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

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

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.

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.

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

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. 

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 said:

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 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 

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.

 

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 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

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

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!

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.