I'm New - Stage 4 w/ liver mets

hillby · June 2005

Hi out there,
My husband was diagnosed in Feb 05 with Stage 4 colon cancer with numerous liver mets. He turned 51 yesterday and we have 4 kids aged 5,7, 8 and 9 (we had fun). He had a CT scan after 6 roounds of chemo and we were told this would not be a curative treatment for him. I am trying to be strong but have inward eyeball disease (I'm feeling sorry for myself and my kids) at the moment. I have been so hopeful over the last several months, but after the CT scan I have become more worried that the doctors may be right.
He goes in tomorrow for his 8th round of chemo and is the light of my families life. Honestly, if you were to see him, you would never guess anything was wrong with him - he looks great. His CEA tumor marker started at 466 and is down to 5. How can the cancer be dying and yet still be all over his liver? I don't know what to believe.
Someone out there please tell me he REALLY has a chance of beating this. I always believed it, but my doubts are growing as we near the end of the initial prescribed 12 rounds of chemo.

HELP

Hilary

CAMaura · June 2005

Dear Hillary,

I am relatively new to the site - and just about everybody here knows more than I - but I would like to welcome you and wish your family well.

There is a wealth of inspiration and information from the members here.....as well as courage and faith. Just wait for the replies to appear!

Wishing you all the best and thank you for joining. We are so happy to have you!!

Cheers,
Maura

melody36911 · June 2005

Hi Hilary
I understand your sadness when doctors speak of the treatment as palliative and non-curative. My father has colon cancer (diagnosed 11/04) and recently a doctor said that his cancer treatment may end up being more for life sustenance rather than a curative treatment. When you look at your loved one and see what looks like a healthy person it is hard to fathom loosing them. The thing is, colon cancer treatment can keep a person going a long time. Maybe enough time so that a cure might be found. There are new treatments coming out every day. I believe this on good days. On other days, I just feel like I can't face where this might be going. Please keep posting and let us know how he (and you) are doing.

PhillieG · June 2005

Hi Hillary, I was 46 at the time I was diagnosed with stage IV colon cancer with liver metastisis (feb 04). I felt great and had no symptoms either. My first doctor told me it was inoperable and they were just going to try to control the cancer. I switched doctors and now I am part of a clinical trial where they installed a hepatic pump that puts chemo right on the liver, and I receive systemic chemo too. They removed 60% of my liver plus they did do an ablation to my liver, they froze part of it where the hepatic artery feeds blood to the liver. I had a tumor right on that spot so they couldn't cut that one out. They pump put chemo directly into my liver to get any stray cancer cells. I also had a part of my colon removed (no bag needed) and my gallbladder out too.

What type of chemo is your husband getting? I was on the FOL-FOX chemo (FOLFOX, which is oxaliplatin/5FU/leucovorin) plus I had Avastin, which has been getting a lot of good press lately.

I have finished chemo. I've had a total of 24 so far. I've been back to work full time since mid January and things are going well. So, being since I've been there and am here now, I would say it is beatable. I have to be scanned every 3 months and stay on top of things. Just try to make sure your husband is getting the best care available if possible.
Phil

kangatoo · June 2005

PhillieG said:
Hi Hillary, I was 46 at the time I was diagnosed with stage IV colon cancer with liver metastisis (feb 04). I felt great and had no symptoms either. My first doctor told me it was inoperable and they were just going to try to control the cancer. I switched doctors and now I am part of a clinical trial where they installed a hepatic pump that puts chemo right on the liver, and I receive systemic chemo too. They removed 60% of my liver plus they did do an ablation to my liver, they froze part of it where the hepatic artery feeds blood to the liver. I had a tumor right on that spot so they couldn't cut that one out. They pump put chemo directly into my liver to get any stray cancer cells. I also had a part of my colon removed (no bag needed) and my gallbladder out too.

What type of chemo is your husband getting? I was on the FOL-FOX chemo (FOLFOX, which is oxaliplatin/5FU/leucovorin) plus I had Avastin, which has been getting a lot of good press lately.

