CLOSED ROLL CALL 2019 - FIRST UPDATE MARCH 3, 2019 CLOSED

CivilMatt
CivilMatt Member Posts: 4,698 Member
edited June 2019 in Head and Neck Cancer #1

PLEASE READ

ROLL CALL 2019

First UPDATE March 3, 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.

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.</spa

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,698 Member
    Here we go!

    Members,

    So far, many of my old friends have checked in to the ROLL CALL 2019.  I am not surprised by this, they were always there to help each other out when we were in the “depths of Head and Neck cancer”.

    I would also like to thank one of our new members ERomanO (member since September 2018) who helped me understand the depth of the CSN melt-down recently.

    If other H&N members lost their enrollment or check-in information in the ROLL CALL 2018  from July through December of  2018, please let me know and I will adjust the RC to be more accurate.

    Thanks,

    Matt

  • Logan51
    Logan51 Member Posts: 459 Member
    CivilMatt said:

    Here we go!

    Members,

    So far, many of my old friends have checked in to the ROLL CALL 2019.  I am not surprised by this, they were always there to help each other out when we were in the “depths of Head and Neck cancer”.

    I would also like to thank one of our new members ERomanO (member since September 2018) who helped me understand the depth of the CSN melt-down recently.

    If other H&N members lost their enrollment or check-in information in the ROLL CALL 2018  from July through December of  2018, please let me know and I will adjust the RC to be more accurate.

    Thanks,

    Matt

    Dave K

    Hello. I'm new, but oldWink. Will be 10 years since last Rad. session come the 1st week in April for stage-3 NPC w/unknown Primary. Noticed the two lymph nodes protruding from left side of neck a couple weeks before I turned 54 in 2008...then the diagnosis w/scans and wait...then the concurrent Cisplatin Chemo and Rads in 20 places/session x31, followed by only 5 places the last 4 sessions...And just turned 64 late last November without any return bouts with C! Forum helped me a lot way back when, with Delnative's advice on mouth and teeth issues, for instance, and Dawn when she was active. So, knowing how this Roll Call works, though I be oldWink, consider me enrollled as of now.

    And, for everyone in difficult time of tx, and wondering if you'll make it; or, to those just diagnosed- Believe you can and will survive. There are many who have survived H&N years longer than I have, and so will you...Believe.

    Dave K

  • wolfen
    wolfen Member Posts: 1,324 Member
    Hey, Matt!

    Wolfen(Karen) here checking in from mostly sunny Scottsdale, Az.  Tried to sneak away to Montana or Wyoming, but only in my dreams. Then I woke up. Dang!

    Slowly adjusting to being a lonely widow, but "it is what it is". I will always miss my husband and daughter. Cancer destroyed half of my family.

    Staying on the sidelines rooting and praying for each and every one of you as you fight the terrible Beast. NEVER EVER GIVE UP!

    Luv,

    Wolfen

  • cid817
    cid817 Member Posts: 58
    Checking in March 2019

     

    Hubby NED as of November 2018 PET scan. The 5 year mark! YAY!!!! Still having swallow issues. Doc did throat stretching and Botox in spring of 2018, but the botox did not work well which caused more swallow issues. Once the Botox wore off after a few months, things got a little better. Life is great! Hubby just retired and we are getting ready to cruise the USA in our new motorhome. 

    Positive thoughts and prayers to all.

  • Fritz
    Fritz Member Posts: 106
    March 2019 update

    Freddie here checking in approximately 3 years from initial diagnosis of what was Stage IVA tonsil cancer (old staging). Last official radiation/chemo treatment was 7/15/16.  Just concluded ENT visit this morning and visual with scope still shows NED.  Same long term issues as many others.  Thick saliva makes for a challenge but plenty of fluids on hand allows me to eat most anything.  Life is good every day you are able to arise.  For all those on this site, here's wishing you well.

  • Dazey
    Dazey Member Posts: 91
    checking in

    Very pleased to say I am still here, doing well, and continued NED.  I was diagnosed and treated the end of 2009, so the end of this October will be 10 years.   Best wishes go to all who are struggling with this disease.  There is hope, no matter what!

  • denistd
    denistd Member Posts: 597
    Supraglottic cancer

    Still Here, had a radical cystectomy last November, not for cancer but b;adder quit, took out ptostate as well. Doing good right now.

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Checking in

    Have not been on CSN much in the past few years, but did post earlier today. I had a g-tube placed about a month ago, to help get in more calories and reduce the risk of aspiration pneumonia (which I had in January).  The tube is doing its job, allowing me to gain back a few pounds, and feel a whole lot better in general.  The doc says the tube is a temprary trial, but I suspect I'll be keeping it for life.  My best to all on CSN.

