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stage iv survivors?

druidshadow's picture
druidshadow
Posts: 85
Joined: Feb 2012

i know minni asked about the stage 3 ones that is gave me the thought, everyone i have talked to outside this board has said that stage iv is treatable and they can make you comfy whle your life lasts but it is not cure able i need to know that there is a chance to go ned and that some have gotten past the 5 years most are given i was given only 3 at the most, i know take it one day at a time and all but i am not ready to think that in 3 years my sons and step daughter will not have a father i want to be there for my kids wedding days and when they all find love, please tell me that there are folks that have made it past this point well past this point. i start my second round of chemo starting monday and belive it or not i am more scared then when i did the first round 2 weeks ago.

john

mom_2_3
Posts: 965
Joined: Nov 2008

John,

You can read my history if you click on my username. Summary is that I am currently 2 years and 8 months NED since liver resection of 5 liver mets in 2/09. Next scan is this Wednesday and praying I have made it to the 3 year mark. We have a friend whose father was a great resource to us when I was first diagnosed. This Stage IV had mets to distant lymph nodes and given grim prognosis. He will be 8 years NED in May. A neighbor is 17 years out from her liver resection. I have a notebook where I have listed the names of everyone I have found online and in person greater than 5 years NED. It's quite a list.

Have faith, have hope....

Amy

Momto3boys
Posts: 16
Joined: Dec 2010

John,

I am a reader, not usually a poster. But wanted to chime in.

I was dx in april 2010, stage IV with spread to Liver, Ovary, mesentary, 13/16 lymph, etc etc. After my surgery to remove a 20 cm tumor on my ovary, among other things. The pet showed remaining disease in liver and lymph. On to Folfox/Avastin for six months. Liver met "went away". Then 12months of Avastin/Xeloda afer that. Off Chemo now and monitoring. 22 months out and no progression/recurrence. 14 months NED. Not sure what the future will hold. Trying to move on. Sick of waiting for what might or might not happen.

I run into more and more Stage IV survivors.

Hang in there, friend.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

The median stage IV patients have gained modestly, not so much as have a growing minority that have benefited from aggressive surgery, multimodal treatment, frequent and proactive monitoring, and somewhat improved chemotherapy or biological treatments including natural ones added.

Personally I'm all for surgery; inexpensive oral, metronomic low dose chemo; mostly natural, less toxic, targeted biological therapies; and natural immune system modulators.

Stage IV wife is almost two years along, just hit her lowest CEA ever, 1.7, after what appears to have been a ~5 month transient CEA elevation, hopefully a micromet, perhaps a lung thingy, completely eroding out. She's still on continuous immunochemo and lots of targeted supplements. This mild CEA rise was a nail biter after 4 months, because remedial mobilization starts at six months as the hope of a favorable CEA transient starts to fade after 4 months and is very low at 6 months according to literature...

janderson1964
Posts: 2215
Joined: Oct 2011

I am a stage IV survivor diagnosed in October 05. I am currently NED again through the miracle of liver surgery (3rd liver surgery). I am now working on 7 years. I am also very active mountain biking, kayaking. I also am very into diet. 95% organic, mostly vegetarian and juicing 3 times a day. Be positive and don't listen to the statistics. We are not a number. We are all individuals.

Jeff

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

As you all know my CEA has been going up the past couple months. It was at 13 last month and this Friday I find out what it did this month. I have been NED, for 2.5 years. What a great feeling, but really, never really thought I was cured. We never know who is going to win in this game of Russian/Cancer Roulette. That is how I see it. Lisa fought this Cancer so hard and she was never NED, God Bless her... I wish she would have had even a day of NED.

But, John, I know what you are saying...

Words hurt when they are too close to home. But it is, what it is, we can only hope and pray for the best outcome.

Stand Tall

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Reality is that Stage IV is a tough diagnosis. For most of us with Stage IV CRC, it is what will kill us one day - the cancer or complications due to the treatment of the cancer. Those are the hard, cold facts.

But everyone dies one day. If you are born, you die. Period. No way around it.

That doesn't mean to give up hope. It doesn't mean you can't be cured. It doesn't mean you can't live a long time as a stage IV CRC survivor. I was misdiagnosed for 2 years. We don't know at what point in time during those 2 years I became stage IV - mayebe at the start, or maybe at the end? I'm 2 1/2 years out from my diagnosis and going strong. Almost 5 years from when we know I had a big tumor causing a lot of troubles.

I know that CRC is what most likely what will take me one day, but I'm not ready yet! There are more advanced surgeries and radiation procedures that are improving odds and length of survival compared to even 10 years ago.

