Matt's humdinger of ROLL CALL informational post!

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

Dear H&N Members,

I (CivilMatt) is very much alive and wish to continue with the ROLL CALL, as I have been doing for a number of years.

Just so you all understand what I am doing when it comes to the ROLL CALL, I will explain henceforth,  for H&N Member clarity:

First off, I try to stay true to the “basic rules” as laid out by HAWVET (originator of the ROLL CALL). That means you are enrolled on the day you asked to be included and not the date you signed up for the H&N Forum.  Not a big deal. As an example, I enrolled as a H&N member in June of 2012 and a ROLL CALL member in October of 2012 (see, very easy).  It is important (to someone, I am sure) that all of this information we share is completely voluntary.  Enrollees are also asked to include their first name and the city and state they currently live in and of  course their diagnosis, treatments and results. I will print whatever you wish to share.

Next, I am always gathering information from members for updating the (current) ROLL CALL.  I usually update the ROLL CALL when I get around 20 responses (not too few and not too many), but it sometimes takes a long time for members to drop in and give us (me, we, the keeper of the ROLL CALL) their update information. So, sometimes it takes longer than others. I am still fiddling with “when to update”.

An Important note for all of you to know about is, I try not to perform edits without updating the ROLL CALL post, as this can be disastrous.  The layout I have chosen, including fonts,  style and spacing  does not play well to edits and can be a real B _ _ _ _ _ to repair once the edits are input. I can lose a lot of information fast or ruin what I believe is a perfect layout.

How the information is included has changed since I have taken over.  When HAWVET put together the ROLL Call and its subsequent updates he might re-write and condense what you provided to him. I do not do re-write and condense what you post.  I (try very hard, really I do) to include everything you write in your update, with as few edits as I can comfortably live with.  If you misspell a word or use the incorrect grammar, I will usually print it “as-is”. Not always, but quite often.

I really like this forum and I have read a lot of the posts on this site. I have tried to introduce myself and talk to many of the members before my time.  I bet many of you did not know that the H&N forum used to include esophageal cancer and the members fought a lot (and were not very nice). Not like today, where we are a well behaved (loyal and honest) group, trying to help each other get through this “mess we are in”.

Like many times in the past, I keep going on and on during one of my explanations.   I think I have provided you with the basic information about the ROLL CALL  and what it takes to provide all the information you have provided to HAWVET  (formerly) and CivilMatt (presently).

Finally, (the bad news) the CSN disruption (which occurred here recently) lost much of the update information.  Not all, but much of it. I try to save the entire ROLL CALL on occasion so that I can make my updates accurate.  I did make a save and a ROLL CALL revision in November 2018 because H&N member jonsonbl brought an error to my attention concerning his post.  I thought the mistakes were too great to leave alone and not great enough to mandate a ROLL CALL update. So, I did do what I do not like too and I did an edit to the RC.  I was mostly successful and I have his update to go back to. The problem with this is, I lost, maybe recent 20 posts.

I would like members who remember that they posted in the last half of 2018 to re-post their comments.  Also, if SuzyJ will give me (her) permission I will include the posts to her thread to be included in the one and truly only ROLL CALL 2019. And please remember, include your first name (what your Mom calls you) and the city and state where you live and your dx.

Now Matt is going outside to work on some projects for a while. Thee current temperature is around freezing here today in Albany, Oregon, but no new snow.

Matt

Comments

  • MarineE5
    MarineE5 Member Posts: 1,032 Member
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    Thank You CivilMatt

    CivilMatt,

    Just a short Thank You for doing the Roll Call that HAWVET started years ago. I try to check in with the Roll Call when you ask. Again, Thank You for what you do.

    My Best to You and Everyone Here

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    MarineE5 said:

    Thank You CivilMatt

    CivilMatt,

    Just a short Thank You for doing the Roll Call that HAWVET started years ago. I try to check in with the Roll Call when you ask. Again, Thank You for what you do.

    My Best to You and Everyone Here

    I am easy to please

    MarineE5,

    Thank you. I will try to contact you if I am not going to do this anymore.  You have consistently been one of the first H&N Member to share your information with the forum. I have not been very successful in getting some of the “old timers” to respond to the ROLL CALL, but then there you are and all is well in Matt’s World.

    See you around.

    Matt

  • SuzJ
    SuzJ Member Posts: 432 Member
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    YAY!

    You're back!

     

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    SuzJ said:

    YAY!

    You're back!

     

    I am something?

    SuzyJ,

    Thank you for your understanding.

    I do not want to step on your toes.  When I reviewed my (10) posts to you I remember how difficult treatments were for you and the last thing I wanted to do was be a “thorn in your side”. 

    As it turned out, all is well in the H&N forum and I we can (all) continue with our task of providing information and help to all H&N members which seek help.

    Matt

  • skidog
    skidog Member Posts: 74 Member
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    checking in..

