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Treatment Options for Stage 4 Colon Cancer?

losbridges's picture
losbridges
Posts: 3
Joined: May 2018

Hello,

My father was recently diagnosed with Stage 4 Colon Cancer that has also appeared in his liver.

We have seen an oncologist in Maine who recommends that we take a low to medium dose of chemo because they think he is currently too weak for his body to handle a high dose. We are going to get a second opinion from the folks at Dana Farber in Boston soon.

We are debating about whether to go with the traditional treatment options we've been recommended or seek an insulin-potentiated or low-dose chemo treatment combined with alternative remedies like CBD oil, viatmin supplements, etc.

At this point, I'd just really like to connect with people who have had positive reactions to different treatment options for Stage 4 Colon Cancer and see what people recommend??

Thanks so much for any and all ideas that anybody out there might have!

-Levi

gul1976's picture
gul1976
Posts: 42
Joined: Mar 2018

My sister, 42,was diagnosed 4 m ago with 4 stage CC with liver mets. She got 4 cycles (every 2 weeks) low dose chemo and today her doctor told that it didnt work at all, Cry. feeling depressed. and looking for new treatment options either.

losbridges's picture
losbridges
Posts: 3
Joined: May 2018

Hi, I'm so, so sorry to hear that. Why did they recommend low-dose? 

 

gul1976's picture
gul1976
Posts: 42
Joined: Mar 2018

She is skinny and always been and with chemo it's difficult to keep weight stable. Her weight badly affect her treatment. 

abita's picture
abita
Posts: 713
Joined: Dec 2017

I am gaining weight on chemo. The fatigue makes me super hungry

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I've gone from 179 to 212 on Chemo. I've started working on it and down to 207 and plan to get back to 180. My problem is that I'm not working out like I used to.

abita's picture
abita
Posts: 713
Joined: Dec 2017

I am not getting low dose as far as I know. My first 4 Folfox shrunk my tumors by almost half. I am not finished treatment. I am finishing on Folfiri. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Some chemos don't work for people whether they're low dose or not. I took one last summer and got an additional tumour while on it, someone else could try it and be amazed at the results. If that's what the doctors want to try first and if the second opinion agrees I wouldn't worry too much about it being low dose. Chemo is hard on a person, no matter which one they choose. Possibly they can make some improvements and get him stronger while he's on the low dose and then hit it hard. 

CBD and/or THC oils should help him feel better, along with some vitamins sych as B, C, and D. If he feels better he'll be better able to tolarate treatments. I've been on several chemos and the consistant thing with all of them- for me, at least- is fatigue. And they have a variety of side effects as well.

Jan

saymyname310
Posts: 3
Joined: May 2018

My doctor found a tumor in my Sigmoid colon, he said it's gonna block my stools soon. He said he wants to cut out my Sigmoid by next week, found on colonscpy done last Friday 

ghoule's picture
ghoule
Posts: 3
Joined: Mar 2018

I had the same thing and went right to the hospital and had surgery the next morning, it went well for me, small scar is all and 3-4 weeks rest. Then I was back to work. Of course they will then say you need 6 months of chemo. It's been 2 1/2 years since my surgery.

Woodytele
Posts: 163
Joined: Apr 2017

im Stage four too.  It probably depends on his current condition and age.  Im 40, and my initial treatment was FOLFOXIri, which is everything they got.  It’s no joke, every two weeks, it’s tough.  I go to DF in Boston too, so you should get good info there. Good luck.  There are no guarantees with chemo, sometimes you respond, some people don’t. There is no formula for success. 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I was diagnosed exactly one year ago. My cancer metasticized through 28 radiation treatments and Xeloda, 3 spots on liver found just before surgery in Oct 17 . Surgery was great to alleviate the largest original tumor in rectum. However. ..I chose to take some time after my surgery to regain my strength before doing more chemo. I have tried quite a bit of natural treatments. Vitamin C intravenously helped my energy. Ozone saunas as well. I take quite a few supplements. I am a big proponent of mistletoe injections. I started these in January of this year. They eliminated my back pain and anxiety, truly make me feel like I'm not sick. However, the cancer continues to grow. I am on Xeloda orally, with infusions of Irinotecan and Avastin every two weeks. I need to watch my diet more closely, as I believe this may significantly improve my situation. I juice frequently. I'm doing some energy work with a Reiki master. I take both THC and CBD oil. I am being seen by both an integrative and traditional oncologist. They work well together. 