I have finished chemo. I've had a total of 24 so far. I've been back to work full time since mid January and things are going well. So, being since I've been there and am here now, I would say it is beatable. I have to be scanned every 3 months and stay on top of things. Just try to make sure your husband is getting the best care available if possible.
Phil

Hi Hilary and welcome to our "family". In as much as it would have been nicer to meet under different circumstances I think you will find everyone here very helpfull. Although I am only stage 2, Jen and I are fully aware of the frustration that is put on spouses, family and friends. The "not knowing" syndrome eats at our very souls no matter what stage we are at. We know my cancer could metastisise at any time but seek comfort in the very fact that those who are at stage 3 or 1V are able to continue the fight and continue to survive. There are many here Hilary that are a tower of strength to us all..and many who are stage 1V that have proved statistics wrong.
Never say never Hilary.....your hubby can beat the statistics too!
Our love, prayers and support to you both, kanga n Jen

2bhealed · June 2005

Hi Hilary!

Welcome. So glad you found us but not under these circumstances.

Our resident Stage 4 Stellar Survivor Stacy can give you much hope. Maybe she'll join us and give you her story.

You have the harder row to hoe, I think, as the caregiver to your hubby, not to mention the cheerleader of the family.

My survivor story is this:

Stage 3 lymph pos zero mets sigmoid colon cancer dx'ed almost 4 years ago. My baby was 20 months old and still nursing. I was 39, mother of 5. My sister had died of intestinal cancer 9 years before my dx. I was scared no doubt.

I chose, after much prayer and research, to not do any chemo and instead embraced Eastern Medicine healing modalities. I use Western diagnostics though going to Mayo Clinic in Minnesota.

They removed my tumor and that's all.

I decided that since colon cancer is 80% dietary related it made sense to start there in hopes of curing it. After reading many many books I decided on a 2 way approach--juicing and macrobiotics. I juiced fresh organic veggie juices, added protein, flax seed, and GREEN powders (wheat grass etc) and ate a totally vegan diet based on whole grains, steamed veggies, nuts and some fruits. I cut out ALL processed foods, whites, animal fats etc.

Cancer feeds on sugar so sweets had to go.

I learned how important DETOXING is to curing disease....especially the liver since that is the "workhorse" of the body.

My oncologist watched me closely and I continued to see him every 6 months for testing. He never failed to encourage me to do the chemo.....UNTIL.....

HE was dx'ed with colon cancer 2 years ago and so I gave him my book list of alternative cancer healing books and, bless his heart, he READ them!! His wife went out and bought the books. My oncologist at the world-renowned Mayo Clinic is JUICING to heal his cancer!! That has GOT to mean something, eh? He told me during our last phone conversation that , " there is no scientific evidence that juicing works, but I know it WORKS!" HA!

Anyway, if you are interested in complementing your husband's treatments I would be happy to share any info I have acquired over the past 4 years of being ALIVE! :-)

But at the get-go here is a suggestion:

Beating Cancer With Nutrition by Patrick Quillin

It is the "bible" of cancer healing supplements to take during chemo.

hope this helps to give you hope. We all need it. Everyday.

peace, emily who has speed dial to her www.discountjuicers.com (haha)

BusterBrown · June 2005

Hillary,
Im a 43 year male and I was dx with stage 4 crc w/ liver mets on December 17, 2004. I had a 2.5 cm tumor in my sigmoid colon and three 1cm lesions on my liver, 1 lesion on one node, and the other 2 on the other node, so resection was out of the question. My Onc started me on the folfox regiment, after 3 cycles I went and had a ct scan done and miracuously the lesions were no longer visable on my liver. Three cyles later, the Onc ordered a PetCtscan and, again, the three lesions were no longer visable and my primary tumor shrunk from 2.5 to 1.9. After 8 weeks and another positive CT scan, the Onc decided that it was time we removec the primary tumor in my colon. I had that done two weeks ago yesterday, and I'm happy to report that everthing went fine and I'm already back at work. I meet with my Onc next week and we'll discuss what's next for me, it looks like like at least 4-6 my cycles of chemo. After that I hope to say that I'm cancer free...
My advice to your husband it to take it one day at a time and try to enjoy life. I do the best I can to tune out the fact that I have cancer, I do this by staying busy.
I wish you and your husband well, if you have any questions please feel free to ask...
Buster

