ROLL CALL 2019 - CLOSEDInitial Submittal February 19, 2019CLOSED

CivilMatt
CivilMatt Member Posts: 4,724 Member
edited March 2019 in Head and Neck Cancer #1

ROLL CALL 2019

First Posting February 19, 2019

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. 

Second off (when First off isn’t enough), Pretty please, do not get mad about the (really, quite lacks) requirements for submittal to the ROLL CALL.  They are your (H&N name, handle, Avatar), your  real name (first only satisfies) city and state (or village & country, you figure it out) diagnosis, treatment and whatever you want to say about your cancer or yourself. These were rules (and we will bend them for you) which HAWVET put in place when he started the ROLL CALL in 2008.  If you ever had a chance to read HAWVET’s postings you would see that he used to tell people that they were not enrolled (unless you asked to be, I had to ask) and he would email those who did not respond to his annual “check-in if they did not check-in.  He was a cool cat.  Now, let us see if the rest of you “Cool Cats” can come through for me.  If not, I will adjust as needed.

Here is a brief example of HAWVET back on January 12, 2014: “We survived and are into the year 2014. We had 124 folks who enrolled or checked back in. There were 46 who failed to return and their names have been transferred to the MIA listing. Enrollment is voluntary and is separate from the date you joined the forum. Thank you for enrolling. Please enroll or update your status.

See, I told you the ROLL CALL had (has) rules.  

 The final ROLL CALL 2018 left me with egg-on-my-face, as the H&N forum had a meltdown of sorts and I did not have my most important data saved (the member head count for th

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2

    Members,

    I have included a death notice of soccerfreaks with this first posting. This was an unusual post for me as I did not have any information from members after they respond to a death notice  of a H&N member.  Instead, I decided to do some research on soccerfreaks and put some words together on him and post this information in my ROLL CALL 2019.  I do expect and encourage “old timers” who knew him and wished to post something about him to go ahead and do so and I will include their comments in my next update.

    Matt

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    edited February 2019 #3
    Still Kicking - 2019

    Thanks Matt for taking over the helm that myself and many others used to man frequently. I'm still doing well, photography, art and fishing since retiring early 2017. I'm still in contact with many or the originals mainly via Facebook, Ingrid, Dawn, Roz, Patty, Stacey, Jeff, Charles and many others on occasion.

    Very sorry to hear about Joe (soccerfreaks), he was a great guy.. 

    It always takes a piece of my heart when I read of yet another passing of the many great people that I have met on here (and in person).

    Best Always,
    John

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #4
    Matt my 2019 Check In

    I had throat cancer diagnosed in late 2012. My cancer team formulated a plan and the first week of January 2013 I started in-hospital treatment of 24 hours a day chemotherapy to shrink my tumor. Then had another of these after my blood count recovered. I was originally scheduled to have 3 but 2 shrunk it enough to go to phase 2. Phase 2 was the standard H & N treatment you read on here so many have gone through 35 rads and 3 more chemo treatments. All scans were clean and clear till early last year when I was just shy of 5 years and I got a sore spot on the left side bottom of my tongue. Confirmed biopsy showed positive for cancer so my ENT operated and got clear margins so here I am doing pretty darn good. I thank God for all my Blessings. And I thank you, Matt, for all you do for this forum-Russ

  • MickeyD
    MickeyD Member Posts: 14
    #5
    Nane & Place

    Matt:  Forgot that you wanted name and place.  I live near Ft. Myers, Florida.  My Mother, family and friends call me Mickey.  The SSA and IRS may use another name, but Mom trumps the Feds.

     

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    MickeyD said:

    Nane & Place

    Matt:  Forgot that you wanted name and place.  I live near Ft. Myers, Florida.  My Mother, family and friends call me Mickey.  The SSA and IRS may use another name, but Mom trumps the Feds.

     

     

    RC info

    MickeyD from Florida (almost sounds made up), but let’s roll with that.

    I am not one to turn away new members to the ROLL CALL, but I do truly appreciate enrollees providing the information which HAWVET wanted for this site.  Maybe, it will be good for some members to know a little bit about eachother.

    Matt

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #7
    Info update

    Info update

    from Parksville BC Canada. Treatments at BC Cancer Agency in Victoria BC

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #8
    Hey Matt

    I wasn't paying attention-gave status and history but not all you wanted-Name-Russell-I live in Washington Boro, Pennsylvania. Take care thanks for doing this and remembering HAWVET and carrying on-God Bless

  • big G
    big G Member Posts: 177 Member
    #9
    wbcgaruss said:

    Hey Matt

    I wasn't paying attention-gave status and history but not all you wanted-Name-Russell-I live in Washington Boro, Pennsylvania. Take care thanks for doing this and remembering HAWVET and carrying on-God Bless

    Details

    Gary, in Aiken South Carolina. Thanks for the roll call.

  • ERomanO
    ERomanO Member Posts: 323 Member
    #10
    Thanks, Matt

    My entry starts out with "No name, Eugene, Oregon".  Well, my name is Eugene, but I do not live in Oregon.  I live in Canton, Ohio. :)

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    ERomanO said:

    Thanks, Matt

    My entry starts out with "No name, Eugene, Oregon".  Well, my name is Eugene, but I do not live in Oregon.  I live in Canton, Ohio. :)

    ERomanO,

    ERomanO,

    Good to know.  There are many differences between Eugene, Oregon and Canton, Ohio.  

    I do appreciate the efforts of the members who wish to be included in the ROLL CALL to provide the info requested.  This is just an informational post created by the H&N members.

    There have been members in the past who take the information and search certain words to find out about other members who share(d) their dx (HPV, SCC, NPC…) or treatment (radiation, Erbitux, cisplatin…).

