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Well its official....Stage IV

vman1300
Posts: 80
Joined: Sep 2007

My wife and I just left the onc's office. I had a MRI done today to compare the findings of the CT/PET.

I am now a stage IV patient with mets to my liver. At 36 years old with no history of CC, this is a MAJOR shock now to say the least.

I start Folfox with Avastin on Oct 5th. What is keeping me going is ALL the survival stories of other IV's. I just pray that I can join those as NED in a year or so...

Kevin

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

Oh, Kevin, I am so, so sorry. Just know we've got your back and will be here for you.

Continue with your positive attitude and your faith in God. My prayers are with you and will continue to be during this very challenging time.

A fellow Stage IV fighter,
Kathy

vman1300
Posts: 80
Joined: Sep 2007

Kathy,

My wife and I will be praying for you as well. I KNOW prayer works and if it were not for God giving me symptoms, I would still be walking around with 2 tumors in my colon.

We are in the same battle and I am here if you need me or my wife for anything.

Kevin

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Kevin: I am sorry to hear your news. I also know the feeling of shock at finding out that I was Stage IV at 38 years old. It´s taken a year and a half (you can read more on my personal web page) and I am finally NED, and so will you. Just be strong and believe, believe, believe that you will be okay. Faith can move mountains. You can do this, and we will all be there right along with you. Monica

vman1300
Posts: 80
Joined: Sep 2007

Monica,

Thanks for the reply. I cant say the shock is over but I do BELIEVE that I will be NED in a year or so.

Kevin

katienavs's picture
katienavs
Posts: 88
Joined: Nov 2006

Hi Kevin,
I am sorry to hear of the news you received today. I understand the shock. I was diagnosed in June 2006 at the age of 24.
I am doing wonderfully today and have no evidence of disease! There is soo much hope! Hang in there!
Katie

vman1300
Posts: 80
Joined: Sep 2007

Katie,

Thanks for the reply. What really helps is reading stories of survival. It does give me hope!

Kevin

apache4's picture
apache4
Posts: 272
Joined: Jul 2007

Just hearing the Stage IV shocked me soooo much! I can imagine how you feel. That was a year ago. When the CT and PET scans showed so many liver mets that they could not count them I figured I was surely doomed, but 16 chemos later the damned things are dead except for one small one. The chemo sucks but it sure can work! Are you getting the Oxaliplatin also? Think positive and keep a mental image of those beasts dying from the chemo. Prayers are a big help also as I had plenty of those and know that faith plays a big role. My thoughts will be with you.

vman1300
Posts: 80
Joined: Sep 2007

I have 5 mets and I already believe they are gone even before treatment has started. I am getting Oxaliplatin as one of the 3 parts to Folfox.

I will be saying a prayer for youas well, for that one last MET to let go of its hold on your body.

Kevin

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

Hi Kevin,
I'm sorry to hear that you are Stage4..I am also Stage 4 and have been NED for 16 months now. I was given little or no hope at first but with a great team of doctors and a good attitude, I am here today. Please keep the good attitude and I will keep you in my thoughts and prayers. Audrey

vman1300
Posts: 80
Joined: Sep 2007

Thanks Audrey!

Congrats on being NED for 16 monts and prayers sent for a lifetime of being NED. I have 100% faith in my Onc team that they are making the right decision and I have 100% faith in my Savior that He will bring us both through this trial.

Kevin

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Kevin,
I am sorry to hear that you are Stage IV. However, I am a Stage IV survivor too. I was diagnosed at the age of 31 and I am happy to report to you that I am now 37! I have been off chemo for over 4 years now (following a liver resection) and have been NED now for nearly 3 years (knock on wood!), that following a lung resection for 2 pesky lung mets. So, I hope that helps you realize that you can beat this thing! I am a strong believer in mind/body medicine. Someone once told me to change "I hope" to "I am", or in your case "I will" (join the NED in a year or so). Best wishes to you and hang in there...Oh yeah, I also have no family history...
-Susan H.

vman1300
Posts: 80
Joined: Sep 2007

Susan,

Thanks for the kind words and for adding to my vision of hope. I will be joining the NED group in a year or so!

