The Colon Club

Hi all,

I was Dx with Stage IV (with significant liver mets affecting all lobes) sigmoid colon cancer in Mar 2017 and have just finished my treatments in early Dec 2017. My CEA was at 2.5 in Jun 2017 before liver resection (x2 times, one for each lobe) and after that it went further down to 1.5 and stayed that way until now. My last PET scan was done in Jan 2018 and I was NED with 2 stable nodules in my lung suspected to be granuloma (please see my signature for details). The doctor who did my liver resection told me I have 60% chance of having a recurrence and reminded me not to freak out because a lot of people just needed VATs or RFA or something to remove small mets if their locations are not bad. My oncologists are keeping watchful eyes on my bloodwork and reminded me to stay positive.

I have been on this forum since diagnosis and have seen quite a lot of people's signatures said they are Stage IV and currently NED. I would love to hear from you especially on the several questions here:
1. Anybody who has had a recurrence (or more) but didn't need chemo? Just surgical removal of the mets?
2. Anybody who has had no recurrence at all, or anybody you know had no recurrence? The doctor kept telling me I have 40% chance of having no recurrence but I don't see that many cases here, may be they just don't bother report back?
3. I saw a few of you shared here the chance of recurrence or a complete cure depends on a few factors (like age, any chronic disease, clear margin from surgeries, lifestyle etc.). My doctors don't really agree with this kind of "formula" of estimating chance of any direction this disease takes , what's your view on this?
4. I saw a lot of you have HAI pump done, how's the feeling of having chemo pumped to your liver? Are the side effects as bad as FOLFOX? (I was very blessed to have gone through 13 rounds of FOLFOX without any major neuropathy problems, now almost all gone )
5. Those at NEDville already, is there a special diet or advice you can share to increase chance of staying in NEDville for longer? I heard baby aspirin, curcumin, no meat, antioxidants, anything else?

I know I have to live life as if recurrence isn't even a topic, but I am afraid the happier I am now, the harder I will fall if (knock on wood) it comes back, so I want to be prepared mentally.

Thank you so much for your help!!!

I'm bumping this thread back up to the top. KNOW there are many people out there who are stage IV survivors (many in NEDville). They just do not check in as often. If you do a search, you will find other threads asking the same question.

Know that it is possible to beat this cancer and MANY stage IV people have.

Exercise is a great start (by some reports by 50%). So if you are not exercising now, find something you enjoy and stick with it.

Lee

Stage IV patient here who also had a liver resection done in February of 2015.

Some advice I can give you is honestly, take what doctors say with a grain of salt. For your doctors to say there is no "formula" of estimating your chances is just total BS in my opinion.

I read all the stats and know about stage IV survival but I really think we can give ourselves an edge if we work hard to take care of ourselves. Your life is too important to just leave your fate up to the doctors and hope for the best. That means lifestyle changes and making adjustments in your life to give yourself the best chance of getting through this.

I don't know what would have happened to me if I kept doing the same stuff (post surgery) as I did (before surgery) but all I know is I made drastic changes in my life such as diet and exercise and it seems to have helped so far. I can't prove it scientifically unfortunately but maybe it's why I'm NED today after a Stage IV diagnosis three years ago.

Tough love but please don't listen to doctors when they say there's nothing you can do to decrease your chances of recurrence or overall survival. They are basically full of sh!t to be quite frank and they refuse to believe anything that can not be scientifically proven in a million studies over a million years.

BE YOUR OWN BEST ADVOCATE!!

PS Eating walnuts or tree nuts regularly has reduced recurrence rates in colon cancer patients by about 42%, google it..

I'm bumping this thread back up to the top. KNOW there are many people out there who are stage IV survivors (many in NEDville). They just do not check in as often. If you do a search, you will find other threads asking the same question.

Know that it is possible to beat this cancer and MANY stage IV people have.

Exercise is a great start (by some reports by 50%). So if you are not exercising now, find something you enjoy and stick with it.

Thank you so much Lee. Appreciate it. Have been receiving a lot of bad news lately from fellow patients perhaps not making it, so I got freaked out a little.
I have been looking at all the exercises I can do, 50% is a lot! Will try swimming, though a bit concerned about the chlorine in the pool...

Will go do a search again, perhaps I wasn't using the right words when I did the search, English as a second language ...

Some advice I can give you is honestly, take what doctors say with a grain of salt. For your doctors to say there is no "formula" of estimating your chances is just total BS in my opinion.

I read all the stats and know about stage IV survival but I really think we can give ourselves an edge if we work hard to take care of ourselves. Your life is too important to just leave your fate up to the doctors and hope for the best. That means lifestyle changes and making adjustments in your life to give yourself the best chance of getting through this.

I don't know what would have happened to me if I kept doing the same stuff (post surgery) as I did (before surgery) but all I know is I made drastic changes in my life such as diet and exercise and it seems to have helped so far. I can't prove it scientifically unfortunately but maybe it's why I'm NED today after a Stage IV diagnosis three years ago.

