ROLL CALL 2018 - Updated January 1, 2018 CLOSED!! DO NOT POST HERE!

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Comments

  • nancytc
    nancytc Member Posts: 70 Member
    edited February 2018 #22
    checking in!

    Hi!

    I am excited to report that I am 10 months post treatment Right Tonsil and three lymph nodes Stage 4a, and doing reasonably well. Went through TORS robotic surgery to remove 4 tonsils and base of tongue resection, then 33 rounds of radiation and 2 mega doses of Cisplatin. Long term side effects suck, but are doable. Progress seems at a snails pace, but there is steady progress for sure. I love this group and check on everyones updates every couple of days. We are definitely a unique bunch. Love and prayers to all.

    Nancy

     

     

    Nancy

  • aak16
    aak16 Member Posts: 24
    #23
    Enrolling

    Ashley from Erie, PA here. 30 years old. Diagnosed with scc of the vocal cords in June 2017 after laser removal of some of the growths. Completed 29 radiation treatments in July-August 2017.  Radiation kicked my butt and while I had the summer off because I'm a teacher, I took 5 weeks off of work once school started at the end of August to recover.  My 3-month post-treatment CT scan was clear. Right now I'm 5+ months out and my problem is that my voice is very weak because my vocal cords aren't vibrating. A laryngologist told me there's no fix for it but we should wait until the one year mark to see if some fo the function returns after my throat has had more time to heal.

  • Curlyn
    Curlyn Member Posts: 189
    edited February 2018 #24
    Hi All, I joined Sept 11,

    Hi All, I joined Sept 11, 2017. Stage lll, HPV+, BOT primary (less than .19") with mets to lymph nodes in neck. Surgery and chemoradiation. After a year of watching had the neck surgery, BOT surgery a month later, 8 wks later the chemoradiation. 13 wks since treatment. Worst 17 months of my life! Will life get better? Who knows, I am not going to sit around to find out because enough time has been wasted. Going to meet it head on. Best of luck to all of you!

  • Billbo_Baggins
    Billbo_Baggins Member Posts: 2
    #25
    Hi

    I joined 13 February 2018 my name is Tom I’m from Friendship, Maine. I have stage IV hvp+ I’m done with treatments 35 radiation and 3 chemo. Wasn’t told about depression until it hit me last week so I called the nurse and got on some medication for it. Now I’m getting counseling and this is part of my healing process from the depression. I will share my story soon. 

  • Klingels
    Klingels Member Posts: 78
    #26
    Checking in

    Klingels- Kent is 7 months post treatment. He is back to work part-time. Still has feeding tube, but anticipates its removal in the next couple of weeks. He has little saliva and has developed neuropathy in his feet. Eating continues to be a challenge and he has trouble keeping weight on. Has lost bout 45 pounds. Otherwise, he is enjoying the sweetness of life and being with family.

  • Christmas
    Christmas Member Posts: 100
    #27
    Checking in for 2018

    Everything is fine, but still having lots of dental work.   The teeth are going fast!  Good thing that I can still work to pay all those dental bills.

    Fourteen year survivor!

     

  • Strawberry54
    Strawberry54 Member Posts: 4
    edited July 2018 #28
    Enrolling

    Marietta from Manitowoc, WI and snowbird in Panama City Beach, FL! I joined in March  2018. Diagnosed with SCC of tongue HPV+, in March 2018. Had 35 rads and 2 chemos. Last rad on May 16th. PEG tube came out the end of June. Lost 15 lbs and although I am holding my own, the weight is not coming back on. Am eating normally, but taste buds are at best 40% back and dry mouth is fairly severe. Of course, I am only 8 weeks post-rads, so I guess I am doing ok. Still have a sore soft palate. No PET scan until October. I will check back then.