Kevin

impactzone's picture
impactzone
Posts: 541
Joined: Aug 2006

Sorry to hear. I was 46 when I got the news on 8/26/06, Stage 4 with large liver met, no family history. I had colon surgery 9/1/06, 5 months of chemo (Erbitux, Oxyliplatin, Xeloda), a pulmonary embolism in Dec. Liver resection at Stanford in Feb, and 5 more months of chemo post surgery (including Avastin). I had a scan last in June and there was at that time NED. I recognize that there is a good chance it will return but have learned a lot. Just my advice, you have more time than you think, don't rush, get information find a good onc and liver surgeon. Get all your meds you might need, eat healthy but don't go crazy with fad diet, take great care of your teeth and mouth, get flu shot now and take care of yourself. I am a high school teacher and coach. I immediately got on an antidepressant early and that seemed to help moderate the highs and lows. I was kinda embarassed to take it but it worked for me. I am now off that and teaching full time and coaching full time. You can make it and it will be a hard journey but you will meet many wonderful people. There is no way you want this wished on anyone but I found it was easier on me than the people around me. I could be sick or sleep but they often couldn't do anything - or so they felt. Looking back, just being there, driving, touching, talking were great. There are many great sites out there including MD Anderson and Stanford that have good news about statistics if that is your worry. Please feel free to e mail me and we'll get through this. You will find you are much stronger than you ever were and you will love life more than ever.

vman1300
Posts: 80
Joined: Sep 2007

Thanks for the reply. I pray for my wife and family everyday, for God to give them the strength to help with this trial as well.

I am working with the best onc and surgeon in Asheville.

I already know this is beaten.

Kevin

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

I'm really sorry that you received news of stage IV. I too was shocked and even now 2 years later and still fighting I still think what the heck. With that said lots of luck with all your chemo and lots of luck getting and staying NED.

vman1300
Posts: 80
Joined: Sep 2007

Thanks for the reply Sue!

We are fighting together.

Kevin

taraHK
Posts: 1961
Joined: Aug 2003

I am so sorry to hear this news. But, you are right, there are some GREAT survivor stories (and survivors!) out there. And you will be joining them! Wishing you all the best on your journey.
TAra

vman1300
Posts: 80
Joined: Sep 2007

Tara,

Thanks for the warm wishes! I know I am going to beat this thing!

Kevin

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Kevin -

I have been away from the board quite a bit and don't think I have properly welcomed you. So sorry to hear about your Dx, but as you have probably seen there are sooooo many Stage 4 survivors here. It's really amazing how far they have come with cancer treatments in just the past few years. And, something I am fond of saying; "Your attitude is 80%of your cure." and you DEFINITELY have a great attitude. Keep it going. Know that we're all behind you every step of the way.

Keeping you and your family in my prayers.

-SpongeBob

vman1300
Posts: 80
Joined: Sep 2007

SB,

Thanks for the reply and welcome. Your story was actually the 1st one I read here. We do seem to have a lot in common, especially on the humor front....

Many have told me attitude plays a major role in treatment. I try my best to stay positive 95% of the time, striving for 100%.....

I am so ready to start my treatment and I can already see those pesky METS dying.

Thanks for the prayers my friend!

Kevin

MarkWalz
Posts: 58
Joined: Jan 2006

I am so sorry to hear of your news. We are a part of group we never expected to join. You are much younger than I am but we have the same dz. I was 51 when I was dz, no history, 8 mets to liver. Still fighting this with all my power, but with all God's strength. I have had 8 months of chemo, 56 treatments of radiation and 5 surgries, but I am fighting this and will not let it get me down. (By the way if you ever need a liver specalist there is one in Charolette, NC a Dr. Iannitti. Great surgeon. He did my liver resection, and much more on August 1 and I am tumor free. So keep on keeping on and keep the faith. I will join with the many in praying for you.
Mark

vman1300
Posts: 80
Joined: Sep 2007

Mark,

Thanks for the prayers. It really means alot.

