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Been away...trying to survive

Isign4Him
Posts: 34
Joined: Jul 2012

Hey all...been a while since I posted.....I guess I was busy just trying to survive. I am 11 days out of TX. What a journey to get here......9 days in ICU...shingles...havent had food in my mouth for over 2 months, after 27 days of rads I freaked out and it took me 5or 6 days to get back in the saddle, lost 33 LBS and thats just the short version. If not for God and my amazing wife and all of the family and friends that He surrounded me with I am relatively sure I wouldnt be here. At any rate I have a couple of questions that I hope someone with close to the same cancer as mine can answer. I had, (you see I am being postive, scan not until April) Sqaumous cell carcinoma of the left tonsil that spread to the lymph nodes on both sides of my neck. Ok the radiation of course trashed my saliva glands and throat. Elevn days out I can tell my throat is healing and I am starting to swallow a little water everyday. First ? how long before the throat heals ? Next, I am amzed at the amount of stuff bodies can produce, how long before I quit having to spit out thick secretions that seem to come from my throat?

In Christ, Kevin

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Kevin,

 

Congrats on finishing in one piece, it is a real fun ride.

 

My SCC was of the BOT and involved 1 lymph node, I also went through the traditional 35 rads and 8 doses of Erbitux.

 

You say you are getting better and I expect improvements every day, be it slow.  We all heal at our own pace and it can seem forever, but it is not.  Patients is the game.  Just trust your body will heal (it got you this far).

 

I lived on smoothies for 7 months because of taste and feel issues with food.  I was satisfied with that condition being permanent, but it wasn’t.  Now at 10 months post I am chowing down on all foods (not much taste yet, but getting better).

 

The mucus / saliva / Pelham issues do get better.  During the worst time I always thought I should own stock in Kleenex.  Not as often now, but I still spit out quite a luggie.  I would expect you to get better in this department too, but have to wonder what the “new normal” has in store for each of us.

 

Hang in there Buddy,

 

Matt

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hi Kevin...

What you describe is for most all of us that have had rads... Though I did have STGIII Right Tonsils, lyhmpnodes same side...

Healing depends on many factors, mainly how badly were you damaged during treatment...for me that wasn't really that bad. I was sore, raw, not bleeding, no open wounds... It usually takes a good 3-4 weeks post rads before you start realizing much change in the throat for swallowing, less pain and maybe starting to eat smooth, creamy types of food.

I had Amifostine injections before each rad, so I didn't have that much thick mucous and phlegm. I did have the very dry mouth, stick like glue saliva, you couldn't spit out if you tried.

I rinsed a lot with baking soda and hydrogen peroxide mixed in a little water..., club soda, ginger ale, etc...

Hang in there, at eleven days, you are coming along very nicely actually...so you sound to be on an excellerated pace as it is...

Best ~ John

 

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

I wondered where you went, even tho I knew that you were pushing thru treatment.  I'm sorry you had to suffer thru shingles on top of all the other suffering you were going thru....

I think you're doing pretty darn good if you can actually tell that you're healing 11 days after the end of treatment.  I was able to swallow Ensure about 2 1/2 weeks after the last treatment....and once I was able to do that, I started experimenting on other soft foods....nothing scratchy for sure!!  Lots of soups, and I'd dunk sliced French bread (heavily buttered) into the soup....soak up broth so it could slide down.  I didn't have any food in my mouth from July 3rd till the end of September, so I was really hungry...I imagine you're getting there, too. 

As for the mucous....I didn't suffer much from that...supposedly the Amifostine I had during radiation to protect my salavary glands also keeps the mucous down.  I'm still dry mouthed, and my taste buds are still merely taste-aquaintences.....I'm 7 months out of rads and 5 months out of all treatment.  But like Matt, I'm hopeful that they will come back with time....

Glad to see you in the forum!

p

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

Not much to add just congrats on having tx behind you! It all gets better from this point forward :-)

tommyodavey's picture
tommyodavey
Posts: 339
Joined: Nov 2011

Glad to see you back Kevin,

 

I was wondering how you were doing and even considered calling you today but quickly forgot, and now I'm here reading your post.  Not a great update for sure but you are on the right path for recovery.  So sorry to hear about the Shingles hitting you.  IMO, you have been through enough pain already, so adding that is just not right.  Is it on the way out or are you still having issues with it?

No big physical reports on side.  I'm doing what most everyone else is, getting tests to make sure it hasn't returned.  Had a PET two months ago that was clear.  A CT scan last week and no phone call yet so no news is good news.

Say hi to your sister for me.  She cares a great deal for you and your health.

Tom

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

How true!

Too funny..

lts's picture
lts
Posts: 75
Joined: Nov 2012

Taste-aquaintences, not funny P51, but made me laugh.Smile

Luke

katenorwood
Posts: 1802
Joined: May 2012

Kevin,

It's good to see you posting again !  And done with  those tx's yes way to go !  I am so sorry to hear about the shingles....good heavens not good !  Keep up the good work on the swollowing.  I hope everything turns the corner and you feel better real soon.    Katie

Just George's picture
Just George
Posts: 8
Joined: Jul 2012

Sqaumous cell carcinoma of the lower throat that spread to the lymph nodes on both sides of my neck.  The usual rads and chemo (3x) and treatment stopped on Oct 10, 2012.  I quickly found that you measure recovery in weeks, not days.  My throat was on fire for a month.  I could not eat or swollow anythng.  The feeding tube saved my life.  The flem coming up was really something.  24/7 it came like a flood.  After about 6 weeks I could strat taking on water.  Then I hit on Carnation instant breakfast.  WOW, that stuff is good. 

 

It thought I would be eating Thanksgiving dinner!  Then I thought I would be eating Christmas dinner.  Well after 3 1/2 months I'm almost eating normal.  Still do not have any saliva, but taste buds are about normal.  My feeding tube came out yesterday and I have managed to gain 10 pounds since Christmes.

 

Just hang in there.  It will come back.  Really, one day you can't taste anythng, and the next it's all about eating more. 

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