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #29
    CHECKING IN

    Hi everyone. I'm from Alberta, Canada and I sure am glade that I discovered this forum. A wealth of information for people going through head and neck cancer/recovery. First diagnosed with neck cancer in March 2016, SSC stage 111, modified neck discetion in July 2016, 35 lymph nodes removed, modified radical neck discetion using left chest muscle to rebuild the left side of my neck, latest PET/CT scan noticed a nodule on the upper side of my right lung, follow-up CT scan confirmed a 5mm nodule. I am now scheduled for a CT scan with contrast on September 15, 2018. What I have learn't from this forum is to stay positive and not worry. Life has it's way of working out. Thanks to all for your input over this past 2 years. Much appreciated and I hope only the best for each and eveyone of you.

    Steve

  • Vicky1
    Vicky1 Member Posts: 2
    edited July 2018 #30
    I'm new here. Vicky from

    I'm new here. Vicky from Maine. My dad was diagnosed in February with verrcuous carcinoma in his mouth. He had a mandiblectomy and fibular free flap reconstruction at Mass Eye and Ear in May and is about to undergo 30 radiation treatments and 5 or 7 chemo treatments. Just stumbled upon this forum while searching for the best cream to buy for his radiation.

  • Vicky1
    Vicky1 Member Posts: 2
    #31
    Billbo_Baggins said:

    Hi

    I joined 13 February 2018 my name is Tom I’m from Friendship, Maine. I have stage IV hvp+ I’m done with treatments 35 radiation and 3 chemo. Wasn’t told about depression until it hit me last week so I called the nurse and got on some medication for it. Now I’m getting counseling and this is part of my healing process from the depression. I will share my story soon. 

    Hi Bilbo from Friendship!

    Hi Tom from Friendship! Vicky from an hour north of you in Midcoast Maine. Dad has cancer and is undergoing treatment.

  • wbcgaruss
    wbcgaruss Member Posts: 2,469 Member
    #32
    Joining the Roll Call 2018

    Long time reader and recently signed up as a member in the club nobody wants to be in.

    Name-Russell

    Location-Washington Boro, Pennsylvania

    First cancer in 2012 when I was 58 recently had second cancer,  just turned 65 in July

    First I would like to give honor to Hawvet who this is in memory of, he and those who traveled this journey

    before us and others like Kteacher and Longtermsurvivor.

    And a shout out and thank you to Matt for continuing it-Thanks Matt

     

    In late November 2012, I had a sore throat that would not go away.

    After 2 runs of antibiotics for 10 days each in which a sore throat

    would go away and then resume again after the antibiotics wore off so

    my family doc sent me to see an ENT.

    He did a scope job and said not good news you have a tumor in your throat.

    Confirmed as cancer with biopsy squamous cell probably stage 4 they wondered

    why I did not have some trouble swallowing.

    Starting January 1 they had my treatment plan all made, and treatment was started

    I had my mask and had many meetings and my treatment was started.

    Had the whole routine feeding tube, port, mask.

    I did 2 stints in the hospital for 5 days on 24-hour chemo with time between for blood count to build up.

    Then started a plan of 35 rads and chemo in the beginning middle and end of rads.

    At some point in this treatment, my Parotid gland got infected and I spent several days

    in the hospital on heavy antibiotics and the left side of face swelled up.

    I was transported by ambulance to not miss any rad treatments and had a difficult time

    with the mask as my face was swelled but a great rad gal talked and worked me through it. I owe her great gratitude what a blessing.

    All scans now show cancer free.

    Fast forward recently had sore on the bottom left of the tongue that would not go away.

    Back to ENT and he did a biopsy and confirmed cancer same type as before and diagnosed as stage 1.

    He says not a recurrence but another round of cancer.

    Operated on recently 6/21/18 recovering well mostly healed up and doing well. Lost very little tongue tissue.

    Always an avid reader of this forum I decided this time around to make it

    official and join in. SORRY to make this so long. New member but old reader so wanted to explain a bit.

    God Bless and Strengthen you in your journey and may cancer not darken your door step again.

    This is one great group of people sharing help and hope.

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #33
    wbcgaruss said:

    Joining the Roll Call 2018

    Long time reader and recently signed up as a member in the club nobody wants to be in.

