ROLL CALL 2016 - UPDATED June 27, 2016 (CLOSED)

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  • Tanager75
    Tanager75 Member Posts: 89 Member
    edited August 2016 #22
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    Check in

    i have been remiss about checking in on the roll call. I have been in remission since 2009.  i still have side effects from treatment but able to enjoy life! 

    Peace, Mark 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited August 2016 #23
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    Dazey said:

    July 2016 check in

    It has been seven years since diagnosis.   Wow, what a journey!   I am doing very well with no recurrences.   I do have annoying post treatment issues that are a constant reminder of this journey.   I completed my treatment the end of October 2009.   I am very grateful for all I have and can live with the post treatment issues.   I have major dental issues since tx.   - Full upper and we are working on the best pathway for lowers this month.   I occasionally have difficulty chewing and swallowing - absolutely nothing spicy!    Food is definitely not a highlight which is okay since I can no longer smell or taste.   The only thing I can actually smell is Pine Sol........my house is really clean!

    After testing, the neurologist was unable to find out a reason for these losses and told me I just have bad luck.   I prefer to think I have great luck and am very happy to have survived the dx and tx.  

    Good wishes for all who are starting this path and those that are looking back on the journey.

    Dazey

     

     

    1 more checked in

    Dazey,

    Thanks for taking the time to respond.  I really like to hear from the members in your time slot.  It provides some good incentive to the newer members.

    Are you from New York City or New York State?

    Matt

  • janich
    janich Member Posts: 12
    edited August 2016 #24
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    checking in

    I am a new member, Aug. 2016. Diagnosed with squamous cell cancer of right maxilla and had surgery Jan. 2014 to remove 1/4 of mouth and soft/hard palate on right side. 26 lymph nodes removed March 2014. Recurrence May 2014. Radiation, chemo, and 2 hospitalizations from June thru Oct. Had feeding tube due to severe mucositis for 19 months, June 2014 to Jan. 2016. Final obturator Jan. 2016, have been on soft diet since then. Still dealing with some mouth pain and taking opioids. I'd like to talk to others who have an obturator. I'm a Christian, and I'm grateful to God for carrying me through this hard time and for all the support from friends and family. I'm writing a book about my experience.

    Blessings,

    Jane

  • Dazey
    Dazey Member Posts: 91
    edited August 2016 #25
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    CivilMatt said:

    1 more checked in

    Dazey,

    Thanks for taking the time to respond.  I really like to hear from the members in your time slot.  It provides some good incentive to the newer members.

    Are you from New York City or New York State?

    Matt

    location

    I am upstate - in the Catskills.   Very pleased to be seven years out 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #26
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    doing fine at 3 years post

    Crossed the 3 year post mark in June 2016. Doing great and living large everyday!

  • Nanny2A@gmail.com
    Nanny2A@gmail.com Member Posts: 1
    #27
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    Signing up

    New member, female, age 64, diagnosed with SCC of right tonsillar pillar after small tumor, (less than 2 cm), was found in July.  Stage IB according to charts, (TIS/NO/G3).  I had radical resection of the tonsillar pillar sugery on July 25 to remove the tumor.  Ct-scan showed that this was the only area affected and that neck, lymph nodes and chest are clear.  Biopsy taken at surgery said surgical margins were free of carcinoma but peripheral margins involved by SCC in situ, so radiation therapy is being scheduled within the month after throat is completely healed from surgery.  No chemo, however. Would love to know more about radiation from real people, with information on side effects and how to best deal with them.

  • jtl
    jtl Member Posts: 456
    edited September 2016 #28
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    Check In

    It has been 5 years and so far so good.  Still getting CT chest scans which I recommend for everyone.  I had a very small spot on my lung that was deemed insignificant but a a follow up this fall is in the cards.  I also had bladder cancer which I don't think was realted to this.  It was treated and not problems since. I have zero side effects and have full taste and saliva.  I had the traditonal rads and the Erbitux when it was hardly heard of.  I have zero side effects and have full taste and saliva.   I was thinking in my life of 70 years I have had melanoma (50 years ago), prostate cancer 15 years ago, scchn 5 years ago, and bladder cancer a year ago.  I would say that is enough for this life.  Take care and be well.

