any stage 4 colon cancer survivors?

[marbles]

hi! i saw from most of the poeple's stories, they find out at stage 2 or 3. my dad was stage 4 and had metastasized tumors in the liver when he found out half a year ago. the doctors we see are so matter of fact about everything that it sometimes makes me mad. they dont give us much hope.

ive read that IP6, curry, and onion inhibits colon cancer tumors. has anyone tried alternative methods? or is chemo and surgery the sure way.

this year has been rough. but its encouraging reading all your stories from the colondar! thanks

[EBMJ]

I am living with stage 4 right now. I have a liver resection scheduled in a few weeks. I don't look at the staging as a prognosis, in fact I have never asked for or gotten a prognosis from any of my doctors. I am 48 years old, relatively young and otherwise very healthy. I can tell you I am not going anywhere, I totally expect to have a long life expectancy.

The chemo has not been nearly as bad as I thought it would be, I seem to be tolerating it very well.

My advice regarding the doctors is to seek out specialists. My general surgeon thought I was unresectable, a Surgical Oncologist says no problem, he will resect me. So look for experts in their field. Consult with other cancer centers. Keep digging until you get the answers you want.

For liver mets, check out Radio Frequency Ablation, SIR Spheres, Thera Spheres, Chemo Embolization, Cyber Knife, Gamma Knife. There is lots out there now for liver mets, be aggressive !!

[bradyr]

I'm stage IV. It’s been 9 months since my diagnosis.

My doctors were upfront about the statistics, but they also explained that depending upon how I responded to treatment that I could life for many years. It was just that there were no guarantees - but even without cancer, life has no guarantees anyway.

My mets were not operable, so I when the chemo and radiation route. I wasn’t pleasant, but it’s tolerable. I don’t consider myself a particular strong person and I made it thru. So I think all of us have hidden strength and can endure it for the few months.

Many put great faith in the non-traditional treatments. I myself feel more comfortable with the traditional approach as recommended by my doctors. Others are free to have their own opinions, but I don’t believe in an magic cures from non-traditional medicine. The chemo seems to be working pretty well for me.

I had the primary colon tumor removed via surgery in Feb. I had radiation to the bone in my leg and arm. I had 6 months of folfox4 plus Avastin. I had two months off and now I’m on a maintenance dose of Xeloda.

Clearly I would have been happier to not have to do any of this, but I do have a pretty good quality of life. There are all kinds of minor side effects that come and go with various treatments. But those are manageable and provided you don’t dwell on them, they are really just noise. Yes, during the main chemo I was sick a couple of days every two weeks and tired, but I could still be with my family and enjoy most of the things I always enjoy.

There is hope. Not necessarily for a cure right now, but cancer can be kept at bay for many years. We all have to die sometime from something. Who knows how long anyone has. Rather than focusing on what looks like an upcoming end – focus on making the most of each day, since no one knows how many days anyone gets on this earth.

Think good thoughts.

[murfer1]

I was diagnosed with stage three, then developed into stage four when liver mets were found well into my first round of chemo with FOLFOX. That was in January of this year and I then did a full round of chemo with FOLFIRI plus Avastin, making a total of 20 treatments!! I tolerated them well and had one "clean" PET scan, only to find that tumors were returning to my liver. I am not a candidate for resection at this time, but will have SIR-speres on 12/6.

I agree with other responses to your message that finding expert treatment, preferrably through collaboration of several disciplines (i.e., oncology, interventional radiology, cancer surgeon) is the key to better survival. I am fortunate to live near a well respected hospital for their cancer treatment, but have had to push to have input from these various disciplines.

Although some cancer treatment centers seem to do a good job of augmenting treatment with herbal and vitamin supplements, I would be leary of the many miracle cure products that are found on the web, as they are also out to make a buck and are fairly untested. That being said, I have stuck wtih one natural remedy that has been somewhat documented to have anti-angiogenesis (tumor-reduction) effects, but must confess that I am skeptical about its effectiveness. I eat cottage cheese and cold pressed flaxseed oil every morning, based on long-standing research by a Russian doctor dating back to the fifties. It tastes pretty bad, but my wife is just sure that it's helping and my oncologist saw noting harmful in eating something so healthy. It's cheap and I figure it couldn't hurt.