Tough love but please don't listen to doctors when they say there's nothing you can do to decrease your chances of recurrence or overall survival. They are basically full of sh!t to be quite frank and they refuse to believe anything that can not be scientifically proven in a million studies over a million years.

I'm so thankful for your reply. Feel very encouraged and you are funny! Like that part with a million studies over a million years...

I was actually quite happy when I read a thread here mentioning the "formula" and I calculated my chance, which should be quite good... All happy until my excitement was totally shot down after my doctors thought the formula is just BS... Ok, I won't listen to them no more they are so depressing, they are good doctors but a bit conservative...

btw, congrats on your NEDville citizenship !

I was diagnosed in December 2008 (stage iv colon cancer, mets to omentum). Had my surgery in January 2009 (regular right colectomy, not HIPEC). I went through 6 month chemo, was done with it in July 2009. I was actually a bit crazy at that time. I decided not to eat meat anymore (and I didn’t for about a year), only fresh uncooked fruits and vegetables, no alcohol. I was taking supplements resviratrol, vitamin D, aspirin, turmeric. I don’t do any of it anymore, I don’t know if it helped at the beginning of my journey. Cancer left such a scar on me - emotional mostly. My brain didn’t return to pre-chemo ability. My memory is horrible.
I was given 30% chance of survival because I didn’t have any positive lymph nodes.
I remember I was searching internet for stage 4 survivors. It gets easier when you accept your life, any outcome.

Answers:

1. I had a "possible" recurrence that turned out to be a benign granuloma so I didn't have chemo after it. However, my onc is conservative so she would absolutely make me do chemo after any recurrence. She saved my life so I tend to go along with what she says.

2. Your odds of recurrence depend on so many factors. Sometimes there are stray cancer cells still hanging out. Sometimes there is a tiny met that wasn't visible in any CT scan and it decides to grow. I think the important thing is to keep your immune system healthy so it can recognize any intruders and kill them. That means relatively clean living, generous amounts of exercise, healthy food choices, and supplements to boost your immune system.

3. My onc does in fact use a formula for estimating the odds of recurrence. It involves genetic factors, surgical outcomes, life style choices, etc. Have you had genetic testing done on your tumor?

4. I am one of the HAI pump patients. I felt absolutely nothing from the chemo in the pump. Besides the chemo in the pump, however, you are also given a systemic chemo so I did have side-effects from it. But not from the 5FU in the pump. If you have a recurrence in your liver, I'd strongly recommend getting a second-opinion with Dr. Kemeny at MSKCC and seeing if the HAI pump is an option for you.

5. I take curcumin and vitamin D3 + K2 (MK7) supplements every day. If you haven't had your vitamin D checked, I recommend you do so. Most CRC patients are woefully low in vitamin D and need supplements to bring it up to the normal range. I've been working on my levels for a year now and have just made it to the lowest level of acceptable.

Congratulations on becoming a new citizen of Nedville! I was just as scared as you when I finished treatment. It's part of the recovery process to have panic attacks about "what if's." But don't let that stop you from living life to the fullest. You're alive. You're breathing. You're getting stronger every day. The best way I found to move forward is to build new experiences one day at a time. I haven't lost the fear and dread of a recurrence yet, but it has softened some. When it roars back, I confront it until it's been put back in its place in the background. Sometimes, it's one step forward and two back. But, then all of sudden there are 10 steps forward without even noticing it. Go forward. You are not where you've been, you are not yet where you are going, but you are on your way.

Hugs to you!
Juliej

Dear Juliej,

Your post made me all teary-eyed.... so touched! Has anybody told you you write really well? I used to love writing but after chemo I think I've lost the ability to put my thoughts and feelings in writing efficiently.

3. My onc does in fact use a formula for estimating the odds of recurrence. It involves genetic factors, surgical outcomes, life style choices, etc. Have you had genetic testing done on your tumor?

No unfortunately I didn't. I didn't receive treatments or had my surgeries in the states, and genetic testing on tumors is not that popular here, so I didn't have that. By the time I knew genetic testing could be done, it was too late. My onc (x2) do not use a formula, one of them probably does secretly, at the end of one consultation he said to me quietly "I think you will get well and be well". That's the only positive message I could hold on to throughout my journey until now.

Congratulations on becoming a new citizen of Nedville! I was just as scared as you when I finished treatment. It's part of the recovery process to have panic attacks about "what if's." But don't let that stop you from living life to the fullest. You're alive. You're breathing. You're getting stronger every day. The best way I found to move forward is to build new experiences one day at a time. I haven't lost the fear and dread of a recurrence yet, but it has softened some. When it roars back, I confront it until it's been put back in its place in the background. Sometimes, it's one step forward and two back. But, then all of sudden there are 10 steps forward without even noticing it. Go forward. You are not where you've been, you are not yet where you are going, but you are on your way.

