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stage 4 with mets to liver

eric38's picture
eric38
Posts: 588
Joined: May 2009

I am a 38 year old male who was recently diagnosed with stage 4 colon cancer. Pet scan said there was 3 and maybe 4 mets to the liver. It`s in both lobes and the 3 tumors that showed up conclusively have a high metabolic rate(which means they are really busy).I had my whole ascending colon removed and have just started on my treatments. I try to remain positive but certainly have my days, going from thinking I am going to beat this to resigning myself that I may not live much longer. I`m just trying to cope and need some encouragement from people who have been in my shoes and are still alive and kicking.

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Eric, sorry to meet you here but you are certainly NOT alone. I am Stage IV with mets to liver and lungs. That was over 5 years ago. My liver mets were inoperable at the time. I went on Avastin and FOLFOX and it shrank the liver mets (which were around my hepatic artery and all over the rest of it that they took out 70% or so of it) so that they could operate. The liver as you probably know, will regenerate. The only organ that will do that. Pretty amazing. As far as lung mets go, there are ways of dealing with that too. I have been on Erbitux for the lung mets with very good success. I am still here after 5 years and still in the game and ahead of it even though I've never been NED. Don't give up. I do understand though about how you feel. I've had days when I wish I never knew I had until... and other days that I'm full of piss and vinegar and kicking it's butt.
Hang in there, there is plenty of life after the Dx.
Trust me
-phil

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Welcome to the boards! You'll find alot of us here in the same boat as you, don't fret, I came here and everyone was just lovely..I found out I was Stage 4 CC with a tumor in my liver as well, and that was in January. I am undergoing chemo now, (Folfiri with Avastin) and just had a temporary colostomy done, but You'll see another topic where someone was just dx'd with stage 4 as well, and you'll see a bunch of our stories that will hopefully give you some hope and encouragement! please feel free to ask ANYTHING, everyone is very supportive here, and there is always hope!

Hugssss!
~Donna

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Eric,

I'm sorry for your diagnosis. It is really is a rough time during those early days. It gets better with time.

I'm stage IV with mets to the liver and celiac lymph nodes, diagnosed 22 mos ago. So yep, alive and kicking. You can get the long version of our stories by clicking on our names or pictures to the left. Many of us also have pictures and blogs there. My current status is No Evidence of Active Disease (NEAD). I'm still in treatment which is currently systemic chemo.

I'm LIVING my life. So much so that I would say that I'm a spoiled brat! :P I have learned to live with canzer quite nicely. It isn't my preference, but it is doable. I'm happy and I have a good life. That is my wish for you - peace. You will get there with time and hope.

Hugs and welcome,

Kimby

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thank you so much for the prompt replies. It is very comforting to know that there are people out there who are in my same boat and still thriving. Most of all, that you take the time to post on this site and encourage people.

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thank you so much for the prompt replies. It is very comforting to know that there are people out there who are in my same boat and still thriving. Most of all, that you take the time to post on this site and encourage people.

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

One thank you is enough :-)
Sometimes this system is sluggish so be patient before you hit post again.
-phil

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hi Eric...welcome! Please read back on the posts.. I am the one who recently posted that they upgraded me to a stage IV because of a spot on my liver. It freaked me out too. I have to tell you though... ANYTIME you are feeling down or need answers... or hope...come here. These are the most wonderful people I have met on the face of this earth. They took me out of such despair and gave me hope. They do every day. Visit here often. I have not started any treatments yet but thus far.... this is the greatest medicine I could ever have. Take care

Jennie

Just got PET scan results,,,I'm a mess... HELP That is title of post

impactzone's picture
impactzone
Posts: 429
Joined: Aug 2006

So sorry to hear. Stage 4 here and have had 4 surgeries including liver resection and 2 lung resections, ( last one 1 month ago) My early advice is to get treatment at a major center that deals with this. I am now 3 years out with my dx and I was 47 at the time with 2 younger kids. It is tough and I feel for you. Make an appt now with a liver surgeon after a few treaments you might see results so you would know if that is the chemo you should follow surgery up with. That is what they did at Stanford (for me a 5 hour drive. Ask any questions and I'll be happy to try to reply.
Best wishes
Chip

eric38's picture
eric38
Posts: 588
Joined: May 2009

idolhunters is right. You guys are the best medicine I could have. You take the time to encourage people like me and make me realize despite the odds that the medical community gives you it is possible to beat this. Impactzone - Thank you for the good advice from a cancer fighting veteran. Keep up the good work soldier.