    I know of a few H&N members who have found other members in their area and they meet up to share stories.

    I like putting the ROLL CALL together and I will continue to keep it interesting and relevant (that is looking through Matt’s rose colored glasses).

    Now, it is out to the garage and finish some shelfs, an eBay box and package assembly table and storage and miscellaneous other things.

    Keep on posting.

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    #12
    Where In the world is

    Barbaraek? I failed to give you a place Matt. I live in that winter wonderland Buffalo NY., also known as “The City of Good Neighbors“.

     

    Cheers!

    Barbara

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited February 2019 #13
    This is the inner workinhgs of Matt's ROLL CALL.

    RC Participants,

    I will be doing a RC update very soon (not an edit). I will wait until I feel there are enough edits, revisions and RC member updates in my “to do” basket to make an update NOW worth my while.

    This may leave those members who are waiting on corrections to wonder “ is Matt going to fix this”?  Yes, I am, and it will be soon.

    From Eugene, Oregon to Canton, Ohio, the wheels of ROLL CALL correctness are in motion.

    After a trip out to Home Depot I shall return for more involvement in our H&N World.

    Thank you,

    Matt

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #14
    Still Here

    Great job Matt for keeping this thread up to date.  Tommy here on 02/23/19.  DX: Mucoepidermoid Carcinoma back in Sept of 2011.  Had surgery to remove a base of tongue tumor, then a radical right neck dissection to remove a couple of positive lymph nodes.  Wrapped it up with a lower dose of rads to avoid bad side effects.  Also had clear margins so that was okay.  It seemed to help with getting my taste buds back along with one major saliva gland working good.

    Next PET scan should be done this year. (2019)  I am completely blessed to be back to maybe 75% of normal.  A lot of small issues but nothing compared to what all of you who had SCC have had to go through.  A day doesn't go by that I am not grateful for my life.

    From Las Vegas, NV.  Age: 64.

     

  • donfoo
    donfoo Member Posts: 1,773 Member
    #15
    same same

    Passed 5 years last summer. Nothing has changed except older. Very thankful that I'm living well, enjoying life each day, no meds, and the only long term side effect is the fibrosis in the neck and jaw area. Even thyroid seems to be holding up. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #16
    donfoo said:

    same same

    Passed 5 years last summer. Nothing has changed except older. Very thankful that I'm living well, enjoying life each day, no meds, and the only long term side effect is the fibrosis in the neck and jaw area. Even thyroid seems to be holding up. 

    Hi Don

    Donfoo,

    It is nice to see you checking in. You have been very successful with your treatment, and both short-term and long-term recovery. You really did take “the bull by the horns” when you were in the planning phase.

    I was asked many of the same questions as you were, but I just kept saying, yes I will have surgery, yes I will have the radiation, yes I will have the Erbitux, yes I will have a PEG.

    As it turned out, I am fine. I have some dry mouth issues, my taste is different now (not quite as good), but it is ok.  I still expect many foods to taste as they did before, but they do not.

    I will continue to work on things which I believe I can improve and I will try  to stay healthy.

    Do you still have your motor home and have you been going place? My town of Albany, Oregon is right  on  I-5 if you every come this way.

    Matt

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #17
    more about how the RC works

    Members,

    Just in case any of you wondered why I did the statistical analysis on the data for 2013 thru 2017 was for determining a total number of H&N members enrolled in the roll call for the calendar year 2018, was because that is the number I lost with the problems the H&N forum had. The data I used was to come up with my 2018 data was as shown below:

    2013   124     (actual)

    2014   181     (actual)

    2015   186     (actual)

    2016   211     (actual)

    2017   253     (actual)

    2018   277     (predicted)

     

    Matt

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #18
    Definitly Increasing Numbers Matt

    I wonder if there are more people with H & N or more people finding this site and sticking with it or just more people deciding to join in on the roll call. We may never know for sure. But one thing I do know for sure your input on the forum and hard work with doing the roll call and with honoring HAWVET is appreciated. Thanks, Matt.

  • cureitall66
    cureitall66 Member Posts: 913
    #19
    We're here!

    It has been 7 yrs NED for Kreg! He still continues to get check-ups just for peace of mind. He is doing great and there is nothing that stops him these days. We enjoy riding the Harley, he loves to golf, and we are currently buying a different home and he's doing most of the remodeling. Life is good. I'm sorry we are not on here much anymore. I am currently preparing for RN nursing clinicals at the age of 53, my prerequisits are done after 4 yrs of school. We're super excited for this next adventure. Love you guys!

  • Guzzle
    Guzzle Member Posts: 710
    #20
    Guzzle Liverpool UK

    Doing well. 5 years in June. I'll never forget the support I got here  Just walked last 120 miles of El Camino. In contact with many fellow warriors and had the privelidge to meet a few.

     

    YNWA X

     

    GARY 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #21
    Debbie Jeanne, doing well.  7

    Debbie Jeanne, doing well.  7 yrs cancer free TODAY!!  yay me.  8/2009 Larynx cancer.  35 rads no chemo.  2/2012, cancer came back.  total laryngectomy.  very rough road for the next 3 yrs but today i'm happy to say, I am doing great.  Like you, i still have many side effects, and i stretch my throat myself every other day to keep me able to eat.

    Cincinnati, Ohio

    Wow, it has been too long since I've been here.  I see all the names i recognize and I realize what i've been missing, my friends!!  So to those who know me, it is so good to see you again.  To the others, let me introduce myself, I'm Debbie and i look forward to getting to know each of you but i''m sorry you need to be here.  God bless you all.  Man, it is GREAT to be back!!  Thank you Matt!!

     

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