ROLL CALL 2013---CLOSED AS OF 01/12/2014. New list to be posted

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Comments

  • HAWVET
    HAWVET Member Posts: 318
    Hondo said:

    Hi Jimbo

    Glad to hear you are doing well my friend. Great looking picture keep up the good work and may God bring you a blesssing everyday.

     

    Tim Hondo

    All - thank you for the updates

    Thank you to all for posting.  Please continue to enroll or update.  I will eventually update the listings.  At present, am trying to determine a simpler method to update the master list.  Aloha

  • KTeacher
    KTeacher Member Posts: 1,103
    HAWVET said:

    All - thank you for the updates

    Thank you to all for posting.  Please continue to enroll or update.  I will eventually update the listings.  At present, am trying to determine a simpler method to update the master list.  Aloha

    Still here

    Thank you Vet.  I am still here.  Just finished a third go around, this time I had chemo along with radiation. 

    KTeacher, Merced, CA.  Aug. 2010, upper right lip, scc; surgery, 1 inch of lip removed followed by radiation.

    July, 2011  Left neck dissection followed by radiation.

    Nov. 2012  'C' traveled up nerves in cheek to optic nerve.  Right eye removed followed by chemo and radiation.  This time I will retire.  I should change my login from KTeacher to Pirate Grandma, arrh.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Jimbo55 said:

    Checking In
    Jimbo55 checking in fresh off a clean PET/CT scan over the weekend. That makes 2 years and 7 months since the end of tx. Life is good. Cheers.

    Jimbo, so glad to hear your

    Jimbo, so glad to hear your good news.  This is what we live for.  Prayers are with you to always b c-free.

    God bless,

    deb

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Still here

    MikeMetz, Decatur, GA.  Dx MEC BOT in February 2009.  NED for almost 4 years.  Next scan in April 2013.  Hopefully over the hill with ORN symptoms--nothing new for several months now.

  • Netracer61
    Netracer61 Member Posts: 14
    Checking in and still fighting

    Diagnosed ENB dura breach , chemo, radiation, surgery 2001

    Reoccurance and radical neck dissection , tomotherapy 2005

    ENB reoccurance , cheek, eye , surgery, vision damaged. 

    ENB reoccurance,  optic nerve, left eye, sinus, surgery currently under going  Protron Beam Therapy at HUPTI in Hampton Virginia.

  • Roar
    Roar Member Posts: 269 Member
    Enroll me

    I'm in- unknown primary- 37 rads- 3 cisplatin partial neck dissection 

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Roar said:

    Enroll me

    I'm in- unknown primary- 37 rads- 3 cisplatin partial neck dissection 

    Tim6003 Still here!!!

    BOT stage III w/ one lymph node HPV+. Dx October 2011 ..last tx January 2012.  McCall, Idaho! Plan on being around till I"m 101 years old, thanks to my Lord, doctors and family.

    Best,

    Tim

  • Chucka21
    Chucka21 Member Posts: 1
    enrolling

    Not sure if this is where to do it or not but... Here I am.. Gald to be here great site that gives us hope.

    From Vine Grive, KY, 

    Squamous cell cancer, unknown Primary.  DX date Feb 21, 2013. Modified Neck Disection Mar 5, 2013.  Tonsilectomy April 14 2013.

    Started Rads May 15 2013, Going to have 25 treatments of Electron Beam. 

  • Sheilarhc
    Sheilarhc Member Posts: 46
    Enrolling

    Chicago Illinois, 42 yr old single mother of two.  Diagnosed- Hemangiopericytoma (in left cheek) October 2006 (9 months after my divorce).  Tumor removal October 2006, 35 Rads, no Chemo. Post radiation dental problems, no saliva but grateful that salagen works well for me.   I’m a bit shy so I don’t comment too much but I do follow forums often.  Have found great comfort and tons of information on this sight.  There are so many inspirational and wonderful people here, God Bless all of you…..

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Thankfully, I'm here

    Tracy, 40 years old

     

    MEC, 4 cm tumor removed 3/2013 which unfortunately had to mean removal of several teeth and 1/4 of my jaw.  2 surgeries and 30 rad treatments.  Halfway done with radiation right now, no chemo.

     

    Thankful to God for bringing me through this journey and never leaving me!