Thank you for saying all these. Means a lot to me. You are right, I'm not where I have been and I'm already getting back my energy slowly so I can build new experiences anytime now

Hi!
I think JulieJ answered most of your questions.
I am one of the newer HAI pump patients. I had 10+ tumor in my liver so it took 4 surgeries including primary removal and pump placement until finally reached NEDville. So far so good. No recurrence at 21 months after my last surgery in May 2016.
Looking at your signature you didn't have mets in lymph node which makes recurrence less probable according to the calculator. You have 5 good prognostic factors in your signature alone
Go live your life. I try not to think to much. I even can forget about cancer for 15-20 minutes now
Good luck!

I am one of the newer HAI pump patients. I had 10+ tumor in my liver so it took 4 surgeries including primary removal and pump placement until I finally take me to NEDville. So far so good. No recurrence at 21 months after my last surgery in May 2016.
Looking at your signature you didn't have mets in lymph node which makes recurrence less probable according to the calculator. You have 5 good prognostic factors in your signature alone

Oh! I didn't know no lymph nodes involved makes recurrence less probable?
I actually remember reading your posts because the number of tumors in your liver, which also got me curious about HAI pump...

I'm so happy for you being in NEDville! 21 months is no easy task given your Dx. I wish all of us in NEDville forever~

My husband is stage IV and has been off chemo since June 2016. He had nodes pop up in both lungs and after close to a year of stability those nodes were removed. Right lung surgery in November and the left in January.

We are now hoping it stays away for a bit as he is NED.

I don't where I am but like to believe I am there in NEDville.
A few of things I am doing
1. About an hour of yoga everyday.
2. Herbal teas
3. About a litre of veggie juice mainly carrots, beetroots, pomegranate, greens , ginger and fresh turmeric sprinkled with black pepper.
4. 20 30 apricot kernels daily with honey
5. Vegan , low oil diet. Mostly follow mcdougall diet.
6. Just added trampoline exercises 5 10 minutes daily.
7. Try to do some meditation and praying daily basis.
8. Acupressure session every week for improved immunity.

Hopefully, all these steps are helping me arrive at and stay in NEDville.

Best of luck to you and others here on forum. Prayers for all of us.

Hi there. I'm also an HAI patient, it worked miracles for me (still here, and technically NED 8 years after stage IV dx with massive tumor load). Intense chemo did a job on my liver and bile ducts, but I can't complain. Technically I think I had a recurrence after I stopped HAI...but frankly they never did a PET on me, so what appeared was just a small node that CTs didn't catch, and that HAI probably failed to knock out in the first place. In my case, they were indeed able to zap it with SBRT, and no follow-up chemo (not sure if it wasn't indicated, or they didn't want to beat my liver/biliary/marrow up further). Knock on wood, no recurrence in several years since - as confirmed by PET.

Exercise is a fantastic way to reduce risk of recurrence IMHO. Better diet probably is too. I tried to reduce sugar and add fiber, and added Vit D, baby aspirin, coriolus versicolor PSK mushroom, and BCM curcumin. Though I have been slacking off on these supplements for the past few years, I still do as much exercise as possible. As for chemo/FUDR through HAI...the actual treatment itself was a piece of cake, I couldn't tell if/when I had chemo vs saline in my pump if I didn't know.

You've got some great advice here already. And specifically, Julie is an amazing resource and a fantastic contributor to this board...I agree with her comments completely (as I usually do).

Best of luck to you in your continued journey. It's great that you're really educating yourself on ways to reduce odds of recurrence. Someone has to beat the odds, there's no reason you can't be one of those lucky/blessed people!
-Chip

This has been a great thread for me.
My wife was DX a year ago stage 4 rectal cancer with spread to one external iliac node and invasion into the uterus. She did have five spots on her liver, they removed two surgically and they came back as benign hemangiomas. She has since had two liver MRI's since and they feel that the other three spots that have not changed in size nor did they respond to chemo are benign. That worries me as we had a small spike in CEA that maybe one of them is not. The PET scan did not show any activity on the liver.
On the 5th of Feb, our Onc said that he could not see any evidence of disease in her and doesn;t feel that she needs additional chemo, so I guess we have been NED for almost three weeks now. I want to celebrate but don;t know if I should or can.
She is a celiac so she does not eat gluten, however she has also decided to drop sugar from her diet other than on special events. She is young and fit but is now starting to walk and stretch three times a week to try to get her strength back. I wonder if she should take a multi vit and have heard that a baby aspirin can help but she hasn't done that as of today. I hate this disease and have learned that all you can do is try as out come one way or the other is never a guarantee. I hope to have more advice or tips in the future as we go through this and hope to stay in NEDville for a long time and learn from those that are ahead of us.

1. No nodes = good
2. CEA fall to normal values=good
3. your combination of mutation =good
4. clear margin =good
5. histology=good

This is the BEST thing I have ever read about my diagnosis!! I was secretly hoping my doctors would say something like that, especially when I almost had a cardiac arrest from allergic reaction to Oxi and nonetheless pushed through 100% dosage and # of rounds all the way.... Thank you thank you! I mean nobody can say for sure I will be safe, but any positive energy and encouragement can help tremendously!