10 years after radiation

Grmad,

Welcome to the H&N forum, 10 years is a long time in cancer years.

I do not have horrible burning pain in my mouth and toothpaste is fine.

Now, different foods (too spicy) are off limits and I will not even try them.  Been there done that.

I have had one sore throat in 5 years and luckily I had an unopen bottle of magic mouth wash, thanks for that. 

No earaches here.

I have plenty of side effects which hang on, but most have to do with eating and drinking, dry mouth and tiredness.

Matt

Hey folks, I'm hoping long time members of this board as well as others that may know long time H&N survivors can share a brief status on how they are doing. It's always encouraging to hear stories from those who fought the battle and are flourishing. So, if you could please include: initial diagnosis and date. treatment and duration of treatment. and maybe a little about how you/they are doing this many years post treatment. Also, if any have had secondary cancers/treatment. Matt, I hope i'm not stepping on any toes here. Roll Call seems to include some of this info. Just thought I would start a thread regarding only long term survivors. Peace! Skidog!

I used to love Korean Kimche, and now even smelling it makes my tongue hurt.  I also had built a very nice collection of single malt scotch that ended up with my son and a collection of EM docs who have no clue on what they lucked on to.  Dry mouth comes and goes but Xylimelts are constant.  I do have numbness on my neck in the radiation target area.  That also comes and goes, but sun exposure and cold weather are the worst.  My expectation at +two years is that is the foreseeable future.  I still am not conviced that my waist size is stable, but my weight hasn't moved much in two years, so maybe.

skidog said:

10 year survival

Hey folks, I'm hoping long time members of this board as well as others that may know long time H&N survivors can share a brief status on how they are doing. It's always encouraging to hear stories from those who fought the battle and are flourishing. So, if you could please include: initial diagnosis and date. treatment and duration of treatment. and maybe a little about how you/they are doing this many years post treatment. Also, if any have had secondary cancers/treatment. Matt, I hope i'm not stepping on any toes here. Roll Call seems to include some of this info. Just thought I would start a thread regarding only long term survivors. Peace! Skidog!

I'm not sure where to go after saying I'm an 11-year HNC survivor.  T4N1M0. 36 rads and 3 cisplatin chemos. HPV-negative! It's been a long, hard journey since getting my great NED scans in 2009.  ORN set in, which led to a left jaw resection in 2014, a second procedure in 2015, and the placement of a permanent feeding tube in 2019.  I use the tube for 90% of my food. My oral food is mostly limited to yogurt, blended soups, pancakes--you get the picture.  This whole thing sucked so much that I wrote a book about it.  It will come out in May, and has a chapter on CSN in it.  But even with all the hardships, I'm enjoying life a lot, and it sure beats the alternative with a Stage 4 cancer diagnosis, so no whining from this boy.

Mike

i'm 2+ years out from BOT surgery/30 rads, and I get earaches  intermittently. Freaked out at first, had it all checked out, couldn't find anything, ENT and surgeon say just likely long-term radiation effects. The gift that keeps on giving!

I am also starting to get the aches and rining.  I am not sold that its after effects I am 8 years out (I thought I was 9 years, I added a year for some reason I posted before I had 9 years). Anyway I am getting up in years and think that I am going to have my family doctor rule out other causes before I give up and say its just post radiation.  I am going to have another go at cancder treatment for a new spot and going to the University of Michigan for a consulitation.  May be a good idea to list current issues and ask them, the experts if these are really post radiation, or should I be looking at other things.

Not being doctors its hard to tell what is just after effects and what is a treatable condition.  We won't know if we don't ask.

2010 rightside tonsil.stage 4. still no taste,trouble swallowing,limited amount of saliva. pain in right ear,neck and shoulder. thing is tho is i,m 80 years old and still kicking,maybe not as high but still kicking,

My husband will have radiation soon for aggressive perineural squamous cell on his forehead.  How much is this radiation going to damage his eyesight?  The oncologist says he may get a cataract which can be removed.  Any other side effects?