  • phrannie51
    phrannie51 Member Posts: 4,716

    Thankfully, I'm here

    Tracy, 40 years old

     

    MEC, 4 cm tumor removed 3/2013 which unfortunately had to mean removal of several teeth and 1/4 of my jaw.  2 surgeries and 30 rad treatments.  Halfway done with radiation right now, no chemo.

     

    Thankful to God for bringing me through this journey and never leaving me!

    Wow...I've never enrolled....LOL

    phrannie from Kalispell, Mt.  Dx'd March 2012 with Stage III NPC, bilateral lymph nodes involved.  35 rads, 3 Cisplatin treatments, then 3 Cisplatin/5FU treatments after rads were done.

    p

  • wolfen
    wolfen Member Posts: 1,324 Member

    Wow...I've never enrolled....LOL

    phrannie from Kalispell, Mt.  Dx'd March 2012 with Stage III NPC, bilateral lymph nodes involved.  35 rads, 3 Cisplatin treatments, then 3 Cisplatin/5FU treatments after rads were done.

    p

    Think I Forgot To Enroll

    Wolfen from Scottsdale, Az., spouse & caregiver to Ron, who was diagnosed October 2012 with Stage IV Squamous Cell H&N, BOT, Nasopharyngeal  w/lymph nodes & secondary primary of Adenocarcinoma Left Lung. Unfortunately, Ron lost his valient battle on May 5, 2013 after completing 10 lung rads & only 2 chemo infusions.

    I am also the mother of Johnnybegood from the Colon Board an almost five year Stage IV fighter and survivor diagnosed in September 2008 with Colorectal Cancer w/ liver and lung mets. Four surgeries, 28 rads, & too many chemo sessions to count. She will be on chemo for life.

    Wolfen 

  • Tia Y
    Tia Y Member Posts: 4
    Esthesio recurring again!

    i joined CSN july2012 after newly diagnosed with ENB. I had surgery 9-25-12 at UAMS Little Rock AR & they removed 2 very large tumors. Drs also cut out my nose so i have a 4inch deep hole in my face. I did 3months of radiation and chemo which ended in Jan2013. I was ready to get my PET & be declared cancer free! Then i could begin the face reconstruction & get rid of this awful (but valuable) prosthetic piece they made to keep all my bones&tissues from collapsing into the hole while i went thru treatments.

    Yeah... well no--not happening. In March2013 i had 2 new tumors pop out on my scalp. Biopsy confirmed my ENB had moved from left to right side of my head. Those tumors grew FAST FAST..in 4 weeks had gotten to nickel size diameter.  I had surgery 4-29-13 & am recovering. Unfortunately....i just found ANOTHER NEW TUMOR on top of my head and will get a biopsy tomorrow.  Already set up to begin another  radiation and chemo set on Monday & will see what the biopsy will alter or add to those plans.  

    I must say...i feel very overwhelmed. I am angry, hurt and in awe at what cancer can do.  I lost my smell forever, my taste sucks...even today (& i am a foodie!) and i just found out that now when i get the radiation....i will have permanent bald spots on my scalp. Its not enuf that i lost my nose-- but the opening still drains-alot, my left eye drips tears constantly, now my right eye and ear droops from the newest surgery, and now the permanent hairloss in at least 2 places.   I am a woman and i am attached to my hair--alot! It was 4feet long b4 i got cancer.  Yes i donated it.  i donated 27inches less than 12months b4 my cancer dx and b4 i started trx, i donated another 3feet. I am ashamed that i am feeling so vain on top of all the other feelings.

    My biggest worry right now--more than the baldspots....just where else can this ENB go?  where else should i be checking?  

    also...how to i enroll to your member list.  This is the first time i have posted even tho i joined csn last year.

    It helps so much to read others who are experiencing similar problems.  Blessings and prayers to all.

    If anyone wants to see photos of my journey.....i keep postings on my Facebook page.    <facebook.com/tiayatsko> 

  • sabriene
    sabriene Member Posts: 28
    Duggie88 said:

    My enrollment

     Jeff from Bernville, PA.  Diagnosed with stage 4 throat cancer November 22, 2009 after a biopsy locally I was sent to Philadelphia to the Hospital at the University of Pennsylvania for surgery on December 18,2009 where they took out part of the base of my tongue, epiglottis, uvula, and some lymph nodes on the left side of my neck. Radiation from February 16, 2010 through March 30, 2010 at the HUP.  Although when I played basketball in high school we weren’t allowed to slam dunk, I finally got to do so to cancer allowing me to be late for my funeral. Now I enjoy today and look forward to tomorrow.