    Mike

  • joannaw81
    joannaw81 Member Posts: 185 Member
    Hi guys

    With upcoming Mother's Day decided to check in to honor my mom- survivor- NED for 7 years and 2 months, so grateful for that. Very hard to belive after all the recuarrances that she had...for everyone out there, I know its hard, I know its painful however keep fighting, dont give up.

    Matt- you can update my city and state: Hackensack, New Jersey- thank you

  • okeydokey
    okeydokey Member Posts: 38
    checking in

    Rainelle Wv-Hubby's update--not doing well--cancer spread to lungs and bones--diagnoised june-2018--squamous cell carcinova--stage 4--35 radiations some chemo and keytruda which has been stopped due to his having pneumonia--still he will never ever give up till the end--now weighing 97 lbs-He really is an awesome warrior--still fighting

    Rita

  • CivilMatt
    CivilMatt Member Posts: 4,698 Member
    edited May 2019 #12
    RC Status

    Roll Call Participants,

    I see the “active H&N members” helping each other  in the H&N forum and I invite all of you to leave a note about yourself  and your H&N experience and how you are doing.  If you do that,  I will do the rest and see that it gets posted into the current Roll Call.  It doesn’t have to be much, just something for other members to see and (maybe) remember you from when you were active in the H&N forum.

    As I explained recently on here, I often wait till I get a number of responses before I  start an update and I think I will initiate the next update (very soon)  and we all can see where we are with the ROLL CALL 2019. So all you H&N members who happen to read this, feel free to drop me a note in the Roll Call or private message me and I will bring everyone up-to-date on you (on the  next update).

    Matt

  • stonestack
    stonestack Member Posts: 5
    edited May 2019 #13
    first post from a new guy

    Good morning all, happy holiday! Im Aaron from Utah. stage three base of tongue with hpv+.   just finished my third week of six currently in radiation. havent slept more than 3 hours at a time in about 4 days now. dry mouth and mucustitus prominent. been drinking Orgain protein mixed with almond milk for my only nurishment, also for about 4 days. enrgy levels dropping. cheeks and tongue feel raw from constantly rubbing on my teeth, and my ibuprophen are getting a little harder to swallow. lost six pounds since radiation started. right now just trying to focus on nurishment. my water bottle is my constant sidekick. glad to have a new community to lean on for feedback and support. I hope to contribute as well. 

  • Sunshine60
    Sunshine60 Member Posts: 81
    Roll call

    Have not been on the forum for quite some time- I care for my husband who originally was dx with SCC unknown primary, neck, in 2013.  He had surgery and rads,and all was great for approx 4 yrs. It came back in 2017, base of tongue.  Did robotic surgery as it was a small spot.   In November of 2018 he was dx again with BOT, stage 4.  Surgery included total removal of tongue, section of jaw, soft pallate. the tumor was very big and very aggressive. He now has a permanent feeding tube.  Despite this setback, he continues to be an amazing soul.  While he can no longer eat he continues to go to speech therapy and has learned to talk quite well!  I know that he must have hard days at times ( I'm still working) but he doesn't show it often.  He cooks for the family despite not being able to eat but says it's how he continues to stay connected with us all.   One of our grandchildren asked him the other day if he regretted doiing the surgery since he can't eat anymore.  He replied, " no, i wanted to live and we can adapt to whatever we need if we want it enough."

    So, we started this journey 6 yrs ago as an unknown primary and despite tx  had two reoccurances.   I'm not sure why some never get it again and others like us fight it more than once. I just know that he will carry on until he cannot.  I thank you all for your inspiring stories that have often kept me going as well, even though I was silent.    *Hugs*

     

  • Pclark21st
    Pclark21st Member Posts: 126
    Checking In for boyfriend,

    Checking In for boyfriend, Thomas.  Dx 12/15/17 Stage 3/4 tonsil cancer HPV +.  Was given 2/3 days to live, had emerg trach and Gtube.  Went through 40 rads and 3 Cisplatins. Hernia from coughing.  Wk in hospital from aspirated pnuemonia. Clear PET 6/8/18.  Trach and Gtube removed.  Clear 6 mos scan.  9 mos scan in Jan 2019 showed activity, confirmed with PET and biopsy at medialstinum.  Orig thought MET but decided local recurrence of downward growth of original tumor.  Had pleural effusion requiring drain tube during treatment.  35 Rads and 6 Cisplatins.  CT showed reduction of tumor.  Praying  for clear PET on 6/12/19.  Never giving up

  • Andy13460
    Andy13460 Member Posts: 115
    Checking in it's been a while

    14th of June still here nearly 2 years out of treatment now.