God bless all of you,
Eric

eric38's picture
eric38
Posts: 588
Joined: May 2009

Phil - Everybody here has been through the ringer and has an inspirational story to tell but it is nice to hear from someone who is 5 years out and still kicking.

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Thanks Eric,
There are some out there who have me beat by a mile.
Don't give up, it hasn't always been easy but it's always been worth it.
-phil

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Sorry to hear about your diagnosis Eric. I was diagnosed stage 4 in August '04 and remember going through much of what you have described.

You will find a lot of stage 4 survivors here. Our stories are all a little different but we've mostly all taken a proactive approach towards the management and treatment of the disease, the symptoms, and the side-effects.

Rob; in Vancouver...

"Accept the diagnosis... Defy the prognosis!"

eric38's picture
eric38
Posts: 588
Joined: May 2009

You guys are the greatest.

dmdwins
Posts: 451
Joined: Aug 2008

Sorry to have to welcome you to this site but as you are seeing there are many of us at Stage IV surviving and/or thriving. I was diagnosed Stage IV 10/07 and doing well. You can do it. Hang in there and come here often for support.
Dawn

amcp
Posts: 249
Joined: Jan 2009

If you will go to the post which says....I'm a mess...Help me! and scroll down to you get to the reply There is Hope by amcp...you can read my husbands story and how he was given only two years with chemo...stage 4 with mets to liver ...just finished his last surgery ..liver resection and has a great prognosis.
There is Hope.
Anna

taraHK
Posts: 1961
Joined: Aug 2003

Hi Eric -- welcome to this group and sorry you have cause to be here. We all have the ups and downs you describe -- sounds like you have a great attitude.

I was diagnosed 6+ years ago with Stage III rectal cancer. Have had 3 recurrences, unfortunately -- all at the lung. But, I am currently NED (no evidence of disease)! I have seen my two boys grow up from ages 10 and 12 (at my diagnosis) to strapping 16 and 18 now -- what a joy. I am leading an active life. It is possible!

I wish you all the best with your treatments.

Tara

eric38's picture
eric38
Posts: 588
Joined: May 2009

Very appreciative for all the new posts. It is great to see people in such a serious situation with such a great attitude and to encounter those that defy the odds. Every post gives me more hope.
One practical question for Phil - I am on erbitux too and was just wondering how long it took you to get the rash.

eric38's picture
eric38
Posts: 588
Joined: May 2009

I was wondering what you guys think about nutritional therapy during chemo treatments and if you think its effective after mets has already taken place.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

... ask my onc what I should be eating or taking supplement-wise, only because some supplememts may not let the chemo work the way it should, but my onc always tells me to eat anything, she is happy I keep my weight up, she told me she just doesn't want me wasting away, so I eat what I want, high in calories even, just to keep the weight on, but do eat lots of good salads as well.

eric38's picture
eric38
Posts: 588
Joined: May 2009

Shayenne - Thanks for your little nuggets of info.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Here's another Stage IV colon cancer survivor checking in. I say survivor because I'm still alive, kicking and causing all sorts of trouble in my world . I was diagnosed in Dec 2006 and at the time my surgeon found the tumour, which had perforated through the intestinal wall and an abscess formed around it, he said that the tumour was at least 10 years old. Hmmm... do does that mean I'm actually a 12 1/2 year old survivor since I've had cancer that long? Just food for thought :)

Anywho... the tumour was surgically removed and I had a colon resection at the beginning of January 2007 (they had to wait 3 weeks while I was in the hospital and hooked up to IV antibiotics to try and clear up the serious acute peritonitis which was caused by the perforation and abscess).. then followed by 8 months of chemo and 6 weeks of radiation. In Dec 2007, my CEA was rising and a PET scan was ordered... the cancer had spread to my adrenal gland and my lungs. Grrrrr! That made me a Stage IV. What they don't know is WHEN did it spread? Was this before the chemo, during the chemo or after the chemo? No one knows, but the fact remains it had spread.

Soooo, back to surgery in June 2008 to remove the right adrenal gland. OUCH! I swear that surgery was 10 times more painful than the colon resection surgery... but out it came.

Now, we are in wait and see mode about the lungs. There were 12 "nodules" found in my lungs where one of them lit up and one looks very suspicious. Statistically speaking, all 12 are probably colon cancer mets, but only the one lit up the PET scan. In Jan of this year, I had that met blasted away with an RFA (Radio Frequency Ablation). That leaves me with 11 nodules that currently are not metabolically active (they may just be too small at this point). I go for my next CT scan of the lungs on July 20th to see if there is any activity or new growth. If they are still stable, then it will be another 4 months before the next scan.

