ROLL CALL 2012 - CLOSED. NEW THREAD STARTED

13

Comments

  • GraceLibby
    GraceLibby Member Posts: 88
    #42
    Checking in!
    Had my one year post treatment check up in Nov 2011 and doing great! I have a bit of scar tissue build-up from the surgical site which was a little disturbing at first, but scans don't show any activity which is good news. Saliva is not the best, but I make do with what I've got. The worst is the constant tinnitus; thank you cisplatin. Other than that, so far so good!
  • Greg53
    Greg53 Member Posts: 849
    #43
    GraceLibby said:

    Checking in!
    Had my one year post treatment check up in Nov 2011 and doing great! I have a bit of scar tissue build-up from the surgical site which was a little disturbing at first, but scans don't show any activity which is good news. Saliva is not the best, but I make do with what I've got. The worst is the constant tinnitus; thank you cisplatin. Other than that, so far so good!

    Present....
    ...and accounted for - and doing pretty dang good! Thanks for doing this Hawvet! Always good to see everyone checking back in.

    Greg
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #44
    GraceLibby said:

    Checking in!
    Had my one year post treatment check up in Nov 2011 and doing great! I have a bit of scar tissue build-up from the surgical site which was a little disturbing at first, but scans don't show any activity which is good news. Saliva is not the best, but I make do with what I've got. The worst is the constant tinnitus; thank you cisplatin. Other than that, so far so good!

    Saliva ~ GraceLibby
    Keep thinking those positive thoughts...

    I still noticed saliva getting better well into my second year post rads...

    JG
  • Klynten
    Klynten Member Posts: 29
    #45
    KristynRuth said:

    Not new, but never enrolled!!
    Hello! I didn't realize I had never enrolled!

    Well I'm from TX, I was diagnosed May 5, 2010 with squamous cell carcinoma of a lymphnode, unknown primary. I underwent 7 weeks of radiation and 2 Cisplatin chemos. Finished treatments Oct 25, 2010 and am by most standards "cured" now!

    New and enrolling
    My name is Clinton, I'm from Washington State, newly diagnosed as of end of November 2011 with Stage IV Metastatic Squamous Cell Carcinoma with Unknown Primary. Getting ready to start 7 weeks of radiation with 2 cisplatin treatments. Treatments start next week, gettin all my dental work done now. I feel fine, just nervous and ready to start treatment so I can be done.
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #46
    HAWVET said:

    How to Enroll
    Thank you for asking. We started this list a few years ago. It is a voluntary enrollment for Head and Neck Cancer folks and you enroll on this thread. I noticed that H+N had a very high survival rate and the enrollment/reporting would provide incentive and good news on our survival to those checking in for the first time. I am sure that many of the 50 plus who failed to report back in are still around.

    There may be others who post in this section and unless they enrolled, I have not included their names. We welcome your enrollment. As noted, please include your state, date diagnosed, type of cancer, brief description of your treatment and your status. After you have enrolled, we hope you will check back in at least once a year even if you had left this forum. A brief statement that you are still around and doing okay would suffice.

    The date of enrollment will be different from date diagnosed. The enrollment date is when you checked in for the first time for Roll Call.

    There are two other threads you should be aware of. Sweetblood22 has a super thread that may answer many of your questions. Skiffin16 has a map pinpointing where we are located in this world. Check the map site shown below:

    http://tinyurl.com/86gpr42

    Enrolling, I think
    Mikemetz
    BOT (left) Stage 3+
    Mucoepidermoid
    Diagnosed February 2009
    36 rads, 3 chemo (Cisplatin)
    Joined CSN October 2011
    NED to date--next scan April 2012
    Currently being treated for ORN--otherwise doing very well
    zip code: 30033
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #47
    Sorry, I'm slow on the uptake
    Arkansas, SCC soft palate September 2011. Third cancer. Still in treatment.
  • RushFan
    RushFan Member Posts: 224
    #48
    longtermsurvivor said:

    Sorry, I'm slow on the uptake
    Arkansas, SCC soft palate September 2011. Third cancer. Still in treatment.

    Fantastic
    Fortunate to be doing very well.
    20 months post treatment (chemo/rads)with no recurrence-NED.

    I have gained 25 of the 35 lbs. lost during treatment. Saliva doing well, taste back to normal with the exception of sweets which are great at first...then after a few bites sweet taste fades. Energy level is great.

    Minor issues: My jaw still tightens up, tinitus is there but not bothersome and I take Levothyroxine daily for throid function. Need my biotene spray at night.

    Next scan in April and should graduate to every six months.