JKendall · June 2005

Hi Hillary....My wife was diagnosed in October, 2004 with Stage IV colon cancer, but her mets were to the ovaries and some lymph nodes, nothing detected in the liver or lungs. She had part of her colon removed (no bags either) and a complete hysterectomy. Shes' 47 and we have two kids, the youngest is 18. In the beginning, we also heard that her situation was not curable, but they could likely extend her life with treatment. We were shattered because just six or eight months prior to her diagnosis, you never would have guessed that this terrible thing was growing inside her.

Jerri's doing very well now. She completed most of the prescribed radiation, until it made her too sick to continue. She did half of the prescribed chemo (FOLFIRI), until it also made her wretchedly sick. Then she was blessed with a clear PET scan last month, so the doctor agreed to let her stop the chemo. If you passed her on the street, you probably would not guess she was so sick just six months ago.

There are several long-term survivors on this site. You will hear from them, and their stories are inspiring. Everyone here is a fighter.

Like you, being a caregiver has been heartbreaking, frustrating, maddening...you name it, I'm sure you've felt it. I have. The folks here are VERY supportive and very smart (common sense and book smart). Take comfort in their words.

Sorry for the length of this.

Try not to let this stuff get you down, and take care. You'll see...there is LOTS of hope.

Jimmy

scouty · June 2005

Hi Hillary and I like everyone else is sorry you have to be here but reality does stink sometimes.

Hit while the fire is hot in regards to his low CEA. That means the chemo has done it's job. Now it is time to help his body fight the ****. Follow Emily's recommendations. I did and feel really good right now. I am Stage IV, dx March 2004. I did chemo for 8 months and then the sided effects started really getting to me. I did loads of research and decided once my CEA was at 5.0 I would stop it and trust my body and the foods God gave us to eat. Nov. 04, my CEA was 5.1 and I jumped at the opportunity. I had bought a juicer and completely changed my diet. All organic and natural. I also found a local naturopathic doctor (someone with a PhD in clinical nutrition) to help with the overwhelming supplemental choices.

Flash forward to today, I have now been doing the regime for 7 months and my liver tumors are going and the one in lung has already gone. My rectal tumor wasn't even present on my last CT scan. I feel and look great (less grey hair then I had years ago). I believe in helping one's body fight the beast. I also believe in minimizing the toxins one is exposed to on a daily basis. My philosophy is to minimize that aand then boost my own God given immune system to fight with. I boost it as often as I can.

Email me if you are interested in more. You can help you husband and yourself. The kids can get involved too if you do it right.

I wish you the very best and please keep us posted.

Lisa P.

kangatoo · June 2005

scouty said:
Hi Hillary and I like everyone else is sorry you have to be here but reality does stink sometimes.

Hit while the fire is hot in regards to his low CEA. That means the chemo has done it's job. Now it is time to help his body fight the ****. Follow Emily's recommendations. I did and feel really good right now. I am Stage IV, dx March 2004. I did chemo for 8 months and then the sided effects started really getting to me. I did loads of research and decided once my CEA was at 5.0 I would stop it and trust my body and the foods God gave us to eat. Nov. 04, my CEA was 5.1 and I jumped at the opportunity. I had bought a juicer and completely changed my diet. All organic and natural. I also found a local naturopathic doctor (someone with a PhD in clinical nutrition) to help with the overwhelming supplemental choices.

Flash forward to today, I have now been doing the regime for 7 months and my liver tumors are going and the one in lung has already gone. My rectal tumor wasn't even present on my last CT scan. I feel and look great (less grey hair then I had years ago). I believe in helping one's body fight the beast. I also believe in minimizing the toxins one is exposed to on a daily basis. My philosophy is to minimize that aand then boost my own God given immune system to fight with. I boost it as often as I can.