Back to the best advice - hope for the best, but plan for the worst. Do not ignore the possiblity of death for stage IV - be prepared for your family's sake. But do not give up hope to be around a lot longer!

pscott1
Posts: 207
Joined: Jan 2011

I was diagnosed in January of 2011 Stage II, in February found out I had multiple lesions in both lobes of my liver, 30+, I have been through Folfox w/Avastin and now on Avastin only. Last MRI showed 15 lesions in right lobe only and my tumor marker is at 1.3. I have been on short chemo break and will go back for MRI on March 7th. I'm as scared as you. Hoping for amazing results and like all of us....new treatment, to be NED, liver resection, one day ultimately a cure. I won't allow myself to give up hope. I've had a new will made, POA, Health Directive, TOD on my car and made my oldest daughter beneficiary on my home. I don't have really squat in life insurance to take care of my 2 younger girls but bottom line....I'm NOT giving up hope. I will fight this until I have no more fight in me. I plan on being around to see my girls grow, graduate, marry. etc., etc., etc. No matter what the statistics say, I'm going to keep believing that I can beat this. Hang in there. We're all in this together. Hold on.

Hugs,

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

John,

I'm not going to add any "facts" or figures to this, because I'm not a medical professional. I just want to say that I will include you in my prayers and hope for the best for you.

*hugs*
Gail

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but really, everyone should be doing that, even healthy people. I've known several young (ish) people who died suddenly (my favorite chemo nurse dropped dead of a heart attack at age 49, absolutely no sign she had any problems). Even before I got cancer, I had a fair number of critical documents in order, and now I'm working on some of the details for my memorial/burial plans, even though I hope to still live a long time! My mom made all of her wishes clear years ago, and she's still puttering along at 86, secure in the knowledge that when she does go, it's all sorted out for her kids. Advance planning is a good idea for all of us.

swimmer22
Posts: 60
Joined: Oct 2011

I was diagnosed stage IV in December 2010 with a met to my lung. I had surgery to remove the met in January via VATS that obtained clear margins, followed by 6 treatments of Folflox.

I had positive results with the chemo which also was decreasing the size or my rectal tumor. I then did 28 days of chemo/radiation and had a complete response at the time of my LAR. No lymph node involvement and no pathology of cancer in the resected scar tissue. I am now completing my 10 of 12 adjunctive chemotherapy treatments (Folfori). Had a PET scan last week and currently NED. Everything is very good news-- starting as a Stage IV, I am blessed to currently be in the situation I am. Remain positive, while I have a way to go to proclaim being cured, I couldn't ask for a better current situation. Take Care.

crazylady
Posts: 544
Joined: Jun 2004

hi everyone,
I am an 8 year stage iv survivor. I was diagnosed stage 2 in March 2004, stage iv oct. 2005. Until December 2011 I had only lung involvement. Unfortunately recent scans show adrenal gland and liver involvement, but I am still here. It has been difficult to be in almost constant treatment, but worth it.

Jamie

Grace14
Posts: 65
Joined: Sep 2011

This is very scary there seems to be alot of stage 2 people that are now stage 4. I had stage 2 in 2010 so far so good..but just wondering was it t3 or t4 and did anyone have chemo after surgery.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Is always going to have recurrence, and this forum is no different. Most who join here as stage 2 get through treatment, are disease free, and get on with their lives. Those who have a recurrence come back, and can over represent their group.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I have a question, I don't quite understand. With Stage 1V they will do liver resection with "curative intent".....why is it if you have mets elsewhere they don't consider that as curative??

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Is there to support curative intent for liver surgery. For other organs the end result does not have the data to back it up.

That said, the liver data supports the hypothesis that single organ involvement can be treated surgically and be curative.

Regrettably, surgeons often have enormous egos, and sometimes do more harm than good. For a cancer example of this look up the history of the radical mastectomy and its use with breast cancer. For decades Women were put through a torturous and debilitating surgery because surgeons refused to submit their work to the scientific method.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

*

peterz54's picture
peterz54
Posts: 345
Joined: Feb 2012

druidshadow, people do go NED. you may want to check into the work done by Yuman Fong at MSKCC on clinical scoring of mcrc patients as a tool to help predict suitability for resection (this has to do with liver mets). there is quite a bit published in terms of studies related to surgical intervention for mCRC patients.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

It's a great facility with many talented doctors/oncologists who work there.

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hi John,

I was reading this post about Stage 4 survivors and statistics. Alot of information to process ~ some information I like and other information concerns me. I will not comment about statistics but I will comment on the mountain you are climbing in this journey. I pray for you daily along with many others on this board. I truly believe only God knows when our time is up ~ whether we are Stage 2, Stage 3 or Stage 4. We must make good choices along the way...seek the best hospital, surgeons and oncologists to help our jounney, take care of our bodies through nutrition and exercise, surround ourselves with postive behavior and energy... but in the end, only the Lord above knows when our time will come...

A Minnesota hug and prayer coming your way~

"Minnie"

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