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jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Folks, I haven't posted much lately but I do lurk around the site often to see how everyone is doing and thought it's probably time for a quick update.  

This week I had my 9 month scan.  My MedOnc is of the belief that for the first year he wants to see scans every 3 months.  After my next one in February we will move on to six month intervals.  I'm please to say to this point everything is still NED.

Here are some interesting timeline items that may help folks that are in treatment or about to start as to what one person experienced (remember everyone is different in their healing times).  My ability to eat and saliva output started to increase at around the six month mark.  Still could not eat meat or bread and food would easily get stuck in my throat so every meal meant many glasses of water and took quite some time.  At about 7 1/2 months I could consume enough calories from food that liquid nutrition (ensure) was no longer necessary.  Now, it's like a light switch went off in just the last two weeks and I can eat virtually anything.  Saliva is about 75% of original and I ate a MacDonald's QP with Cheese and a medium fry for the first time yesterday, I know crappy nutrition but I ate FRENCH FRIES!

So, the purpose of this post is to assure you folks that it does get better.  I still have swelling, dry mouth at night is a challenge and there is still pain (about a 2-4) mostly at the main tumor site (SQ BOT Stage IV).  The doc's all said I have about 3 months to go on that stuff but it's not much more that a bump in the road to handle.  Have faith that you will get better.  As all these amazing folks here that give us strength and support continually tell us, "take it one day at a time".  And, the best piece of advice I ever got on this board, "don't borrow tomorrow's trouble today".

Live long and prosper :)

Joe Cortney

Dallas, TX

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

We are three days from the end of treatment. Your post was so encouraging in one of the worst times we have ever been through. "This is hard" is an understatement, and I'm not even the one who is actually going through it...nice to hear once again that it will indeed get better.

Jamie

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Jamie,

You are now entering the roughest period of the treatment.  For the next two to three weeks things will not be looking up.  That is because you continue to cook even though the RADs are done.  That's the bad news.  The good news is that it only gets better from there.  Almost day by day you will see SMALL improvements.  This is also the time that neck burning tends to rear it's ugly head.  There are prescription creams that will take the pain away in an instant.  Also, Thrush tends to hit around now too.  It pays to have remedies for both on hand before you need them.  Better prepared than have it hit on a Saturday and be out of luck getting help.

Good luck to both of you.

J.

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

First thing this morning was a call in to the Dr. Surprised Last night he went to bed fine, and this morning Pat woke up with a terrible blistering, painful neck...We thought his neck was doing so well, and then, BAM! Anyway, got a prescription cream called in, so all is well for now. Gearing up for the next couple of weeks, and looking forward to the day he says he feels better...

Jamie

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

This is one of those times I hate being prophetic.  I'd be prepared for the thrush too.

Joe

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

joe, so glad you are NED and doing well.  thank you for posting to let others now it can be done with a few bumps in the road.  take care and continue to heal.  good to hear from you.

God bless you,

dj

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

Thanks for the update.  Sounds like you're on the same timeline as I was.....ha!  I am delighted to hear, tho....that you're moving along, and everything has been NED (gawd I love that word).....Time seems to be the answer with HNC....months not weeks.....

p

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

And how true Phran, months and still months more :)_

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Go on a cruise.  We just got back from the Panama Canal and I have to tell you, 24 hour buffets are a head and neck patient's nirvana.  Always something you can get down any time of day you are hungry!

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

Hey Joe,

Glad you dropped in. It is always great to hear how those who have passed through and gone back to living are doing. Thanks for the update and continued high fives on the scans! Don

TracyLynn72's picture
TracyLynn72
Posts: 729
Joined: May 2013

That is wonderful news!  Congrats on NED :)  Sounds like this dry mouth stuff hangs around (at night) for a long time.  That's the worst for me.  Glad to hear you are doing so well.

 

French fries SMELL SO GOOD, but when I try them they taste awful!  Most of my taste is back, but fries are NOT on my good list anymore. 

CivilMatt's picture
CivilMatt
Posts: 3010
Joined: May 2012

Hey Joe, where you going with that NED in your head (and neck)?  i.e. Jimi Hendrix

So nice to hear such a favorable report from you.  I experienced the switch being flipped at 7 months.  For me it put me back in the food game and retired me from smoothies overnight.  Funny how something as simple as French Fries can mean so much, but they do!

Best advice I got from H&N Central was “drink lots of water”, but that thing you said about borrowing Skiffin’s boat or Phrannie’s horse or money tomorrow was real swell advice.

Your Oregon Buddy,

Matt

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Glad you stopped in for a Hey There....

Sounds like you are progressing nicely, fast food always seemsd to work best at first, LOL... I had a thing for Burger King Double Cheeseburgers..., umm and I still do, LOL...

JG

Duggie88's picture
Duggie88
Posts: 550
Joined: Feb 2010

Glad to hear your doing well or should I say just cruising along. McDonalds does have good fries and their milkshakes ain't to shabby neither.

Heal on............Life is good

      Jeff

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