ROLL CALL 2014

rachel12yrsuv said:

Rachel 13 year suvivor still

Rachel 13 year suvivor still here!  Its been a year since what could be permibnet Peg tube has been in, still annoying, but handling it is easier!  Got to find something to be happy with side effects of Ensurce plus therapeutic Nutrition has seriously affected my BMI in a good way so from a diet i started in 2012 till now i am at my goal and 70lbs lighter size 8 which i dont know if i e er wore!  

 

Still fighting for SSD finally have hearing date on April 9 @ 11 am in Elkins Park Pa anyone near there feel free to come and support me and our fight when cancer has taken to much!

I have found a few of you on Face book wiuld love to find more of my friends there, having issues with E  mail sorry Matt got your msg wouldn't let me send back , i neec your funny attitude!  If i know you i will accept its under Rachel Wilson my daughter Faith with a Frozen doll on Christmas is on page!  I WAS HOME THIS YEAR!  Pray for you all everyday, love you all hopr your happy!

 

Much Love,

Rachel

Haven't been on in a while. Computer is down.

Rob is 7 months out of treatment and doing well. 50 percent saliva taste is coming g along. Got back in his semi this week and heading to Florida tomorrow

He did end up on thyroid meds a month ago. Weight is stable and diabetes has been beat.

Sandy

P.S. Typing on a kindle sucks

4 yrs out in march. clicking right along.  Bill

tommyodavey said:

Still Here

Tom checking in today.  Dx'd with Mucoepidermoid Carcinoma on the base of my tongue.  Sept. '2011.  TORS was used to remove it with clear margins.  Right neck dissection with 2 positive lymph nodes.  Roughly 40-60 taken out along with my right parotid salivary gland.  The surgeon was kind enough to move my left gland to the center of my chin and instructed the Rad team to avoid that spot.  They did, and now I have one good working salivary gland.  

 

25 lower dose radiation treatments. (not much lower)  No chemo.  My type of cancer does not respond to chemo.  NED last PET scan about 5 months ago.  Last treatment of rads was April 2, 2012.

 

My right neck is still numb.  The pain in my right arm is getting less and less.  When I looked at a picture of myself recently, it looks like my head was screwed on crooked.  A lot of mass and muscle was removed and the only thing added is my turkey neck. (lymphodema)

 

I feel guilty that I don't log in as much anymore.  You guys gave me such great support when I needed it most.

 

Thank You All, 

 

Tom

Although my husband was called home, I remain to honor his memory & to be of help in any way that I can. My daughter, Johnnybegood, is a member through the Colon Cancer forum.

Wolfen

HAWVET said:

Thank you

Appeciate all for checking back in.  I only do an annual update, but folks can read through the thread to check the latest status.

Wolfen, very happy to see you back.  We realize that some of us may not survive and an updated status is most welcomed.  May he rest in peace.

  Will be 5-years out in early April, and have no more visits with any C Drs on the schedule. Dentist is another matter. Started with 5 Crowns and a Bridge- now have 10 Crowns and the Bridge, along with 3 root canals since C tx. And, Dentist has plans on two more Crowns! $14K, out of pocket since I came back Positive. Be advised. Neck spasms are a continuing issue, which I got meds for, but now they're talking Botox treatment at the U of Iowa to help with that. 59, now, and still working 9-hour shifts at a metal working factory as an Inspector, so I got no grounds for complaint. Hey- never thought I'd ever be looking forward to turning 60, but come this November...

Believe

Kcass

staceya said:

checking in...doing great.

I am doing great, will be 4 years this March. Can eat most things, had my first post treatment hamburger last July, and it was delicious!

I started a local head and neck cancer support group over a year ago, and it has been a blessing to me, and hopefully others.

I read the board regularly, but don't often post, post more with the csn folks on Facebook, where I still tend to over post goats.

Recommend this site to all people I meet with either a cancer diagnosis, or their caregivers. 

Cannot fully say how appreciative I am of all the support here.

So thankful I'm still ok.  It's been over 1 1/2 yrs since radiation.  Check ups every 3 months.  I guess no more MRIs unless they see something.  I read about your journeys nearly everyday, don't add much since my treatment was minimal.  Hoping for each of you to win the fight!  You're ALL my heroes!

I had a malignant neoplasm L tonsil in 2011, II  Squamous cell carcinoma - 35 rads. Recurrence in left neck 6/2013 -malignant neoplasm of head, face, neck. Left radical neck dissection 6/2013.  Go for MRI on April 2, 2014. Keep praying.

Just like all of you, I want to kick this in the butt!!!!

Thank you all again for your uplifting thoughts and prayers.

Love,

Robin

I am still OK even though up and down of new normal life.

NeoTheron91, Australia, joined forum September 2011, enrolled March 12, 2013, DX’d stage 4 NPC in November 2011. Still surviving.

Hi All. Just checking in and wanted to make a couple of corrections on Ruben's update: one, name is spelled Ruben ; two, since he is NED, his side effects are related to the treatment.... you know, radiation.... the gift that keeps on giving!  Since he has some dead bone in his right jaw, which was 'caught early', he will be starting hyperbaric chamber treatment on March 10th; 30 'dives'. 

We're looking forward to the 'new normal', as everyday is so different from the last. Good days, bad days, but all in all, we're happy he's alive and NED. 

donfoo said:

hi Ruben!

So, what is the story on this dead bone in his right jaw, which was 'caught early. Who caught it and what sort of rads did he get that might have caused it? Did he have any post tx teeth issues, extractions? Is this classified as ORN? Thanks don

ORN.... sounds like an acronym for oral radiation necrosis, or possibly oseos radiation necrosis??? He had a level 7 radiation. Ruben had two lower molars extracted, one on each side, prior to radiation. The right lower area never really healed all the way, and he has had some bone tissue coming through all during radiation as well as now. At first, it was thought to be pieces of broken tooth coming through the gum, but they did xrays and found it was dead bone all along. The oral surgeion sez it was caught early, and they are watching it closely. It was debrided two weeks ago, and seems to be doing a little better. They are hopeful it will stop in it's tracks with the help of hyperbaric treatments. They said the radiation definately caused it, as the gum didn't really have time to heal before starting rads. He was a stage 4 and they didn't want to delay treatment any longer.  What was surprizing to the oral surgeion was that the focus of the radiation was on his left lymph node, but the dead bone is on the right. Eyebrows were raising all over the dental department. What's done is done. We are focusing on the positive, that it WILL STOP in it's tracks.

Hope all is well with you. Weren't you having some dental issues as well??

Take care, God Bless.

Jude

Silver Foxette, Indiana, joined forum November 2009. Reported by Pam M on February 22, 2014 that Roxanne is once again doing chemo.