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Meeting with Sloan

kbienapfl's picture
kbienapfl
Posts: 61
Joined: Sep 2006

We have returned from our trip to Sloan. Our news is not good. We met with the doctors and went through my entire history of previous treatments, etc.

It came time for questions. First question; prognosis. She looked me in the eyes and told me I have incurable cancer. That led to my next question of how long? She explained that I am treatable, just not curable. Okay, treatable for 5 years or 20 years? They really don't know these answers, but if she had to guess her answer was 5 years.

She continued to explain that I will require chronic treatment. This means I will be living with chemotherapy treatments for the rest of my life. I will be allowed short breaks for vacations, etc., Of course, this all depends on how well and long my body can tolerate all of these chemicals and the side effects that occur with them.

Basically, it comes down to prolongation of life with acceptable quality. With new drugs being created for other squamous cell cancers and phase I studies, there is hope that this news is not as ominous as it appears right now.

My plan is reduce to stress, maintain a healthy diet, exercise and live with a positive attitude. The stronger I am as a person the more tolerable treatments will be.

Got a lot of living to do!

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

When I was first diagnosed, I was hoping for a permanent dance with NED (no evidence of disease) after 6 months of treatment. I had a recurrance and now the doctors basically tell me that I will be treating it as a chronic illness and will probably be on some type of treatment for the rest of my life. My doctors explained that this is fairly new in the world of cancer. Just a few years ago, the prognosis would be pretty dim, now they are able to sustain life with a fair degree or normalcy for folks like us.

Living life to the fullest with a positive attitude is the way to go. Pray for miracles and try to stay on the right side of the grass until that "special" cure comes down the pipeline.

My very best to you in your journey.

Kerry

P.S. I go to MD Anderson Cancer Center and completely trust my treatment team there.

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

I'm sorry to hear about your prognosis,,,,but then read further and was delighted to hear about your attitude and the way you plan to handle it. That's the best thing and hope for the best.

I know exercise is important. Actually, I just came back from exercise (CURVES).

You are in my thoughts and wishing you strength and energy

claudia

kmygil
Posts: 881
Joined: Feb 2007

I love your attitude! It is not easy hearing something like that, but you are handling it the right way, in my opinion. After all, life is a terminal condition, and we are all "on maintenance", as it were. It has been eye opening to hear of cancer spoken of as a chronic condition, rather than a terminal condition. When I was a child, my father told me that if/when he was diagnosed with diabetes (a surety in his family), he was going to try to terminate himself since he didn't want to die like his father. When he was diagnosed, he was amazed that it was no longer considered a terminal condition, but a chronic one.

So LIVE! I am praying for you.

Kirsten

kbienapfl's picture
kbienapfl
Posts: 61
Joined: Sep 2006

Thank you for your responses.

You are right, we are all terminal. I refuse to view this as a death sentence, rather a life adjustment and an opportunity to view every day as a gift. (Well, a few of those days after chemo infusions can be challenging to find the positive...lol)

Just a few short years ago a diagnosis such as this would be rather dire. With targeted therapies such as Erbitux and Avastin, we can consider this as chronic.

I have created my web page on this site if you would like to learn more.

Thank you for your support. You are all amazing inspirations!

sladich's picture
sladich
Posts: 430
Joined: May 2007

Thanks for your positive attitude. I too am a Stage IV - not curable. Right now though, I feel great and I am doing well. You do the same!

Debbie

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Your attitude is great. You are right, we all are going to die. Some may have a better idea of what from but not always. As long as we breathe there is always hope for a cure or improvement in our condition. Enjoy life!

Dick

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

What a great atitude. It seems there are a few of us stage IVers that are cronic. I have been visiting the NED side of the fence from time to time but so far seem to get the fat lady back for one more song. I think if you keep that belief that this time you will get to NED and STAY NED, then we have life. Sometimes God comes down to bring us home wihout the time to even say our I love you's. Other times God gives us time to figure out the meaning of life and time to appreciate what and whom we really love. I in some odd way am quite grateful that I have been given the opportunity to apprecaite the finer things and people in my life.
Stay strong and fight like hell.
Limey

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

What a wonderful attitude!
When I was diagnosed with mets to the lungs about 2 and a half years ago, my onc said essentially the same thing (not time framw wise, but that I now had a chronic disease). I resisted, still planning on meeting NED. Now that it has spread to my brain I'm feeling a bit less sure about it, but the one thing I can do is keep treating it (as long as I can tolerate the treatments) and hope that somewhere down the line, that cure will come. In the meantime, I am going to try to get as much enjoyment from life as I can find!
Mary

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