    John

  • Fritz
    Fritz Member Posts: 106
    #29
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    Add to Roll Call

    (Freddie) Warner Robins, GA. Joined June, 2016. Diagnosed March 1, 2016 with Stage IVA Tonsil Cancer (T2N2aM0) with spread to base of tongue ,soft palate and nearby lymph node. Surgery on April 20, 2016 to remove tumor and both tonsils as well as modified radical neck dissection to remove 24 lymph nodes on tumor side. Began Cisplatin infusions along with 33 radiation treatments on June 1, 2016. Finished all treatments on July 15, 2016.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    edited September 2016 #30
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    Debbiejeane, still alive and

    Debbiejeane, still alive and doing ok for the most part.  No health problems except depression.  Somedays worse than others.  This is a great place to be so if you've found your way here, you're in good hands.  I don't check in much any more but the people on this site are always in my prayers, even if i don't know you.  God bless you and make you cancerfree!!!

    Sincerely,

    Debbiejeanne

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #31
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    Hondo said:

    Forget me Not

     

    Still here and still alive, came down with some Pneumonia again but that is due to not being able to swallow. Feeling like crap but that is all part of live.

     

    Tim Hondo

     

    Get better

    Can't forget you Tim.

  • MemphisTn
    MemphisTn Member Posts: 41
    #32
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    Add to roll call

    First off, please feel free to Enroll name, town, state, dx:

    Paul

    Memphis, Tn

    Adenoid Cystic Carcinoma Aprl 29, 2016 after removal of sub-mandibular gland was found to be cancerous. Completed 35 rads (66 Gy to primary site (surgical bed) and 56 Gy to surrounding neck at West Cancer Clinic in Memphis Tn via IMRT, right side only. Recieved chemo week 1 and 2. Completed radiation 8/31/2016. Current side affects include sore throat, swallow pain on right side, sharp pain at tongue base/right side of tongue, high mucous production (lots of spitting) mostly at night, dry mouth during the day, especially when trying to carry on a conversation, burn on neck of course and the 'mystery fatigue' I have read so much about. Diet has been exclusively Ensure Plus and water since about week 3. Lost about 30 lbs, but continue to drink/swallow on my own. Current pain med is basically 5mg/325 oxycodone/acetaminophen every 8 hours, 2 days being off of fentanyl patch (25mcg/hr). Use 'magic mouth wash' prmarily at this point to curb mouth pain in order to drink Ensure via straw. Worried sick of course about recurrance/mets but, radiation has given me a whole new set of issues to focus on for the moment. Hoping that soreness and swelling in mouth/throat will sub-side in the next couple weeks, less concerned about taste, more concerned that the sores wont go away, the sores, for me, make the idea of eating, a near impossibility. Thankful for many many people in and out of my church who have and are praying relentlessly for me. My prayer and goal is of course, to be able to live to enjoy my kids and retirement with my awesome wife. God willing : ) Have been lurking for a while, saw the role call and thought, may as well. Not much info on ACC as it is, willing to share what little I know.

    -Paul

  • Sandraw
    Sandraw Member Posts: 40
    edited September 2016 #33
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    Roll call

    From Oklaboma.  Dx NPC Stage 3 Dec 2015, 33 daily IMRT, 7 weekly concurrent Cisplatin and had 2 of 3 adjuvent cisplatin 5fu 96 hour infusions. NED July 18 2016 pet scan!  Back to work 8/26/16. Fatigued, neck lymphedema, dry mouth but still here and doing my best!  Thanks everyone here for sharing your stories, you give me hope. 

    I

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