My particular CRC will not respond to immunotherapy. I've been told I have a 30 to 40% chance of responding to the chemo. 

Best wishes that your father has a type of cancer that readily responds to the treatments you choose. I am particularly interested in IPT therapy that you mentioned, and will try that next if this round of chemo proves worthless.

It's tough. I try to spend all my days living, not dying. 

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

Levi,    

Do a Search By Keyword (in this forum) for 

Lemanne

Longo

Seyfried

Reynolds

Yale 

See my 2018 posts for each search results.   These will be some things to consider in addition to, not in place of, standard of care.   

Lemanne is an oncologist while Longo and Seyfried are professors/researchers who have done work applicable to cancer.   

Diet matters, but Dr. Colin Champ (an oncologist) has demonstrated that major cancer centers are all over the map in terms of dietary recommendations for their patients, so take what you hear from your father's physicians (if you hear anything at all) in this area with more than a grain of salt unless you know for a fact that they know the literature in this area as most do not.  A common thread is to dramatically limit simple carbs and in some cases overall carbohydrates and at the same time keep protein moderate at best.  

 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Peter, you are so right on. My traditional Onc and surgeon basically tell me I'm fortunate to have a good appetite, and go ahead and eat whatever I want. My integrative oncologist tells me to follow Dr. Longo's advice, do intermittent fasting (which Harvard study recently proved beneficial), and employ a Mediterranean diet at the very least. He will tell my diet is absolutely key to controlling the spread of my cancer. Thanks for reiterating this. I need the kick in the pants every day until I master it. Really tough for me. 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I was diagnosed stage 4 rectal cancer with mets to the liver  in April/May 2015 at age 70.  I weighed  85 pounds  at the beginning of treatment and  my weight has remained stable throughout, although at one  point, just before surgery,  I did gain a few pounds. The initial CT scan showed  that I had "severe centrilobular emphysema"but it had never  been a problem and never required medication and has remained stable   in subsequent scans. I  received 8  Folfox  plus Avastin treatments, followed by 28 chemo/radiation treatments, a liver ablation in August 2016 and abdominoperineal resection (APR) surgery in October 2017, resulting in a permanent colostomy.  I'm now on maintenance chemo of Erbitux and  Irinotecan. You can click on  my "About Me" section for more details of my treatment. So far,  everything is going well,  recent CT scans show no evidence of new metastatic disease. I live a fairly active lifestyle and  am able to enjoy working in my garden and most of the things I did before diagnosis, although I do   tend to  avoid crowded situations because of  a weakened immune system from chemo.

As others have said,  people react differently to treatment, and there really doesn't seem to be  a sure way of knowing just how certain treatments will affect anyone.  I hope your father does well with whatever treatment is finally decided upon and although I am sorry you needed to find this site, I am glad that you have, and hope you find much useful information here as so many of us have.

Grace/lizard44

losbridges's picture
losbridges
Posts: 3
Joined: May 2018

Thank you everyone for the thoughts! That's so helpful. 

One thing our doctors haven't recommended yet is surgury. I keep seeing that many people online have had surgury in the GI tract and/or liver. My father has a tumor in his colon and mets on the liver, but they said they'll only pursue surgury if it interrupts his food degestions/passing. Should we be asking more about surgury?

Trubrit's picture
Trubrit
Posts: 5001
Joined: Jan 2013

I would be asking about the liver mets. I'm sure they plan on shrinking them down before surgery, but if I were you, I would want them to detail you about what their exact plans are. 

I suggest keeping a detailed journal/notebook (your father may already be doing this). Write absolutely EVERYTHING down. Aches and pains, no matter where they are. Reaction to foods. Bloating. Blood. Changes in stool (I'm sure your dad has learned to 'look in the loo after every poo'), you name it, it should be written down, no matter how insignificant you think it is. 