     

    University Of Penn Hospital

    Duggie 88

    Not on here a lot anymore but just happen to notice the hospital you had surgery and treatment.  Glad to hear your doing pretty well overall.  Reason I was interested I was there the first part of 06.  I had almost the same problems as you and surgery to the left side of my neck.  Also, some lymph nodes removed and it was on both tonsils. I live in Branson, Mo. and my sister was a registered nurse living in South Carolina.  She called to inform me there a doctor using robtic laser surgery now in that hospital to remove a tumor at base of tongue.  Make a long story short I flew back for an opinion. They informed if I proceeded with this type of surgery I would have been number like 52 at that time. I was of course a little gun shy of it all which is normal.  They checked it all and took a lot of time for was there the better part of a day.  Conclusion was they felt maybe the tumor was a little to large at base of tongue and felt maybe my best shot was to proceed with just rad. & chemo.  They even took the time to check where I was planning here to have that treatment and visited with them which I sure appreciated. Treatment all went well here with the rad. & chemo until it all actually really kicked in.  The rad. was done by external beam and they warned me it would not be easy.  Actually, some of the recovery was living hell, and getting use to that peg tube took awhile.  Today still have problems with eating but can eat some items but mainly live yet on a soft diet.  Wonder how your doing with speaking for talking still is a problem.  Teeth were a major issue for the rad. doctor wanted them all removed but the oral surgeon said "healing would take in his situation to long and he needs to start treatment now".  I had all kinds of problems with the teeth, and lost the molars but still have some teeth at a very expensive price.  How have you gotten along if you still have them to date? 

    It sure has crimped my social life, and that I deal with but just glad to be alive.  Must say I now have a different outlook on life but most of time stay pretty positive.  I think ones needs to keep as active as possible.  That is hard to do if one has been use to keeping busy for it sure is very important.

    Like they say rad. & chemo is a gift, but seems it just keeps giving. 

    Wish you the best, Roger

  • CLRRN
    CLRRN Member Posts: 127
    Still here

    I know it's been a LONG WHILE since I visited this page and I apologize. As a reminder I joined this page on behalf of my partner, Mike.

    Good news is he is 3 years post treatment (diagnosed w/Stage 4 tonsil cancer Feb/March 2010). I am pleased to report that he is doing well. He developed "hoarseness" about a year post treatment and it has stuck around. It can be frustrating at times for him but thankful he is still around. He now sees ENT and ONC every 6 months. Unfortunately the radiation has taken a toll on his teeth and we are dealing with that now but again, remains NED.

    Good bless to all,

    Chris

  • Kimba1505
    Kimba1505 Member Posts: 557
    CLRRN said:

    Still here

    I know it's been a LONG WHILE since I visited this page and I apologize. As a reminder I joined this page on behalf of my partner, Mike.

    Good news is he is 3 years post treatment (diagnosed w/Stage 4 tonsil cancer Feb/March 2010). I am pleased to report that he is doing well. He developed "hoarseness" about a year post treatment and it has stuck around. It can be frustrating at times for him but thankful he is still around. He now sees ENT and ONC every 6 months. Unfortunately the radiation has taken a toll on his teeth and we are dealing with that now but again, remains NED.

    Good bless to all,

    Chris

    A BIG Howdy to folks new to the boards and old!!!

    Like CLRRN, Chris, it has been quite a while since I have been on the boards.  To all of you who remember me, you know the recent Michael Douglas story got me back here checking on the chatter!!  So much admire his bravery for putting out the truth like he has!!  Thank you Michael!

    As for Mark...he is doing great!!  For those of you who don't know us, Mark was diagnosed on April 13th 2010 with stage IV squamous cell carcinoma HPV+.  He finished treatment on Juyl 20th 2010.

    He lives a mostly normal life...eats what he wants, drinks what he wants, works, plays...  Lasting effects: strong muscle spasms in his neck as a result of losing muscle in the radical neck dissection, and increasing intolerance to the cold. We live in PA.  His weight is back to normal, and he sometimes pats his belly wondering if he needs to take off a couple of pounds.  He asks me if he is symmetrical...and I have to honestly answer him that he is not.  His scars and bit of missing neck are constant reminders of the tremendous strength he exhibited in that battle just 3 years ago.

