not a clue, yet.  I know there are existing members out there but they choose not to update their current status (themselves).  If you have read many of their posts you would wonder (like I do) why they do not update their profile on here. Many of the earlier H&N members really poured their heart and soul into this forum (in years gone past) and that is why CivilMatt considers the Head and Neck forum to be the best on the CSN website, bar none!  You may know one of these  H&N members who have not checked in recently, if you do, please ask them to stop by the H&N forum and let us know how they are doing.  Now, I am going to bed, “good night all”.

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

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.

ADBWanderer Barry from Flagstaff, Arizona, Esthesioneuroblastoma Polyp surgery June 2018, dx June, surgery August 2018 in Tucson AZ Currently getting cisplatin every third week and radiation M-F for 6 weeks. Doing pretty well with fatigue as the main symptom. I am the caregiver.

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.

Alpinelife no name, city or state. Enrolled February 4, 2019 I’m still here. I began my cancer journey late 2013 with Stage 0 tongue cancer. Have had two recurrences, the last in Oct 2017 as stage 4 tongue cancer. Treatment ended in Feb 2018, since then have been NED. A tough journey, but life remains good.

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.  Checking in June 14, 2019, Still here nearly 2 years out of 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 embol

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,367 Member
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    wbcgaruss Checking In

    I had throat cancer and treatment 2012-2013-35 Rads and 5 chemos.    Russ-Washington Boro-Pennsylvania

    Tongue cancer last year, a small spot. ENT operated June of 2018 and got clear margins. Lost just a small amount of tongue. Generally feeling good but my worst leftovers are dry mouth and especially neuropathy. And I think I still have some chemo brain. But I am still on this side of the sod and God has blessed me Greatly. Take care all.

  • wild willy
    wild willy Member Posts: 63 Member
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    checking in

    still going. still no taste, still trouble swallowing. all the pains we all have. memory shot to hell.

  • Tanager75
    Tanager75 Member Posts: 89 Member
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    Checking In

    I live in the Pacific Northwest

    I look at the discussion board periodically.  The posts were such a help 10 yrs ago.  I was diagnosed July 2009.  This started an amazing journey.  The last 10 years has seen a grandchild, a retirement, and so many adventures with my wife.  I still have reminders like dry mouth, memory lapses, neuropathy, and a couple other issues.  I had a good team who took care of me 10 years ago.  I have been blessed the last 10 years. 

  • lorig01
    lorig01 Member Posts: 83
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    Still kicking

    All is well here. Diagnosed with tonil cancer 2012.  No recurrences so far and eating is back to normal.  Prayers to all.

  • Landranger25
    Landranger25 Member Posts: 210 Member
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    10 Years

    Just checking in. June of 2019 was the 10 year anniversary for my SCC BOT diagnosis. So far so good, no recurrance. Dealing with the side effects from the treatment (Chemo and rads) but they are minimal all things considered.

  • wmc
    wmc Member Posts: 1,804
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    Checking IN.

    Coming up on 6 years this Oct and still running a Laryngectomy Support group. We're global and members in 19 countries. Still doing a few videos to help them adjust to breathing through there neck instead of the nose.  Just trying to help those that need it as I was helped so much. Heck, I wasn't supposed to even make it but I drew the long straw and beat it.  Please all stay well. 
    Bill

  • Guzzle
    Guzzle Member Posts: 710
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    Checking in.  Past 5 years. 

    Checking in.  Past 5 years.  All good so far! 

  • Klingels
    Klingels Member Posts: 78
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    Checking in

    Just had 2 year anniversary for cancer treatment. Back to work full-time, still 40 pounds lighter, eat slower but most everything I want. Don't like the tastes of sweets any more especially ice cream. It has no taste. Energy level is back to normal.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
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    Checking in...

    As of April, I'm 6 years out and as of my last check up in April 2018, I am considered cured. Side effects as expected. Swallowing challenging at times (still chew, chew, sip, swallow), neuropathy in my feet, spasms in my neck etc. but it's part of the new normal. My singing voice is back around 95% and I've been performing since 2014 after taking a year off. Overall I'm doing well. Best to all the warriors and survivors. It's not easy but it's doable.

    Positively

    Mark "T"

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
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    3 month NED Checking In

    I am new to the roll call and just wanted to say I am 3 month NED.  I was diagnosed with squamous cell carcinoma of the tongue and underwent surgery to remove part of my tongue until they got clear margins.  Day of surgery my twin sister held her hand on her phone on the image of Saint Pope John Paull ll and I know I was blessed with a miracle from God because they did not have to do a neck dissection and I did not have to get a feeding tube even though those things were to be a part of my treament it turned out I only needed surgery.  My speech is improving and I do excercises with my tongue everyday.  I have trouble sometimes eating because I cannot feel my tongue it is still numb without feeling and when I chew I really have to be careful with biting down as I have bitten my tongue several times now after I am off the liquid diet and it was quite painful and a mess. I have to watch myself when I eat.  But all in all I thing I am improving more each day and think about all of us going thru this journey and how much I really do care about each and everyone and their stories and messages.  It is a blessing to me and I thank you all for being there when I first wrote about my diagnosis and was so scared and frightened. I received so much support from this forum and am very grateful to you all. 

    CivilMatt Thank you for including me in roll call and for doing roll call you are so special indeed.  God Bless All and Keep Us All Ache, Pain and Ailment Free and NED!

     

  • gdawg55
    gdawg55 Member Posts: 40
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    Checking In

    Going on 5 years NED since my diagnosis.  Thank the Lord all is good so far.

     

    God Bless!!

  • Dolphinswae
    Dolphinswae Member Posts: 6 Member
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    Klingels said:

    Checking in

    Just had 2 year anniversary for cancer treatment. Back to work full-time, still 40 pounds lighter, eat slower but most everything I want. Don't like the tastes of sweets any more especially ice cream. It has no taste. Energy level is back to normal.

    Me Toooo

    I had my two year anniversary (nasalphrengeal) in September too! I don't like sweets as well especially my old all time favorite ice-cream like you. I've gained 36 pounds and actually have no need to gain the last 26 pounds because I'm now officially overweight by a couple of pounds. Lol. I went back to work last year but decided to retire because I no longer had the energy to teach 24 Kinder babies. I live in the land of leisure but bored out of my mind. So what do I decide to do? Volunteer to help teach 24 Kinder! I have many side effects but as long as I stay in remission, won't complain. I'm just so appreciative that I'm still here to support my children who aren't quite cooked yet. Gotta get the last one out of college. Blessings to everyone.

  • Steve1959
    Steve1959 Member Posts: 28 Member
    edited October 2019 #14
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    STILL GOING STRONG!

    Hi everyone. Still going strong three years after my surgery and radiation treatment. Only one concern, small nodule on my left lung. My oncologist is monitoring closely with the usual CT/PET scans. So far so good. The nodule isn't growing. My oncologist has indicated that I am not out of the woods until the 5 year mark and the nodule in my lung doesn't grow anymore. With that said, we travel a lot more, have simplified our lives and just appreciate life in general and everyone around us. Including all of you on this site. Yes including you too CiviMatt! I enjoy everyone of your inputs to this forum. We all need a good laugh and you provide. Thanks for that. All the best to each and everyone of you.

     

    Steve

  • ratface
    ratface Member Posts: 1,337 Member
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    10yrs here

    Hi everyone, I'm doing really well 10 yrs out. Gratefull to still be typing! I was BOT stage four, cisplatin, 39 RADS,  and a neck disection.