Email me if you are interested in more. You can help you husband and yourself. The kids can get involved too if you do it right.

I wish you the very best and please keep us posted.

Lisa P.

There you go Hilary!! Check out all these wonderfull people here who ARE beating this horrid thing!! Inspirational and incredibly strong positive people who are belting tha hell out of cancer. Can it be done? YES! Never say never!

Shandle · June 2005

scouty said:
Hi Hillary and I like everyone else is sorry you have to be here but reality does stink sometimes.

Hit while the fire is hot in regards to his low CEA. That means the chemo has done it's job. Now it is time to help his body fight the ****. Follow Emily's recommendations. I did and feel really good right now. I am Stage IV, dx March 2004. I did chemo for 8 months and then the sided effects started really getting to me. I did loads of research and decided once my CEA was at 5.0 I would stop it and trust my body and the foods God gave us to eat. Nov. 04, my CEA was 5.1 and I jumped at the opportunity. I had bought a juicer and completely changed my diet. All organic and natural. I also found a local naturopathic doctor (someone with a PhD in clinical nutrition) to help with the overwhelming supplemental choices.

Flash forward to today, I have now been doing the regime for 7 months and my liver tumors are going and the one in lung has already gone. My rectal tumor wasn't even present on my last CT scan. I feel and look great (less grey hair then I had years ago). I believe in helping one's body fight the beast. I also believe in minimizing the toxins one is exposed to on a daily basis. My philosophy is to minimize that aand then boost my own God given immune system to fight with. I boost it as often as I can.

Email me if you are interested in more. You can help you husband and yourself. The kids can get involved too if you do it right.

I wish you the very best and please keep us posted.

Lisa P.

Hi Hillary! Welcome to this site where the semi-colons ROCK! I'm another stage IV. My story mirrors Lisa's. I have gone through the chemo & then Dr. took me off as liver stabilized. ..but my CEA was going up???)I had a lung tumor that reared it's ugly head and I am currently being treated for that with radiation. About when this all happened, I took matters into my own hands and focused on nutrition. I've been at it now for a couple of months or so, but really hammered down the last 5-6 weeks, and it has paid off! Liver spots on hands has faded to almost nothing.. hair is much deeper and richer in color... and here's the amazing part... I was only about 7 days into my radiation treatments, when I cut out all meds, and breathing treatments I was taking to help open my airway. (My tumor blocked my left lower lobe!)
I was able to breath easier!.. then I asked my Radiologist.."Is it possible that I could be feeling the effects so soon from these treatments?" He said "NO.." It takes about two weeks or so. Well... that meant my own system was kicking some butt, and was doing the job prior to the radiation taking effect! How about that!?
I feel pretty good too! My Naturopathic Dr. is very happy I'm doing everything right. He said I'm "Empowered" meaning I have a powerful drive and in control. He added that I won't be the typical stage IV statistic, as I have stepped up to the plate and have taken nutritional steps to cure myself, and should live a looooong and healthy life! I'm about half way through my radiation treatments, and I can't wait to see my next CT scan and lab work. It should blow the Dr.s away! I truly believe I'll be clear very soon, and will continue on my diet for many years. I'll be happy to share anymore infor as well. I have a web site here (under the name shandle) and your welcome to write to me. Bless you for being such a loving caregiver and to help your hubby through all this. I know it's tough and can be a heavy load at times. We're here for you, so stay in touch. Hope I've helped you or encouraged you?! ~ Hugggs ~ Wanda
....aka... Xena cancer warrior
(embrace life!)

madu · June 2005

Hey Hilary,

I was diagnosed with stage IV rectal sigmoid cancer with a met to the liver at age 31. I had my liver and colon resected at time of diagnosis, did 8 months of 5FU and leucovorin and 28 days of radiation. I have been NED since 1/99 with a diagnosis 8/98. How's that for hope?! My onc and I discussed RFA - radiofrequency ablation or a hepatic artery port if the mets came back in the liver but they never did. I can't say I did anything special - I certainly didn't have the newer drugs that are out now - all I can say is I NEVER gave up hope I just believed that if 1 of 4or 5 could make it to the 5 year mark that there was NO reason I couldn't be the one. About a year ago, I casually mentioned to my onc as we walked out of the treatment room that I always knew I only had a 20-25% survival chance and my onc just got this look on his face and said, "Heidi it was much worse than that I just couldn't tell you that".

