ROLL CALL 2015 (ENROLLMENT, CHECKING-IN, STATUS UPDATE) CLOSED 8-15-15

Carolinagal4 said:

Me

diagnosed stage 4 SCC of the tongue (side of tongue) with lymph node involvement in April 2015. Finishing up 35 radiation treatments with concurrent chemo (Cisplatin) now--one more week to go!  The cancer has shrunk considerably so far and I am hopeful that it will continue to shrink (if so, I may avoid surgery).

Apex, North Carolina

This site has so much great info and people on it--I feel lucky to have found it!  thanks so much to everyone who takes the time to reply--You make a difference!

 

Diagnosed May 2014 Stage IV SCC BOT HPV 16+. Large primary with large right side neck lymph node involvement.Three seven hour marathon cisplatin sessions with 35 rads finished Aug. 20 last summer. Coming up NED so far which is good. Taste and saliva issues still suck which is not so good. Went through the entire process by myself...very difficult...have had to maintain warrior status...

Hi,

my dad was diagnosed August 11, 2011 with stage 4a tonsil cancer. He had chemo and radiation. Used a peg for over a year.  This August will be 4 years Thanks to god. 

Have faith and always believe never give up.

michelle

just crossed two years post tx. Overall in better shape mentally and physicall than before. Got tight muscles in the neck and my head sweats now when eating hot stuff. Just hope the long-term side effects stay far away.

CivilMatt said:

roll call

Elaineh,

you just did.

Feel free to say where you are from, a little bit about yourself, if you’re undergoing treatment how’s it going, if you’re finished how are your side effects?

We are very informal here at the H&N forum.  Say whatever you feel like saying, cancer is the common thread here, but possibly not the most important.

Matt

 

im from Austin Tx

diagnosed with stage III SCCA right piriform sinus in March 2014

underwent two courses induction chemo with 5FU, cisplatnim and taxentered then seven weeks of carboplatnim and radiation

NED since YEA !!!

bad side effects of treatment include 45 pound weight loss, laryngitis, recurrent aspiration pneumonia and replacement of feeding tube.  I've had nothing but ice chips by mouth for one month.

Inability to talk and eat or drink have led to social isolation and depression.

really enjoy this site. It gives me great hope to see how all others have dealt with adversity!!

I'm Katrina. 

Forum name: Littlemisskitty

Caregiver to my mother who has Squamous Cell Carcinoma of the upper right jaw that leached into the left lymph nodes.

Diagnosed May 2014.

Home state Connecticut

She went through surgery in June 2014 and again in October 2014 which removed her right side of her upper jaw, part of her upper palette and they reconstructed the upper palette and a prosthesis was made to replace the upper jaw and teeth. A right radical neck dissection was done also that came up negative.  It returned again in June 2015 in her left lymph nodes. She had a left radical neck dissection which revealed the tumor had grown outside of the gland which was supposed to be containing it. They removed the gland and the surrounding area along with severing the suprascupular nerve which he reattached and also splitted to help her regain her muscle movements. She is currently going through 30 treatments of radiation and 7 chemo treatments with carboplatin. She's on number two of chemo today and 5 of radiation. 

So far I have found this site amazingly helpful. It was such an amazing comforting feeling to know that others have gone through this before my mom and have so many hints and reassurances that she will get through this. We felt so prepared for the doctor appointments and for treatmets (although not sure just how prepared you can be for a life changing event). Thank you for this site and all the information it has offered so far and I hope it will continue to be a help to me as well as others. 

Skiffin16 said:

Awww Shucks..

Glad to see you here and doing well...

John

Hello all !

Diagnosed with BOT cancer on January 2010, with Mets to left side of neck.  Had Chemo and Rads, but no surgery.  Since then had jaw replaced on left side due to ORN.  (Thank you Rads)  Anyway, as of today I am 5 years 4 months NED, that's right I said NED !!!!!

Hope all of your folks are finding your new normal a good place to be.  I am.   Just gave my daughter away on her wedding day, so I'm glad i am here to do it.

All the best,

Steve

my post did not complete so I will try again . My Cancer started out as a SCC skin cancer on the top of my head . It was removed by MOHs surgery in Dec. of 2011 , then in April of 2012 I found a lump on the side of my neck . I had surgery and 3 Lymph glands removed also did Radiation . 33 Rads finished On Oct. 26th 2012 . Funny how you never forget that date !Had a recurrence the next April so another surgery . NED ever since . It's so good to see most of my friends are still here ! A big thank you to Civilmatt and Skiffin for all that you do for everyone and this great site !

peggylulu said:

Trying again

my post did not complete so I will try again . My Cancer started out as a SCC skin cancer on the top of my head . It was removed by MOHs surgery in Dec. of 2011 , then in April of 2012 I found a lump on the side of my neck . I had surgery and 3 Lymph glands removed also did Radiation . 33 Rads finished On Oct. 26th 2012 . Funny how you never forget that date !Had a recurrence the next April so another surgery . NED ever since . It's so good to see most of my friends are still here ! A big thank you to Civilmatt and Skiffin for all that you do for everyone and this great site !

One year NED 7/8/15

SCC base of tongue to lower right jawbone

Surgery to remove diseased jawbone and titanium  replacement.  136 lymph nodes removed (all came back clear).  Tissue transplant from lower arm.  30 Radiation  treatments.

Thank you for all the help during  treatment!  

Tim6003 said:

Tim6003 ....your not getting rid of me

Base of tongue w Mets to lymph node.  Stage 3 dx in Oct. 2011.  Hpv+  chemo and rads (erbitux) no surgery. Three years out all clean and NED 

 

In Alaska now 1 full year. Was a childhood dream to move and live here like a pioneer. We did not call it off grid when I was a kid, but that's the deal. Not off grid yet, but getting closer everyday

Boys love bit. Wife likes it, daughter, well, she come along soon as she meets a tsll, Alaskan boy I'm sure

 

Whisper prayers often for you all

 

Love and hugs from tim6003

 

 

 

Base of tongue cancer

neck dissection and removal of lymph nodes

35 radiotherapy sessions

removal of rare tumour in small bowel

in remission, still on two monthly scopes and throat dilations.

clear of small bowel cancer March 2015

taste buds recovered

energy levels normal

not gaining or losing weight

5 ensure2cal each day plus smoothies, yoghurts,custards, soup etc.

life is looking up at present.