ROLL CALL 2016 - UPDATED June 27, 2016 (CLOSED)

i have been remiss about checking in on the roll call. I have been in remission since 2009.  i still have side effects from treatment but able to enjoy life! 

Peace, Mark 

I am a new member, Aug. 2016. Diagnosed with squamous cell cancer of right maxilla and had surgery Jan. 2014 to remove 1/4 of mouth and soft/hard palate on right side. 26 lymph nodes removed March 2014. Recurrence May 2014. Radiation, chemo, and 2 hospitalizations from June thru Oct. Had feeding tube due to severe mucositis for 19 months, June 2014 to Jan. 2016. Final obturator Jan. 2016, have been on soft diet since then. Still dealing with some mouth pain and taking opioids. I'd like to talk to others who have an obturator. I'm a Christian, and I'm grateful to God for carrying me through this hard time and for all the support from friends and family. I'm writing a book about my experience.

Blessings,

Jane

Crossed the 3 year post mark in June 2016. Doing great and living large everyday!

It has been 5 years and so far so good.  Still getting CT chest scans which I recommend for everyone.  I had a very small spot on my lung that was deemed insignificant but a a follow up this fall is in the cards.  I also had bladder cancer which I don't think was realted to this.  It was treated and not problems since. I have zero side effects and have full taste and saliva.  I had the traditonal rads and the Erbitux when it was hardly heard of.  I have zero side effects and have full taste and saliva.   I was thinking in my life of 70 years I have had melanoma (50 years ago), prostate cancer 15 years ago, scchn 5 years ago, and bladder cancer a year ago.  I would say that is enough for this life.  Take care and be well.

John

Debbiejeane, still alive and doing ok for the most part.  No health problems except depression.  Somedays worse than others.  This is a great place to be so if you've found your way here, you're in good hands.  I don't check in much any more but the people on this site are always in my prayers, even if i don't know you.  God bless you and make you cancerfree!!!

Sincerely,

Debbiejeanne

First off, please feel free to Enroll name, town, state, dx:

Paul

Memphis, Tn

Adenoid Cystic Carcinoma Aprl 29, 2016 after removal of sub-mandibular gland was found to be cancerous. Completed 35 rads (66 Gy to primary site (surgical bed) and 56 Gy to surrounding neck at West Cancer Clinic in Memphis Tn via IMRT, right side only. Recieved chemo week 1 and 2. Completed radiation 8/31/2016. Current side affects include sore throat, swallow pain on right side, sharp pain at tongue base/right side of tongue, high mucous production (lots of spitting) mostly at night, dry mouth during the day, especially when trying to carry on a conversation, burn on neck of course and the 'mystery fatigue' I have read so much about. Diet has been exclusively Ensure Plus and water since about week 3. Lost about 30 lbs, but continue to drink/swallow on my own. Current pain med is basically 5mg/325 oxycodone/acetaminophen every 8 hours, 2 days being off of fentanyl patch (25mcg/hr). Use 'magic mouth wash' prmarily at this point to curb mouth pain in order to drink Ensure via straw. Worried sick of course about recurrance/mets but, radiation has given me a whole new set of issues to focus on for the moment. Hoping that soreness and swelling in mouth/throat will sub-side in the next couple weeks, less concerned about taste, more concerned that the sores wont go away, the sores, for me, make the idea of eating, a near impossibility. Thankful for many many people in and out of my church who have and are praying relentlessly for me. My prayer and goal is of course, to be able to live to enjoy my kids and retirement with my awesome wife. God willing : ) Have been lurking for a while, saw the role call and thought, may as well. Not much info on ACC as it is, willing to share what little I know.

-Paul