Many pages ago I posted a link to an article called the Median is not the Method by Stephen
J. Gould- that might put the whole "odds" thing in perspective. You should be able to do a search for the link here or on the web.

Hope this helps!

Heidi

turtletrot1 · June 2005

PhillieG said:
Hi Hillary, I was 46 at the time I was diagnosed with stage IV colon cancer with liver metastisis (feb 04). I felt great and had no symptoms either. My first doctor told me it was inoperable and they were just going to try to control the cancer. I switched doctors and now I am part of a clinical trial where they installed a hepatic pump that puts chemo right on the liver, and I receive systemic chemo too. They removed 60% of my liver plus they did do an ablation to my liver, they froze part of it where the hepatic artery feeds blood to the liver. I had a tumor right on that spot so they couldn't cut that one out. They pump put chemo directly into my liver to get any stray cancer cells. I also had a part of my colon removed (no bag needed) and my gallbladder out too.

What type of chemo is your husband getting? I was on the FOL-FOX chemo (FOLFOX, which is oxaliplatin/5FU/leucovorin) plus I had Avastin, which has been getting a lot of good press lately.

I have finished chemo. I've had a total of 24 so far. I've been back to work full time since mid January and things are going well. So, being since I've been there and am here now, I would say it is beatable. I have to be scanned every 3 months and stay on top of things. Just try to make sure your husband is getting the best care available if possible.
Phil

Although you did not mention recurrence, the stage IV with liver reflects my husband's condition. He starts FOLFOX7 Tuesday...sounds like what you had. You give me hope. Keep on winning!!

taunya · June 2005

Hillary,
You can't let this get to you. It is so hard to be positive sometime, but you have to keep the faith. Someone here told me FEAR is forgetting everything is alright. They were right.
Try not to let the stats get to you. They are averages and do not apply to most people.
Hang in there and vent here when you need to. The people here have a wealth of info and are wonderful on top of it.

Taunya

grmjudy · July 2010

esophageal cancer that has mets to the liver
My husband starts chemo for the liver next week and we have been told it is not curable but will try and shrink it. Has anybody heard of any alternative meds such as diet supplements to get rid of the cancer. Has anybody ever survived this type of cancer. He had surgery over a year ago for the esophagel cancer and had chemo , radiation and more chemo. We knew it would problably come back back not so soon.

I guess I just want to have some hope.

grmjudy · July 2010

Shandle said:
Hi Hillary! Welcome to this site where the semi-colons ROCK! I'm another stage IV. My story mirrors Lisa's. I have gone through the chemo & then Dr. took me off as liver stabilized. ..but my CEA was going up???)I had a lung tumor that reared it's ugly head and I am currently being treated for that with radiation. About when this all happened, I took matters into my own hands and focused on nutrition. I've been at it now for a couple of months or so, but really hammered down the last 5-6 weeks, and it has paid off! Liver spots on hands has faded to almost nothing.. hair is much deeper and richer in color... and here's the amazing part... I was only about 7 days into my radiation treatments, when I cut out all meds, and breathing treatments I was taking to help open my airway. (My tumor blocked my left lower lobe!)
I was able to breath easier!.. then I asked my Radiologist.."Is it possible that I could be feeling the effects so soon from these treatments?" He said "NO.." It takes about two weeks or so. Well... that meant my own system was kicking some butt, and was doing the job prior to the radiation taking effect! How about that!?
I feel pretty good too! My Naturopathic Dr. is very happy I'm doing everything right. He said I'm "Empowered" meaning I have a powerful drive and in control. He added that I won't be the typical stage IV statistic, as I have stepped up to the plate and have taken nutritional steps to cure myself, and should live a looooong and healthy life! I'm about half way through my radiation treatments, and I can't wait to see my next CT scan and lab work. It should blow the Dr.s away! I truly believe I'll be clear very soon, and will continue on my diet for many years. I'll be happy to share anymore infor as well. I have a web site here (under the name shandle) and your welcome to write to me. Bless you for being such a loving caregiver and to help your hubby through all this. I know it's tough and can be a heavy load at times. We're here for you, so stay in touch. Hope I've helped you or encouraged you?! ~ Hugggs ~ Wanda
....aka... Xena cancer warrior
(embrace life!)

