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My case


#1

Hey guys! I hope everyone’s doing as best as they can be during such a crappy time. My drs seem pretty hopeful that I will be cured from this but from what I read online it doesn’t seem like it. I’ll give you cliff notes this time!

-7 cm tumor in my neck/head
-surfaced the bone of neck skull and almost spine

  • they got out 85% no clean margins but scraped off bone and got it off everything.
  • I am at ucla and have finished 1 round of chemo
  • I also just finished 37 radiation treatments
  • still have 4 more rounds of chemo.

Now ik that without clean margins things look terrible yet ucla seems pretty positive. I’ve been given a 50-80% chance of survival. So far the cancer has not spread. And I’ve been told many times that I am lucky it grew in my head. But this luck or good survival rate doesn’t make sense to me since everything I read online says if it surfaced bone or without clean margins you’re screwed. I have some of the best drs in the world who are extremely blunt about everything. So I was just curious what u guys thought.


#2

Every thing is possible at this point. Don't focus on your survival chances.There is no way to predict what will happen. Just do what you have to do, throw everything you can at the beast so you don't have any regret in the future. Try to make the best of every day...


#3

Hi, my tumor ( 10x15) was also in the head neck region........they gave me chemo first (5 rounds), to create a thin layer of dead tisseu around the tumor, they mannaged to get it all out but no clear margins, 30 rounds of radation and in between 2 more rounds of chemo.

I finished my treatment 3 years ago at the end of august and there are no signs of mets !

GOOG LUCK !!!


#4

BobbyB89,

You have such a fighting spirit...I love it! Disregard those survival chances and just live to fight. I was given a survival prognosis of 5 years 22 years ago and every single day to this point is a battle. I live and enjoy life the best I can and pretty much do what I feel I can handle... "Life is Good" Half of the battle is your attitude. I have also had radiation to the neck...no fun, but I'm still here to shall my experience 2 years later.

I had a wonderful surgeon out of UCLA who did 5 of my lung surgeries due to metastases, but he is now retired. I traveled from the Bay Area to participate in the Yondelis clinical trial for 5 years (64 rounds of chemo) under the care of Dr. Sant Chawla in Santa Monica right off of Wilshire. You're in a good area to get specialized help. I'm now at Stanford, but Dr. Chawla is still involved in my care...he has a vested interest in my survival. I have been on Votrient for a year now which is a pill form of chemo. Very difficult, but I'm handling the side effects. I'm going to be honest with you...I have not seen anyone to be cured once they've gotten SS. I hope they are keeping watch of your lungs. This will probably be the first place a metastases will occur. Read as much as you can so you can become knowledgeable and be able to ask questions. Wishing you the best...keep your positive attitude and that fighting spirit!!


#5

I, like you, focused on survival rates. Stop. It’s a crapshoot for a lack of a better word. Get the treatments, stay POSITIVE & focus on your future & loved ones. NONE of us knows our true odds. Set goals, and live now! Enjoy today (as much as you can) and plan for tomorrow. My tumor was over 5 cm too and I know what that does to our “odds” of survival.
Hang in there and stay positive.


#6

As others have already pointed out, statistics and percentages in our case mean squat. Just focus on your own fight. To keep going gets harder sometimes, I know, but don't lose your momentum and keep taking each step as they come. Best of luck, stay healthy and strong.


#7

Everyone is telling you the right thing in these replies...don't bother reading the survival rates... they are crap and everyone is different. The worst thing i ever did was read that stuff... focus on you. and fight like hell and think positive. and keep getting scanned (esp lungs) and listen to your body, you know it best, dont be afraid to question your doctors!!! God Bless...