    BEST to all in 2012.
    Chuck
  • susan0803
    susan0803 Member Posts: 90
    #49
    RushFan said:

    Fantastic
    Fortunate to be doing very well.
    20 months post treatment (chemo/rads)with no recurrence-NED.

    I have gained 25 of the 35 lbs. lost during treatment. Saliva doing well, taste back to normal with the exception of sweets which are great at first...then after a few bites sweet taste fades. Energy level is great.

    Minor issues: My jaw still tightens up, tinitus is there but not bothersome and I take Levothyroxine daily for throid function. Need my biotene spray at night.

    Next scan in April and should graduate to every six months.

    BEST to all in 2012.
    Chuck

    Present and doing well
    Reporting in for my husband, Joe from Hampton, NJ.
    SCC of the left tonsil. Stage IV, mets to some lymph nodes
    Last treatment: 11/11/10
    Last doctor visit and report: 1/11/12, all news is good!! No scans needed in foreseeable future. Weight is back up. Eating almost normal, saliva just is a little down. Hearing loss and tinnitus still bad (from the Cisplatin) but a small price to pay for the otherwise clean bill of health!

    Thanks for keeping the roll call list up!!
    Suzanne
  • palmyrafan
    palmyrafan Member Posts: 396
    #50
    Enrollment
    Patient: palmyrafan (Teresa), husband (Neil) is my caregiver
    DX: 1994 Multiple Mengiomas (left optic nerve, carotid artery, all 4 main sinus cavities, optic nerve chiasm, skull base, left eustacian tube and bones in the left side of my face and jaw, and of course, the meninges (lining of the brain)
    Treatment: Sinus surgery 1993, Cleveland Clinic,
    Brain Surgery 1994, Cleveland Clinic,
    Radiation Therapy 1996, Cleveland Clinic,
    Sinus Surgery 1997, Cleveland Clinic
    Prognosis: Tumors have come back in all areas that were resected and radiated. Currently on W&W with upcoming sinus surgery. Have lost most all my hearing and they are trying to preserve my vision.
  • donnahamblin
    donnahamblin Member Posts: 47
    #51
    HAWVET said:

    How to Enroll
    Thank you for asking. We started this list a few years ago. It is a voluntary enrollment for Head and Neck Cancer folks and you enroll on this thread. I noticed that H+N had a very high survival rate and the enrollment/reporting would provide incentive and good news on our survival to those checking in for the first time. I am sure that many of the 50 plus who failed to report back in are still around.

    There may be others who post in this section and unless they enrolled, I have not included their names. We welcome your enrollment. As noted, please include your state, date diagnosed, type of cancer, brief description of your treatment and your status. After you have enrolled, we hope you will check back in at least once a year even if you had left this forum. A brief statement that you are still around and doing okay would suffice.

    The date of enrollment will be different from date diagnosed. The enrollment date is when you checked in for the first time for Roll Call.

    There are two other threads you should be aware of. Sweetblood22 has a super thread that may answer many of your questions. Skiffin16 has a map pinpointing where we are located in this world. Check the map site shown below:

    http://tinyurl.com/86gpr42

    Enrollment
    From Fairborn, Ohio, date diagnosed was 9/16/11. My husband Scott has stage 4 tonsil cancer, squamous cell carcinoma and is HPV positive. He has had 3 rounds of cisplatan and tax plus Fu5 for 5 days 24-7. Starting radiation tomorrow for 5 days a week 6 and a half weeks plus one day on chemo per week. Scott was also diagnosed with Parkinsons Disease in 2005 at age 45......Will this ever end?
  • donnahamblin
    donnahamblin Member Posts: 47
    #52
    sweetblood22 said:

    Checking back in.
    Had a scope and exam done 12/28/11, everything appears ok. January is my 3 year anniversary for my neck dissection. Still here.

    CONGRATULATIONS!!!!

    CONGRATULATIONS!!!!
  • oldpaint03
    oldpaint03 Member Posts: 27 Member
    #53
    palmyrafan said:

    Enrollment
    Patient: palmyrafan (Teresa), husband (Neil) is my caregiver
    DX: 1994 Multiple Mengiomas (left optic nerve, carotid artery, all 4 main sinus cavities, optic nerve chiasm, skull base, left eustacian tube and bones in the left side of my face and jaw, and of course, the meninges (lining of the brain)
    Treatment: Sinus surgery 1993, Cleveland Clinic,
    Brain Surgery 1994, Cleveland Clinic,
    Radiation Therapy 1996, Cleveland Clinic,
    Sinus Surgery 1997, Cleveland Clinic
    Prognosis: Tumors have come back in all areas that were resected and radiated. Currently on W&W with upcoming sinus surgery. Have lost most all my hearing and they are trying to preserve my vision.