Currently, I am not on ANY cancer treatment. I have been 18 months (Wooooot!) since my last chemo treatment. Unfortunately, I am not NED (No Evidence of Disease) because of the lung nodules, but as of March 20th, I am NEAD (No Evidence of Active Disease) since none of the lung nodules were metabolically active.

Oh, and yes when they found out the cancer had spread to the adrenal gland and the lungs, I was told the prognosis is not good. I said I wanted them to be more specific... what does "not good" mean? I was given the 2 months - 2 years maximum talk (and yes, I freaked out!). Well, it is now 15 months since the talk and, as you can see by my picture, other than the sunburnt cheeks, I am not quite ready to keel over any time soon ;)

Stage IV is a label... it's not a life sentence :)

Hugggggs,

Cheryl

eric38's picture
eric38
Posts: 588
Joined: May 2009

I`ve been on here alot lately and every time I post here within a few hours there are new helpful replies. That means alot to me and I`m sure others in my situation. Newbies who are just learning to deal with this need alot of encouragement. Who am I kidding? - we all need it. I`m very grateful and will be passing on my experiences to other people and hopefully along the way I`ll be able to help a few.
Cheryl - it is obvious you are full of vim and vigor. As one of my good friends said to me "You will die eventually, but this is not what is going to kill you."

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

Welcome Eric. I remember how freaked out and seemingly alone I was at my diagnosis. Over time and making connections has definitely changed my outlook. I'm now NED after radiation/chemo, 2 surgeries (rectal and a liver surgery to remove the one met to the liver, and then adjuvant FOLFOX chemo. I've had great support form my naturopath, and acupuncturist as I went through treatments. Helped me sort through the vitamin/supplement questions. The following quote form James Baldwin has been helpsul for me through the process, "Not everything that is faced can be changed, but nothing can be changed until it is faced."

all the best, Leslie

Kathleen808's picture
Kathleen808
Posts: 2270
Joined: Jan 2009

Hi Leslie,
Did you do acupuncture during chemo? Did you do it for nausea? Pain? Acupuncture is quite accepted in Hawaii and my husband is thinking of some treatments.
Thanks.
Aloha,
Kathleen

eric38's picture
eric38
Posts: 588
Joined: May 2009

I am seeing a chiropractor who also does acupuncture. I just started yesterday so I will let you know how it goes but I keep seeing recommendations for acupuncture and chiropractic as a way to help cancer patients. I`ve just started on this journey so I`m still feeling my way around.

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

Yes I did acupuncture during chemo. I did not experience nausea other than some stomach queasiness towards the end (5FU, leukovorin, oxaliplatin). I went twice a week and honestly don't know how I could have made it without my acupuncturist. She also did more body work with the acupuncture as the chemo went on. My body craved the support. It also was fascinating to see my body patterns the week of infusion and the week after and throughout the 10 treatments. My naturopath does acupuncture. I also have an anthroposophical/internal medicine doc on my team too who also prescribes supplements and mistletoe subcutaneous injections. Mistletoe is uused a lot in Europe and is in a clinical trial here in the US. All the supplements etc I also checked out on Sloan Kettering website for herb interactions/cancer treatments too. Here's their link http://www.mskcc.org/mskcc/html/1979.cfm

Leslie

eric38's picture
eric38
Posts: 588
Joined: May 2009

Leslie - Thanks for sharing your story and for the inspirational quote

Kathleen808's picture
Kathleen808
Posts: 2270
Joined: Jan 2009

Hi Eric and welcome,
Everyone here has been tremendous support to my husband and me. We are new on this journey but willing to share what we know.
Aloha,
Kathleen

mikew42
Posts: 113
Joined: Mar 2004

Sorry for the late post, but thought you might like another positive story. I was 41 when diagnosed with Stage 4, 3 mets to the liver. Did 6 months of chemo, then RFA on the 3 mets. My last treatment was October 2004 and have been NED since. This sight was a tremendous help in pulling me through my darker days. Take care and keep us posted. Mike

eric38's picture
eric38
Posts: 588
Joined: May 2009

Mike - Thank you for taking the time to post your story. It is very inspirational since your situation was so similar to mine.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Mike, I love hearing stories like yours as well, it keeps me up and this board has been such an inspiratioin, I can be weepy one time out of the day, and then come right here to get comforted by reading posts like yours, thanks for sharing you story! It really enlightens people.