diet
Since my husbands cancer has mets to his liver we are looking at diet too. How do I get to your web site ? What about the sites that offer cures for money like the CTT diet? Does anyone know any thing about that one .
Thank you grmjudy

Nana b · July 2010

grmjudy said:
esophageal cancer that has mets to the liver
My husband starts chemo for the liver next week and we have been told it is not curable but will try and shrink it. Has anybody heard of any alternative meds such as diet supplements to get rid of the cancer. Has anybody ever survived this type of cancer. He had surgery over a year ago for the esophagel cancer and had chemo , radiation and more chemo. We knew it would problably come back back not so soon.

I guess I just want to have some hope.

Hi
Stage !V cancer with liver mets. Went though Chemo, liver resection and went on a healthy diet. Staying away from beef and meat as much as possible. I eat lots of salads and purred juices that are organic. You get used to the diet, and my husband and I love it. When diagnosed I craved sugar and I am not a sugar person at all, so I cut that out real quick!!!

I do
Juicing
Vitamin D3 1000
Calcium 1000
B-12
Vitamin E 400
Vitamin C 1000
Baby Asprin

Now and then I take Fish oil capsules but I hate the taste or should I say burp...

I just started back on Aloe Vera and added Supreme Green Powder. I plan to add Acai Berry soon

I drink lots of water and exercise by walking.

I have been cancer free since August of 2009. Almost one year!

It can be done...it can be prolonged, how long I don't know, but I am doing all I can to live!

herdizziness · July 2010

grmjudy said:
esophageal cancer that has mets to the liver
My husband starts chemo for the liver next week and we have been told it is not curable but will try and shrink it. Has anybody heard of any alternative meds such as diet supplements to get rid of the cancer. Has anybody ever survived this type of cancer. He had surgery over a year ago for the esophagel cancer and had chemo , radiation and more chemo. We knew it would problably come back back not so soon.

I guess I just want to have some hope.

Hope is sometimes all we need
That's all I wanted too, was hope. And after my last CT scan I got it, Hope, big time.
I was offered Hospice in February of this year, suggested rather then do chemo, that I go home and enjoy my time left with family doing what I wanted.
I went on chemo anyway, almost stopped it a month ago, because what was the point? They said my liver was beyond help, no resection, no transplant.
TODAY, my liver tumors are down to two and are small enough to do a resection, the tumors in my right kidney and ovary are gone. The sigmoid tumor is still there, but smaller and looking at possible surgery to remove uterus that, that tumor has attached to. (Um, your husband won't have that problem).
I haven't changed my diet a bit, didn't want to stress my body, Lord knows how it might of objected to vegetables!!! I still eat my red meat (grilled hamburger and Coney dog with cheese yesterday, roast beef the day before, steak before that, you see where I'm going with this, I eat all the wrong stuff, but my counts continue to drop, my tumors continue to shrink) one needs to do what one feels is good for their body. If that's juicing then do juicing, but don't force him, I think the stress of eating what you dislike and giving up your favorites is worse for the body.
However, since I do have surgery coming up, I'm cutting down on my coca cola's, upping my fresh water intake and even yes, even eating vegetables. (But only the ones I like).
So is there hope? Always and truly there is. Don't give Hope up. I almost did, then I got it back, now I plan on watching my grandchildren grow some more, my two children graduate from college. I'm 51 and hope is staying alive for me.

I'm New - Stage 4 w/ liver mets

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