Please post on Matt's thread :)

SuzJ
SuzJ Member Posts: 446 Member
edited February 2019 in Head and Neck Cancer #1

Please sound off, so we all know who's here.

I'm Sue, Oropharangeal in 2017 - not Superwoman as I origonally thought.

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Comments

  • ERomanO
    ERomanO Member Posts: 323 Member
    #2
    Topic title

    Hi Sue.  I think a more appropriate topic title, such as "Rolll Call 2019" would get more people to climb aboard.  You might be able to edit the topic.  Many may have lost their accounts completely, as I did and haven't made a new account yet.

    Eugene - Oropharangeal 2018

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #3
    Outage

    That's computers for you.  Such a shame losing valuable info.  Let's hope it doesn't affect too many members.

  • wbcgaruss
    wbcgaruss Member Posts: 2,468 Member
    #4
    I'm Here-Checking In

    I had Throat cancer in late 2012 read this forum heavily-a God send-like a support group every day instead of once a month with informed people going through what I was going through and even a doctor that was active and had cancer. Talk about having resources you can't beat it. Starting Jan. 2013 Had 35 rads and 3 chemo treatments including 2 chemo treatments of one week at a time in the hospital. Clear of cancer till the late spring of this year I figgered I was in good shape-almost 5 years out and got a small spot on the bottom of my tongue. I was lucky it was gotten early and only lost a small amount of tongue and had clear margins. That is when I joined CSN after the second occurrence I figured I am in the club now. Just want to help others if I can in any way. God Bless

     

  • caregiver wife
    caregiver wife Member Posts: 234
    edited February 2019 #5
    Caregiver wife

    ... checking in!

    Crystal

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #6
    Past Roll Call in July 2018

    Hello Sue, 

    Thank you for starting a Roll Call for 2019. I did a search to see if maybe some of the prior information was still around the site. Luckily there were several but this one is the latest that wasn't lost. CivilMatt's post in July of 2018 has some updates in August. You can view the information at this link

    https://csn.cancer.org/node/317137

    My apologies as I don't know how to make this a workable link

    My Best to You and Everyone Here

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #7
    Checking in

    Deb... tonsil cancer , treatments July- Aug 2017..had a tough time with  side effects, feeding tube,  and getting on with life in general. Hard to believe it's been almost two years! Still can't shake this feeling of waiting for the other shoe to drop!  

  • big G
    big G Member Posts: 177 Member
    #8
    debbiel0 said:

    Checking in

    Deb... tonsil cancer , treatments July- Aug 2017..had a tough time with  side effects, feeding tube,  and getting on with life in general. Hard to believe it's been almost two years! Still can't shake this feeling of waiting for the other shoe to drop!  

    I'm still here

    Diagnosed in Aug 2018 SCC bot- I had neck dissection,Tors surgery,33 IMRT tx.  I couldn't eat solids for 2 weeks after Tors surgery,took the rad  tx fairly well except the normal lost taste buds,dry mouth,etc. I now have about 80% taste buds back still have dry mouth and turkey neck but getting better. I have first C-T scan of the head, neck, and chest on 3-5-19. I can't say enough good things about this forum from the encouragement to the knowledge that I know helped me through my treatments. There are too many to name but you know who you are. THANK YOU!

  • swopoe
    swopoe Member Posts: 492
    #9
    I am here. My husband was

    I am here. My husband was diagnosed with stage 1 tongue cancer with perineural invasion in October 2015. He had surgery, radiation, and chemo (Cisplatin). He has been all clear (NED) since he finished treatment in January 2016. His cancer was HPV-, and my husband (who is 44 now) was never a smoker or a drinker. We live in Houston, TX.

  • Alpinelife
    Alpinelife Member Posts: 12
    #10
    Still here

    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.

  • MGC
    MGC Member Posts: 72 Member
    #11
    Still Here

    Still here and happy to be here. Suffering debilitating side effects from rads almost 9 years out Stage 4 SCC & BOT HPV+

    Ferocious radiation induced fibrosis causing severe trismus. No Fun but still fighting. Still NED and going forward.

    We need a longer term survivoir thread as to not clog up all the new threads as there are so many.

    Doing HBOT treatment now as a last ditch effort. They should make it mandatory for anyone doing rads early on imo.

    My radiologist did reccomend it a few years ago but I was stubborn and didnt want to take the time off work as there is no place close to me.

    Now I am doing it after 9 years.

     

  • MickeyD
    MickeyD Member Posts: 14
    #12
    New to Roll Call

    Diagnosed with squammous cell cancer of parotid in Nov, 2014.  Had to pull all teeth and then had 33 rad and 7 cicplatin.  Did well until Oct. 2016 when test showed cancer had grown and migrated to right side of jaw.  Surgery, followed by 30 more rad and 7 carboplatin and taxol.  Am doing well, but lately, the 63 rads have taken a toll on right side of face - hearing loss, wateriing eye, dry mouth or way too much saliva, swallowing problems, aspirating and presently using a PEG tube.  Possible problem - last brain scan showed some irregularities that are probably effects of raadiation but could be my old friend Mr. C.  Next tests in April should resolve things.  Dispite the radiation effects, I'm able to enjoy life and still have some fun.  