    Enrollment
    Patient: Husband, Jack
    Diaganosed with stage 4 SCC BOT with nodes on both sides of neck in Oct. 2010.
    Treatment 7 weeks of chemo, plus 35 rad. treatments. Completed Jan. 15 2011.
    Treatment was done by Huntsmans Cancer Center at Central Utah Clinic in Provo Utah.
    Progmosis: Has had 3 Pet scans that are all clear for Cancer, But having problems with blood clot in jugular vein. Also Nerve damage to neck and other areas where the treatment was done.
    Still fighting and taking things one day at a time and still unable to return to work due to dizziness.
  • RJC-still-vertical
    RJC-still-vertical Member Posts: 14
    #54
    RJC-still-vertical, Illinois, originally diagnosed June 1991 with squamous cell at the base of the tongue, Non-operable chemotherapy and radiation. attempted to register with Roll-Call Jan-14-2012, Enrolled with CSN 14Jan2012. Long term survivor and no recurrence, however now issues from the complications associated to the original treatments and radiation (compete deterioration of the throat mussels, Larynx, Epiglottitis, Esophagus, Sphincter). NPO (No food or fluids orally) Gastic Tube (GTube) insertion in the stomach now for all Nutrition, Medication, and fluids.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #55
    Checking In
    Hubby Pat still doing well 27 months out from radical neck dissection and chemoreirradiation for supraglottic cancer. Now in treatment for CLL (chronic lymphocytic leukemia). Prayers are welcome!

    Myka
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #56
    luv2cut1 said:

    Checking In
    Hubby Pat still doing well 27 months out from radical neck dissection and chemoreirradiation for supraglottic cancer. Now in treatment for CLL (chronic lymphocytic leukemia). Prayers are welcome!

    Myka

    Thoughst and Prayers
    Hy Myka.....

    You have my thoughts and prayers....you get your hubby through this ordeal too...horses are a waitin.

    Always,
    John
  • Glenna M
    Glenna M Member Posts: 1,576
    #57
    Skiffin16 said:

    Thoughst and Prayers
    Hy Myka.....

    You have my thoughts and prayers....you get your hubby through this ordeal too...horses are a waitin.

    Always,
    John

    Checking in....
    Glenna M, New Hampshire - Diagnosed May '09 SCC Laryngeal and NSCLC Adenocarcinoma in left lung.

    Just finished chemo, carboplatin/taxol and waiting to start a clinical trial with Sinutinib soon for reocurrence of NSCLC that is now in both lungs.

    No problems with the laryngeal cancer after 2 and a half years...woo hoo!!


    Still hanging in there and still fighting!!!

    Glenna
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #58
    STILL HERE AND STILL GOOD TO GO
    Almost 15 months NED since treatment ended for Stage 4B SCC of Right Tonsill with Mets to 23 Lymph Nodes. Just survived a week long vacation with the family at Disney World in Florida.

    Have my next ENT visit on Jan 25th.

    BEST!!

    Mike
  • Greend
    Greend Member Posts: 678
    #59
    Checking in
    greend
    Prattville Alabama
    Diagnosed March 1996
    SCC Right Tonsil
    Still above ground and enjoying life
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #60
    Greend said:

    Checking in
    greend
    Prattville Alabama
    Diagnosed March 1996
    SCC Right Tonsil
    Still above ground and enjoying life

    All Present and accounted for!!!!!
    :)
  • rascal52
    rascal52 Member Posts: 2
    #61
    HAWVET said:

    How to Enroll
    Thank you for asking. We started this list a few years ago. It is a voluntary enrollment for Head and Neck Cancer folks and you enroll on this thread. I noticed that H+N had a very high survival rate and the enrollment/reporting would provide incentive and good news on our survival to those checking in for the first time. I am sure that many of the 50 plus who failed to report back in are still around.

    There may be others who post in this section and unless they enrolled, I have not included their names. We welcome your enrollment. As noted, please include your state, date diagnosed, type of cancer, brief description of your treatment and your status. After you have enrolled, we hope you will check back in at least once a year even if you had left this forum. A brief statement that you are still around and doing okay would suffice.

    The date of enrollment will be different from date diagnosed. The enrollment date is when you checked in for the first time for Roll Call.

    There are two other threads you should be aware of. Sweetblood22 has a super thread that may answer many of your questions. Skiffin16 has a map pinpointing where we are located in this world. Check the map site shown below:

    http://tinyurl.com/86gpr42

    enroll 2012
    Michigan
    diagnosed 9-19-09
    SCC of the neck unknown primary
    TxN2amoIVa 1-11-12 NED God is Good

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