Of course I am talking abuot your dad doing this, not you. Oh, that would be kinda freaky - 'Hey dad, can I look at your.....'  - anyway, I digress. 

I am happy to hear that a second opinion is being sought. It all helps. But be warned. You may very well end up with two completely different treatment options, and that, my friend, can get really frustrating. 

I wish your father the best.  I am always heartwarmed by children who come here looking for help. You're obviously a good son. 

Tru

 

saymyname310
Posts: 3
Joined: May 2018

Last Friday I got diagnosed With a tumor in my Sigmoid colon,  When I awoke up from the colonoscopy, the doctor walked in and was surprised that he found a tumor and it's quite big, so the 1st thing he  Was we are gonna get it out. I get  My results tomorrow morning, and he wants to remove my sigmoid by the beginning of next week. He said, you don't leave things like that in, gotta get it out.

 

 

 

 

Trubrit's picture
Trubrit
Posts: 5001
Joined: Jan 2013

I had a colonoscopy and my tumour was literally blocking the colon, and I was in for surgery the following week. 

Thankfully, I have had no recurrance in the colon, just a met in the liver. 

You will do well to get it out, saymyname310. 

Tru

Ugur
Posts: 62
Joined: Mar 2018

If it was operable, the doctors would not wait for surgery.

I'm a stage 4 fighter myself. I got my first surgery before chemo finished, because we had to stop some bleeding from main tumor. So if there won't be any complications, I don't think surgery would be an option. Because colon surgeries are major surgeries. It is not very easy to recover. Best think to do at stage 4, first to shrink the tumors and mets. Then the surgeries may come as option.

I hope your father will be alright.

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

But, yes, ask for an explanation.   My recollection is that for liver surgery the mets have to small enough, with no portal vein involvment, so that if surgery occurs they have hope of getting it all and leaving enough good liver to regenrate.   The paradox is that sometimes chemo is used to shrink the tumors so they can then be removed, but the chemo compromises the healthy parts of the liver, reducing its functionality.  And the patient has to be strong enough to bounce back from the trauna of surgery and go without threatement during the recovery phase,  In any case, it's not as obvious as one might think, especially for Stage 4 patients.   Ask them to explain the surgery options for your father, incluiding the reasoning behind each option.

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

I'm sorry to hear about your dad.  Just make sure whatever you decide it's good to get a couple options and opinions.  If you aren't comfortable with one then seek out another doctor which it sounds like you are already doing.  Wishing your father well.

Kim

Otto605's picture
Otto605
Posts: 14
Joined: May 2018

Levi, I am brand new to this forum and website, but was diagnosed with colon cancer metastasized to my liver and lungs.  I am mid fifties and in good health.

I’ve had the ‘standard of care’ chemo treatments every other week since Christmas 2016 (cycle 36 is in progress as I write).  While it has worked for me (the main tumor in the sigmoid colon has shrunk to almost nothing, the spots in the lungs are no longer visible in the scan, and the many small tumors in the liver continue to shrink), as everyone says, everyone is different.  I tolerate the treatment well and have been able to continue with this treatment continuously for almost a year and a half.

My advice is to get that second opinion and Dana Farber is an excellent choice.  I go the Smilow Cancer Hospital at Yale University, but got a second opinion from Dana Farber.  They said they would do nothing different than I am getting now.  While we heard great things from a friend whose wife got great care at DF, we opted to stay with Smilow/Yale as it was more than an hour shorter of a drive for us.

Stay positive and find what works for your Dad.

Good luck.

Otto

kim_dude
Posts: 7
Joined: Dec 2017

I'm 20 months post-diagnosis with inoperable, incurrable Stage 4 with mets in my liver, lymphnodes and pretty much all of the peritenium (sp) and oing okay overall.  I have done FOLFOX, capecitabine for maintenance and now FOLFIRI.  There are LOT's of treatment options out there and there's nothing that says you can't do traditional chemo along with CDB (or RSO if you're so inclined and have access) therapy.  

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I'm so inspired by your post. Thanks for sharing. Love to hear from other stage 4s who are doing well. Amen. And I love RSO oil, great sleep aid. 

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