  • MrsBD
    MrsBD Member Posts: 617 Member
    #13
    Roll Call

    Here! It's been 4 1/2 years since my diagnosis. (BOT, never smoked or drank, HPV neg, just a genetic fluke) Just finished a refresher course for swallowing issues, some PT for neck stiffness, therapy for lymphedema and tweaking of medication for my damaged thyroid. Other than those inconveniences, I am busy and blessed! I won't ever forget the help of the CSN members during the rough spots! 

  • okeydokey
    okeydokey Member Posts: 38
    #14
    checking in--still here

    checking in--still here

  • yensid683
    yensid683 Member Posts: 349
    edited February 2019 #15
    Ditto!

    Still here, DX in March of '12, NED from March of '13, finished with regular appointments with the ENT, annual visits for check up. 

    Living the new 'abi-normal' life in central FL!

     

    Peter

  • phrannie51
    phrannie51 Member Posts: 4,716
    #16
    I’m still here....

    phrannie.....Kalispell, Mt.....been here a very long time, it seems....lol 

  • osmotar
    osmotar Member Posts: 1,006
    #17
    Checking In

    Hi all

    Quite some time since I’ve checked the site. Diagnised stage 4a SCC right tonsil,( non smoker or drinker)   , June 2011 , started treatment chemo Aug 2011 , rads Nova 2011 , ended all Dec 31,2011 ... 7 years and still going strong , no remaining major complications , still experience dry mouth . 

    Blessing to all 

    Linda - Buckeye , AZ

  • Barbaraek
    Barbaraek Member Posts: 626
    edited February 2019 #18
    Barbaraek

    Checking in. My husband is 3 years post treatment for stage 4 nasopharyngeal cancer. We’re Still cancer free but the radiation side effects have thrown us for a loop. Significant hearing loss and now vocal cord paralysis due to nerve damage. Feel like we are at another crossroads, need to make decisions. We have tried to make the most of the last 3 years , traveling, working and being grateful each day. Have to put on our battle armor again to deal with these new problems and possible tracheostomy.

    Barbaraek

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #19
    SuzJ,

    SuzJ,

    This is not the ROLL CALL 2019 I am working on.

    Have you replaced me?

    It sometimes takes me a while to update and post everyone’s (new and current) information.

    Please let me know what you are doing?

    Matt

  • ERomanO
    ERomanO Member Posts: 323 Member
    #20
    CivilMatt said:

    SuzJ,

    SuzJ,

    This is not the ROLL CALL 2019 I am working on.

    Have you replaced me?

    It sometimes takes me a while to update and post everyone’s (new and current) information.

    Please let me know what you are doing?

    Matt

    Sorry, I was the one that

    Sorry, I was the one that prompted her to update her thread title to Roll Call 2019 since she was looking to have members check in and it looked as though the previous roll call was lost (please read my first post).  I'm new here, so I don't know there is someone in charge or if its just a free for all or what. Your toes were not meant to be stepped on.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #21
    ERomanO said:

    Sorry, I was the one that

    Sorry, I was the one that prompted her to update her thread title to Roll Call 2019 since she was looking to have members check in and it looked as though the previous roll call was lost (please read my first post).  I'm new here, so I don't know there is someone in charge or if its just a free for all or what. Your toes were not meant to be stepped on.

    Keep up the information train for the H&N forum

    ERamanO,

    I appreciate the information about what happened.  I figured someone thought I had gone to the forum-in-the-sky, but I have not and furthermore I did not see anything about my demise on the forum (I do check). Phrannie51 or Skiffen16 are usually good members to ask about me.

    The reason for my concern is, there is a lot of work which goes into providing the ROLL CALL and to have someone simply (commander the ROLL CALL name, so to speak) is not cool. I know that DID NOT HAPPEN in this instance.

    I have provided all the H&N members with my explanation concerning my beloved (Is Matt weird) ROLL CALL.

    Also, I checked my records (I have a copy of all my responses) and I have written SuzyJ 10 times between April 2017 and January 2018. I have included an oldie-but-a-goodie herein of my second response to Suzy J, dated April 28, 2017, 9:11 pm:

     

    SuzJ,

    You are not going to die.  You need to survive for the next 2 months so that you can go back to not being a patient.  I always hope for the best for those beginning, but you never know how hard it will kick some people.  Remember, there are lots of meds available for nausea, pain, anxiety, etc.  I never liked the mask and had to take 1 Lorazepam each session, I came to find them interesting.  I went through 6 bottles of magic mouth wash; it was my savior for throat, mouth and tongue discomfort.  Additionally, I used numerous containers of silver sulfadiazine cream.  You find what works for you to help get you through and do it.

    Others here can share what they did and I would like to see you complete your treatment and move forward.

    Also, you must keep the nurses and doctors apprised of your troubles, they can help.

    Matt

     

    So, as you see I do care and I do apologize to her if she feels I over reacted.

    Finally, I liked the way you took on Ikanter about his 11 years cured of cancer.  These individuals show up on occasion.  Usually, you can tell it is a nut because they will put a few numbers before their name.

    Ok, I am done.

    Matt

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