Hugsssss!
~Donna

menright's picture
menright
Posts: 248
Joined: Oct 2008

Eric:

I too have CC with 3 mets to the liver. I have undergone 3mos chemo...rectal surgery (AP resection) and now have another 3-6mos of chemo....this will be followed by liver surgery. Did you know they can remove up to 85% of your liver and it will grow back. There is hope out there for you and I.

Best of Luck.

Mike

Nana b's picture
Nana b
Posts: 2707
Joined: May 2009

Nov 08, tumor in the acsending colon, stage III, had surgery, 7 out of 15 lymp nodes affected, 2 liver mets then during surgery they found another. I had 60% of my liver resected on 4/18/09. They could have taken more but that could have been a death sentence in inself. With 60%, I was alredy turning jaundice and my surgeon, Doctor Osorio said he would not have taken anymore, because of this they are not sure if they got a clean margin. I was turning a jaudince color, but I am praying that they did get a clean margin. My last pet showed a lit spot in my liver but that coud be the after affects of the surgery. I hope so, if not... come on chemo!

I am back to finishing my chemo next week, treatment 7 out of 12. I think I will walk in for chemo, struting my new wig. Yeah, baby! lol

Hang in there, get the frustrations out and try and live life to the fullest. I was telling my sister just the other day, "I am so bored, but I have no energy to do anything, not even simple things." I think I also get frustrated and have to get myself up and moving, even if it's to do a small walk or water the plants.

Take Care!

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

Eric,

When first diagnosed I had 5 liver mets that were bilobar (3 on left, 1 on right and 1 kind of in the middle). I was told by an oncologist I was not operable. I went for a second opinion at Sloan Kettering who told me that I was close to resection but we would do chemo first. After 4 rounds of chemo the mets shrunk by 40%. I had one more treatment (#5) before my liver resection (which was 4 months after my diagnosis and the "unresectable comment). I had my surgery on 2/20 and the pathology indicated that the FOLFOX had done a number on the mets with the largest shrunk by 80% and 90% necrotic. On 6/18 I go for my next CT scan and hoping/praying for NED again. So be positive!! My doctor told me there is more than a 40% chance for cure and 60% chance for disease-free survival at 60%.

Come here for any questions!!

Amy

JR's picture
JR
Posts: 140
Joined: May 2009

Hello Eric,
Sorry that you had to join us here but I think you will find alot of support. Most of us have experienced what your going through. I'm a 56 year old male who was dx in November of last year. Colon cancer with liver fully involved and mets to both lungs. I know how hard it is dealing with all the emotions when you get the terrible news. But, you will get through it. You have alot of things going for you. Your young and strong and that will help alot in dealing with chemo. You will find many similar stories here. Were all here for you. There is a wealth of knowledge and experience here that you should find very helpful. I know I did.

John

eric38's picture
eric38
Posts: 588
Joined: May 2009

I come here a couple of times a day and am very grateful for all the encouraging posts. Thank you. I am learning to live with cancer and not let it define me.
Mike - it is nice to meet someone in my same boat with such a positive attitude. You are right - there is hope for us.

amcp
Posts: 249
Joined: Jan 2009

Eric you are the same age as our oldest Son. I am so thankul for you for mentioning my husbands success story. I hope that by telling others of his fight against the monster that we can give others hope and knowledge of the vast difference in second opinions. Stage 4 is not a death sentence...cancer can be beaten and if not totally beaten it can be beat back so that you can have a long and happy life. I hope and pray that you are getting the best of care and that you stay positive. Am here to help in anyway I can. Keep fighting...look forward to seeing your success story soon.
In thought and prayer
Anna

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

Sorry Eric to be so late checking in with you. I have had the low downchemo blues this week so I have been sorta out of touch. Eric I was diagnosed with colon c in Jan 05 and by spring 06 I had 7 liver mets both lobes and told to get the old affairs in order. As far as I know it is now spring 09 and I am going strong.
I am from Canada and I have noticed that my liver surgeon did no chemo before-hand...just radical surgery and kid you not....it's a bit tough. Then I had chemo and last Sept another spot on the liver and another re-section and now chemo.

so it's 5 years for me Eric....can't say i have been disease free but I am here and rockin on

you will too. Let me please offer you any help I can

mags

eric38's picture
eric38
Posts: 588
Joined: May 2009

Amcp - there`s a reason I mention your husbands story to people. It is amazing and inspiring. Thank you for the offer of help. It is much appreciated.
Maglets - I understand about the lowdown chemo blues but thank you for sharing your story. When this first began I felt sorry for myself and now thanks to the people on this site you realize no matter how bad you have it there are those who have it worse and have still overcome.

Fb489
Posts: 69
Joined: Sep 2009

Rest in peace dear one

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