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Need advice on Colon Cancer Stage 4

Volrecruiter
Posts: 22
Joined: Jan 2018

I had a tumor removed on my right side at the end of colon.  19 of 31 lymph nodes positive for metastatic carcinoma.  Margins are negative for involvement.  AJCC stage pT4a N2b.  I had a CT scan and the results were very small spots on the lungs...the doctor wasn‘t sure if cancerious but but his professional opinion was positive.  I went from stage 3c to 4, because 9 spots on outside lining of the lungs. I was told chemo every two weeks (all day).  I will be getting a second opinion Fri. 2 Feb 2018, Siteman Cancer Center, St. Louis, MO.  Seeking people who have the same problem....what’s expected or any information is welcome.  Thanks

Annabelle41415's picture
Annabelle41415
Posts: 6241
Joined: Feb 2009

I'm sorry for your diagnosis and also that I'm not able to help you.  It is a good thing that you are getting a second opinion.  There are others on this board that have had Stage 4 and are still posting on this board years later.  Wishing you well and if you need questions answered this is definitely the board to be on.  We are all on here to help and support you.

Kim

Volrecruiter
Posts: 22
Joined: Jan 2018

for replying.  Ed

Woodytele
Posts: 163
Joined: Apr 2017

Stage 4, Mets to liver, back, lungs.  This cancer thing is tough to predict, everyone responds differently, so it’s tough to predict what will happen. I was on chemo every two weeks initially, did FOLFoxFiri , ”kitchen sink”.  they usually only do this if they think you can handle it.  They may do another chemo cocktail, Folfox, folfiri, depends on what is going on. Your dr. Will explain it all.  It’s definitely not easy, but we all do it, and you can too!

Volrecruiter
Posts: 22
Joined: Jan 2018

you Woodytele.  When and how long have had cancer? Ed

Woodytele
Posts: 163
Joined: Apr 2017

been a tough ride. 

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I was diagnosed as Stage IV colon cancer in April 2012. Just six months earlier diagnosed with Stage I testicular cancer. Surgery and radiation for testicular cancer followed by 53 rounds of chemo and six surgeries for colon cancer. I managed to work through this all and am here today, with no evidence of disease (NED). There were a couple bleak times where I was “not a candidate“ for surgery. I too had the FolFoxFiri and Avastin (kitchen sink). However, Erbitux proved most effective in my case.

The best advice I can pass along was given to me by someone else on this forum...

Fighting Cancer is like running a marathon. Pace is important. It’s not a sprint and your done. So manage your expectations appropriately. Also very importan. Determination, commitment, pushing through the pain... Never give up.

i will add my own advice as well. Find an oncologist and cancer team that you TRUST. For me it boiled down to some common sense and a lot of gut feel. I ended up choosing University of Michigan Health Care. Common sense was that they processed a LOT of colorectal cancer patients. Gut feel was that my doctor knew what he was talking about. 

Also plan to learn. Bring a notebook. Use this forum. Others have gone through what you will be going through. KNOW that even Stage IV colorectal cancer is beatable. 

And for me my Faith and community of fellow Christians were very helpful in both practical and spiritual ways.

Another thing that helped me a ton was to openly blog my way through this ordeal. I had a lot of family and friends wanting updates so I decided to share openly. You can read my entire story at:

http://pscamihorn.me 

Wishing you the very best! 

kyolcu
Posts: 112
Joined: Jun 2017

I wanted to share my story wıth you as well, ıt looks lıke yours but your progress ıs better. Colon cancer stage 4 wıth mets to lıver and lungs. Inıtal CEA was 17000. I had Avastın, Irınotecan and 5FU for about one and half year(ınıtal dıagnosıs on 2-26-16), 2 months ago I started Irınotecan and Elbıtux and had CEA dropped from 175 to 34 so ıt looks lıke Elbıtux ıs workıng excellent. Inıtıallt I was told that I am not elıgıble for surgery. I hope one day I wıll be elıgıble for surgery lıke you and eventually NED.

Kevin1224
Posts: 34
Joined: Jun 2018

My wife was diagnosed a year ago with almost the same thing.  She has colon cancer that spread to the liver and adrenal gland.  She was told it was incurable, and not a candidate for surgery.  When she started her CEA was 1600, and her CA-19 was 3400. She was on a regiment of 5fu, Avastin, and Oxyplatin.  She had to good scans, all tumors reduced close to 50 percent.  The onc took her off Oxyplatin because she said it can cause long term nyropothy.  She had another scan it shrunk again but not by much.  She just had her last scan May and her liver tumor grew a little, but the adrenal and the colon stayed the same.  Her CEA was down to 450 in Feb. then jumped back up to 750 in May. The onc added Irinotecan to the 5Fu and Avastin and she get rescaned next month to see how it is going.  She also offered us a clinical trial but my wife refused because she they don’t have enough research on it. Also hoping we can get to the point she can get surgery or she is in the NED stage.