    HNC right lymph node, right tonsil. last rads treatment July 7th 2018. 6 months NED! first name: Rod, city: Lodi. state: Wisconsin.

  • frokker68
    frokker68 Member Posts: 49 Member
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    Hey Matt

    Good to see you again!   I'm still here but not as often.  Hope all is well.

     

    Keith

     

     

  • ERomanO
    ERomanO Member Posts: 322 Member
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    My official [re]check-in

    My GP noticed swollen glands at my yearly physical in Jan 2018.  Two weeks later there was increased swelling of lymph nodes, followed by multiple needle biopsies, then finally a diagnosis in March - SCC on BOT, HPV+.  RO told me that had I been diagnosed prior to Jan 2018 I would have been considered Stage IV, but due to their success rate in treating and eradicating my cancer was considered Stage I.  I began my 35 rads and 3 rounds of cicplatin on April 30 and finished on June 18.  As I've said elsewhere, treatments were a relative breeze.  I had the constant foaming saliva and horrible phlegm, but swallowing was never a problem (until the 5 days following my last treatment).  In fact, up through my 7th week I still enjoyed 4 eggs and a pile of bacon for breakfast everyday.  But I was still hard pressed to get my 2000 calories a day and was essentailly on an Adkins diet because all carb foods tasted awful.  I lost 30 pounds through the summer, but my taste buds roared back to within 80% rather quickly and I've gained almost all that lost weight back.  Ongoing side effects have been a roller coaster, and even daily they tend to wax and wane, but overall I feel quite good.

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    words to ROLL CALL by

    We may not be the biggest or most active form, but our members are great.

    Send me your RC enrolling, update, last year, this year (PM, this thread, SuzyJ thread, where ever) and I will find it and get it all into the RC to be posted when ready.

    Matt

  • patricke
    patricke Member Posts: 570
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    Still Hav'in Fun

    Hey Matt, it's great to see that you are out there, and hopefully liv'in large, hav'in a ton of fun.  I'm still alive and kick'in after another round with the beast in 2017.  I'm doing great now, and hav'in more fun than the law allows venturing out into the wilderness swamps, forests, and on mountains.  Let's all Keep It Mov'in Forward!

    Patrick

  • nancytc
    nancytc Member Posts: 70 Member
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    Checking in!

    Hi! Nancy from Oakhurst, CA. I was Stage 4a Right Tonsil with 3 lymph nodes infected, and diagnosed in Dec 2016. My treatment consisted of 33 rounds of Radiation Jan-Mar 2017 concurrently with 2  megadoses of Cisplatin (I had significant hearing loss from the Cisplatin and had to skip the final one).  I do have many long term side effects like serious swallowing issues, dry spots on my eyes, digesetion difficulties, but I work hard every day to work to get better, and also to have FUN and stay as healthy as humanly possible!!! I just swam with the Manta Rays last week in Kona HI, as well as enjoying dozens of amazing hikes in the lava fields. Life is VERY GOOD INDEED!!!!!

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Matt my Stats--

    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

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

    Matt my Stats--

    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

    Checking in

    Diagnosed SCC BOT in August 2018 by lump on right side of neck. I had selective neck dissection both sides,removed nodes 2-4,right side several positive no ECS, left side clean and TORS surgery in back to back weeks in Sept. 2018. I started  33 IMRT rad treatments in October to the right side finished tx in December. I have a C-T scan of the head,neck, and chest on 3-5-19 will get the results on 3-12. Praying for a clean scan and to keep on keeping on.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    2019 and still kicking...

    Last scans in December, 2018...Griselda trying to make a comeback....AGAIN!  This is after two cyroablations.   Plus she send out a little scout to set up camp about an inch furthEr up my neck....grrrrr.  I was in to see the RO for my annual checkup, and he said he could get these two spots with SBRT....so in January I had that done....5 treatments over 10 days. Easy peasy!  Now we wait till the end of March for the next scan. 

    Since I have to wait, I’m taking a cruise to the West Indies with 3 girlfriends....ha!  Never put anything off....that’s what I say. 

    p

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    2019 and still kicking...

    Last scans in December, 2018...Griselda trying to make a comeback....AGAIN!  This is after two cyroablations.   Plus she send out a little scout to set up camp about an inch furthEr up my neck....grrrrr.  I was in to see the RO for my annual checkup, and he said he could get these two spots with SBRT....so in January I had that done....5 treatments over 10 days. Easy peasy!  Now we wait till the end of March for the next scan. 

    Since I have to wait, I’m taking a cruise to the West Indies with 3 girlfriends....ha!  Never put anything off....that’s what I say. 

    p

    Phrannie You ARE

    An Inspiration To Us All-God Bless-Safe Trip-Enjoy

  • Logan51
    Logan51 Member Posts: 466 Member
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    Almost 10 years

    First week in April will be my 10th Anniversay for NPC, unknown Primary, stage-3. Profile page gives tx data.