    Our journey thorugh cancer, its treatment, and its ever haunting presence has had a powerful effect on our lives.  We don't for a minute forget that time, and I can honestly say we have been strengthened in many ways.

    I am happy to see some familiar names still posting here and am sad to see the passing of Glenna.  I think of DelNative everytime I visit Bethany or Rehoboth Beach in Delaware.  Both were leaders on this forum and helped me care for Mark.  I am forever indebted to them.  God Bless!!

    BEST BEST WISHES to you ALL!!!

    Kimba

  • CherieLW
    CherieLW Member Posts: 472
    Enrolling for my dad, Steve

    Enrolling for my dad, Steve  From Lancaster, Ohio.  He is 65, recently diagnosed with cancer of the sinus w/one affected lymph node. He started his first out of 3 chemo trtmnts on 6/3/13. Begins 35 radiation trtmnts on 6/5/13. 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Noellesjim

    Dx inoperable late stage hypopharyngeal and BOT cancer with lymph node involvement May 2010, treatment 3 rounds of Cisplatin, 37 daily rads.

    As of May 2013, Jim continues to be NED.

    Serious pain issues from the radiation and continues to be unable to work.  On multiple pain medications 24/7.  Has developed and is treating COPD as well as advanced osteoporosis with multiple spontaneous fractures.

    Alive and enjoying his life, thankful for NO CANCER!  Eats anything he wants and frequently pats his tummy to indicate maybe he needs to lose a few pounds - I think not!

    PTL!

  • backachedp
    backachedp Member Posts: 132

    Noellesjim

    Dx inoperable late stage hypopharyngeal and BOT cancer with lymph node involvement May 2010, treatment 3 rounds of Cisplatin, 37 daily rads.

    As of May 2013, Jim continues to be NED.

    Serious pain issues from the radiation and continues to be unable to work.  On multiple pain medications 24/7.  Has developed and is treating COPD as well as advanced osteoporosis with multiple spontaneous fractures.

    Alive and enjoying his life, thankful for NO CANCER!  Eats anything he wants and frequently pats his tummy to indicate maybe he needs to lose a few pounds - I think not!

    PTL!

    backachedp

    Wife of Bob dx 9=29-09 Robbinsdale MN treated ay University of MN Masonic Cancer Center.  Still goes in several times a month sometimes twice a week....just had Surgery May 20 and his swallowing has gotten worse... :(  Seems Bob is always having bumps in the road...threw his back out a week ago can't hardly walk choughing has gotten worse also from the Surgery...he says he can't get the stuff up anymore that is phlem...and he choughs so deep and hard it truly scares me.  I also worry about him having a Heart Attack from the Choughing so deep and hard but he was put on Blood Pressure Pills and it HAS helped!  That is a good thing, but he said after he hurt his back he does not know how i live with what has happened to my back when I was 38....I said Medication and a good Pain Dr I have seen for at least 11 or 12 years...he saved my life.  Bob said the back pain is worsse than the "C" but I don't believe it as I saw what he went thru....he is just sick and tired of being sick and tired...and I understand it....someday he will be better aanother swlllow test upcomming....guess this was not the place to post my long thread but I write when I can connect,,,

    Bless all of you!

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    Ruben and Jude: currently La

    Ruben and Jude: currently La Palma, CA (hopefully back to Medford, OR someday, we'll see) Being treated exclusively at the Veterans Administration Hospital, Long Beach, CA. Dx left tonsilar cancer stage 4 to left lymph node, HPV+ P16, determined by pathology of tonsils on March 21, 2013; tonsilectomy, PEG tube, 35 rads with concurrent Cisplatin chemo every 3 weeks; completed treatment 06/11/13. Still going thru side effects of chemo and rads, but is doing very well. Using PEG tube almost exclusively due to tongue issues, but they are beginning to resolve. Rarely drinks water due to mouth sores/pain from radiation. Had one minor bout of thrush at end of treatment, now resolved. Making saliva which at first was so thick he was gagging, now is thinning out. He's up everyday, showers and dresses. Takes frequent naps, gets 'a little grumpy' at times, is depressed, but calls on God for strength.

    I comment occasionally, read a lot of posts, and am eternally grateful for the information, advise and experiences that appear in this forum. From one newby to the oldsters, a big Thank you for your posts and dedication to this site. Your words of encouragement and remedies are priceless.

    God Bless.