    Name-Russell

    Location-Washington Boro, Pennsylvania

    First cancer in 2012 when I was 58 recently had second cancer,  just turned 65 in July

    First I would like to give honor to Hawvet who this is in memory of, he and those who traveled this journey

    before us and others like Kteacher and Longtermsurvivor.

    And a shout out and thank you to Matt for continuing it-Thanks Matt

     

    In late November 2012, I had a sore throat that would not go away.

    After 2 runs of antibiotics for 10 days each in which a sore throat

    would go away and then resume again after the antibiotics wore off so

    my family doc sent me to see an ENT.

    He did a scope job and said not good news you have a tumor in your throat.

    Confirmed as cancer with biopsy squamous cell probably stage 4 they wondered

    why I did not have some trouble swallowing.

    Starting January 1 they had my treatment plan all made, and treatment was started

    I had my mask and had many meetings and my treatment was started.

    Had the whole routine feeding tube, port, mask.

    I did 2 stints in the hospital for 5 days on 24-hour chemo with time between for blood count to build up.

    Then started a plan of 35 rads and chemo in the beginning middle and end of rads.

    At some point in this treatment, my Parotid gland got infected and I spent several days

    in the hospital on heavy antibiotics and the left side of face swelled up.

    I was transported by ambulance to not miss any rad treatments and had a difficult time

    with the mask as my face was swelled but a great rad gal talked and worked me through it. I owe her great gratitude what a blessing.

    All scans now show cancer free.

    Fast forward recently had sore on the bottom left of the tongue that would not go away.

    Back to ENT and he did a biopsy and confirmed cancer same type as before and diagnosed as stage 1.

    He says not a recurrence but another round of cancer.

    Operated on recently 6/21/18 recovering well mostly healed up and doing well. Lost very little tongue tissue.

    Always an avid reader of this forum I decided this time around to make it

    official and join in. SORRY to make this so long. New member but old reader so wanted to explain a bit.

    God Bless and Strengthen you in your journey and may cancer not darken your door step again.

    This is one great group of people sharing help and hope.

     

    Russell

    Russell,

    Just what are doing in this closed Roll Call Post?  Did you see the CLOSED  with the DO NOT POST HERE label?

    Usually, Edits to the Roll Call happen at updates, but I have made your edits now.

    Matt

  • wbcgaruss
    wbcgaruss Member Posts: 2,469 Member
    #34
    CivilMatt said:

    Russell

    Russell,

    Just what are doing in this closed Roll Call Post?  Did you see the CLOSED  with the DO NOT POST HERE label?

    Usually, Edits to the Roll Call happen at updates, but I have made your edits now.

    Matt

    Yes I Understood

    Yes, I understood it was closed. I apologize sincerely if I was severely remiss by editing. I respect you and all you do for the folks here you are a great guy with a big heart and give a lot of your personal time to this forum. Even though I had sent and requested changes to you personally about the roll call 2018 final, I went to the page in question and saw that I had the ability to still edit the changes there also as it was not restricted to editing on that posting and thought since it was not actually locked I would not be hurting anything adding to my Roll Call Profile 2018. Matt thank you for making the edits it is appreciated. Again I sincerely apologize and will do my best to follow forum decor. Russ

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #35
    wbcgaruss said:

    Yes I Understood

    Yes, I understood it was closed. I apologize sincerely if I was severely remiss by editing. I respect you and all you do for the folks here you are a great guy with a big heart and give a lot of your personal time to this forum. Even though I had sent and requested changes to you personally about the roll call 2018 final, I went to the page in question and saw that I had the ability to still edit the changes there also as it was not restricted to editing on that posting and thought since it was not actually locked I would not be hurting anything adding to my Roll Call Profile 2018. Matt thank you for making the edits it is appreciated. Again I sincerely apologize and will do my best to follow forum decor. Russ

     

    what am I going to do?

    Russell,

    You may do whatever you want to do, but I will not normally go back into a closed post and retrieve information.  Once I say CLOSED or DO NOT POST, then I am finished with that post, done, end of subject.

    If I leave the keys in my car, are you going to drive it around since I did not lock it or take the keys?

    A couple of more experiences like this with you and I may have to label you “High Maintenance”!

    Matt

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