I will keep Dr Iannitti's name for the future, I hope the chemo will kill the METS that are there now.

I will add you to our prayer list as well.

Kevin

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi Kevin -

I am sorry for your diagnosis and know what a shock it is. I was diagnosed in May 2005 with Stage IV (liver mets). I had colon surgery and then went on Xeloda/oxaliplatin/Avastin. I was NED (according to PET and CT) after 2 cycles of chemo. I went on to complete 6 cycles, had two evals at NIH for a clinical trial (results: NED) and have been NED since. I'm on the three month roller coaster - PET and CT scans coming up in another 3+ weeks. It's a circus, but here's hoping you join me (and the rest of us) on this circus ride. There is hope - please believe.

Betsy

vman1300
Posts: 80
Joined: Sep 2007

Betsy,

You might as well add me to the ride, I am gonna be there. I do believe that 100%!

Kevin

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

Also stage IV Dx at 44...now 47...and NED. I did have a recurrance last year but surgery and chemo took care of it..Like Betsy, Ct is in 3 weeks...so kind of hitting me again...but, wow !!! even all these replies helped me too !
Believe and God bless
Ileana

vman1300
Posts: 80
Joined: Sep 2007

Ileana,

Survival stories like your are an inspiration to me. I do believe I will be joining the NED ranks in a year or so.

Like others that have responded, I will be praying for you as weel for a clean scan.

Kevin

valeriec's picture
valeriec
Posts: 350
Joined: Oct 2006

Kevin,
I can only imagine how shocked you are, but your attitude is GREAT and your faith is strong. God will see you through this.
Keeping you and your family in my prayers-
ValerieC

vman1300
Posts: 80
Joined: Sep 2007

valerie,

Thanks so much for the prayers, it means so much!

Kevin

pink05
Posts: 553
Joined: Mar 2006

Kevin,

My father was diagnosed almost two years ago. Initially stage III, then three months later, two liver mets. He has been NED (no evidence of disease) for a year after doing six months of chemo. I hope this helps you. It can be done. One word of advice I would give you is not to focus too much on stats. Keep us posted on your treatment. You are in my prayers.

God bless,

-Lee-

vman1300
Posts: 80
Joined: Sep 2007

Lee,

Thanks for the reply. I do not focus on the stats. Thanks for the prayers!

Kevin

NWmom
Posts: 80
Joined: Nov 2006

Hi Kevin,

Sounds like you and my husband have the same diagnosis. He was diagnosed 10/06 with stage IV mets to liver at age 36. He also has no family history. I am happy to say that he is now NED a year later. We pray that your outcome will be the same.

Heather and Carl

vman1300
Posts: 80
Joined: Sep 2007

Heather,

Thanks for the reply. I am so happy to hear stories like yours. I will keep Carl in my prayers that he remains NED.

I know that God will get us through this trial.

Kevin

hopefulone
Posts: 1048
Joined: Jan 2007

As many have said, don't lose faith. My husband is scheduled to have a multiple liver resection two weeks from today... He has 5 mets also , in different lobes. We were told surgery not possible for the last 8 mos..Chemo has shrunk the mets significantly, so it looks like resection will take place if all goes well. Long story short, keep the faith , be sure you pursue all options , keep positive and remember that all things are possible with God's help. God Bless and keep us posted.
Diane

vman1300
Posts: 80
Joined: Sep 2007

Diane,

I will be praying for you and your husband for a suscessful surgery. I am praying that my METS will shrink enough once chemo starts for me to have a resection in the next year or so.

What treatment play was your husband on?

Kevin

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