I love the attitude of my interventional radiologist. He says that his job is to keep patients alive until something better comes along in the treatment research pipeline. There are many promising areas of research going on right now, and my goal is to be alive long enough to be in one of their clinical studies.

My best wishes to you and your father!

[FiG-S~]

I was diagnosed with stage IV colorectal cancer almost one year ago. I have 7 mets to the liver, covering both lobes, making it currently inoperable. I actually think I have 8 & 9 now as well. (I don't ask too many questions. Ignorance is bliss and prayers are powerful is my motto.) My doctor never gave me a prgnosis, just treatment. He is all about living and not discussing dying. Besides, only God really knows. This is currently my third chemo regimen. I've been on chemo since January. Although I don't work, and get sleepy, I really can't complain. I am still able to enjoy my three year old and remain very optimistic for the future. Positive attitude, I believe, helps tremendously. The hell with statistics, enjoy life. Statistics say I shouldn't even have this. And if you're hell bent on stats, someone has to be the good outcome. With the primary tumor removed, I figure I have less cancer now than a year ago; and I was doing pretty good then so...

Check out other stage IV posts. Many encouraging people on this board!

[Dot]

There are many Stage IV survivors! My husband was dx in Oct 05. Had the right side of his colon removed, then went through multiple small surgeries due to problems with wound healing, started Chemo in Dec 05 through May 06, Folfox, avastin. In July 06 he had a liver resection to remove the shrunk tumors, along with an abalation to the areas that could not be resected.

So far, all is well. He has had a number of ct scans and a followup colonoscopy with all clear and labs are good. But, each time we have to go see the oncologist, it is nerve racking. Since his recovery he has gone back to finish school and is working full time. Keep the faith. This is a great site for support. More than I got from some of the Doctors.

[Magnolia]

I know a woman who has been living with Stage IV disease for nine years. Our moderator Molly's been disease free for I don't know how long. Some do better than others, but there are LOTS of Stage IV survivors. Cure rates are not as high in Stage IV, but cure is not unheard of. Long term survival is more common than it ever was before. There's hope. Hang in there.

[Jeremiah]

Stage 4 here. Diagnosed April 18, 2008 at age 32. Liver mets and it has now returned in my lymph nodes.

[Montrealer]

My dad also has been diagnosed Stage 4... liver mets, we just knew yesterday, been hard for the whole family, but I believe in him...

He's having his 10th round of Folfox tomorrow, hopefully chemo alone with cure him since he's been tolerating chemo extremely well................................................................

[missjv]

im still alive and well after being diagnosed with stage 4 liver mets june of 06. went through liver resection 1 year ago and as of most recent scan all is clear and i feel great. will it come back?? who in the hell knows. will i die from it?? don't know that either any of us could die from anything. i saw two fatal accidents over the thanksgiving holidays i bet those people didn't have a clue that they were going to die on the roads so if you have cancer or know someone who does you can't really dwell on the survivor issue. im a firm believer if you can go to a large comprehensive cancer center that specializes in your type of cancer you might have a better chance. i was told i was not resectable and nothing could be done but palliative chemo here in my home town by a general onco and a surgeon. luckily i went to a large cancer center and got the ass opposite information and have been ned for almost 1 year. i was resectable and was never given any kind of timeline regarding survival like i was given by my first doc who told me stage 4 people generaly do not survive after 2 years. well im a people but im not all people so i didn't really believe that. so far so good keeping my fingers crossed and if it comes back i will deal with it again.

missjv

[tcolitti]

I am an 8 year Stage IV survivor, I had a liver resection to remove 7 lesions from both lobes,(along with half my colon, appendix, and gallbladder) I had a year of 5fu/leucovorin (3weeks on-1 week off). I was diagnosed at age 35(Nov 1999). I was always positive and never thought twice about not being here, I had three children and was trying to adopt another at the time of dx, dying was not an option!
Keep strong, pray, and stay positive.

Todd Colitti
Connecticut