Robjoe's picture
Robjoe
Posts: 6
Joined: Feb 2018

These words have gave me the boost I need.  We are two weeks in.  My spouse was diagnosed stage4 colon mestas to multiple liver spots, and now two places in the bone.   To say terrified is an understatement, but I’m determined to stay, and keep him positive!   Thank you 

Volrecruiter
Posts: 22
Joined: Jan 2018

They will be giving me the following for chemo:  Fluorouracil (adrucil or 5-fluorourcil-5-FU, Oxaliplatin-Eloxatin and Leucovorin). Before chemo I will have a PET scan to see if the cancer has spread besides my lungs (still not sure about the lungs-most likely).  Any info about these drugs would be appreciated.  Ed

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SophDan2
Posts: 134
Joined: Jul 2017

Hi Vol,

I was diagnosed with stage 3C colon cancer last April. I had surgery to remove the cancerous portion of my colon and 25 lymph nodes (6 were cancerous). After this, I had a port placed and began the Folfox 5FU chemo plan. The Oxaliplatin was the only drug, of the three, that I found to generate some weird side affects. The first noticeable side affect is extreme sensitivity to cold. If you were to hold a glass of icewater, where ever the cold touches will create a feeling of receiving an electric shock at the exact location the cold touches you. That feeling went away as soon as my treatment stopped in November. The main side affect to be aware of and dicuss with your doctor, is that Oxaliplatin causes neuropathy. Typically it isn't very noticeable in the earlier treatment stages, however, once you start to feel the tingling fingers and toes you have to be very conscious with how long it last after your day of treatment. I had 12 treatments, every 2 weeks for 48 hours, but I decreased the Oxaliplatin for numbers 10 & 11 and eliminated it all together for number 12. I still have tingling in toes and fingers, but it is tolerable. I can only imagine how bad the neuropathy would have been had I not paid attention for treatments 10,11 & 12. That is why it is so important to share how the side affects feel with your doctor after each treament.

I hope you found this info helpful.

Good luck.

Annabelle41415's picture
Annabelle41415
Posts: 6241
Joined: Feb 2009

Your fortunate that you can tolerate the oxi as well as you did.  After a couple it bother me and my doctor wouldn't eliminate it or reduce it and now I'm suffering 9 years later and on medication daily to combat the side effects.  Thanks for sharing your story - it helps others.

Kim

plsletitrain
Posts: 253
Joined: Jul 2017

You (we) are challenged by cancer and I'm sorry that you're going through this now.   I underwent 5-Fu with Oxaliplatin for 3 cycles.  Didn't have any problem at that.  For convenience, I shifted to the oral form of 5-Fu, Xeloda.  The oxaliplatin's dose must have been higher because I was knocked down on my 1st infusion.  The succeeding ones were not walks in the park, but it was all tolerable.  Thankfully, didn't have any nausea or neuropathy.  Only had diarrhea which I didn't really attribute to the chemo but most likely because of something I ate.  

I wish you well during and after your treatments.  What I would usually (try) to say to myself is I am stronger than the cancer, so I'll beat it.  There are times when I feel like I'm losing but thankfully I'm still alive today.  Not sure what happens tomorrow, or what happens to my suspicious lung nodule but I'll keep praying for me to beat this.    You can do it! One day at a time.  Your mind is one strong weapon you can have to beat this.  So try to stay positive and tell yourself you can beat this.

Volrecruiter
Posts: 22
Joined: Jan 2018

my concern is the PET scan, hopefully the cancer hasn’t spread.  Ed

plsletitrain
Posts: 253
Joined: Jul 2017

I remember I had my first PET scan last december and I was literally trembling and shaking in fear when I was about to get the results.  I didn't have nausea while on chemo but when I was on my way to the PET center I felt like throwing up, I felt fever-ish, I felt like I can't walk.  Really.  I understand how you feel and I wish I can do something to ease the worry but all I can say is, let's face this.  This is part of what we have now, we gotta do what we gotta do.  Praying for good results on your scan.

Canadian Sandy's picture
Canadian Sandy
Posts: 519
Joined: Jul 2016

I took an Ativan it really helped with the anxiety. 

Volrecruiter
Posts: 22
Joined: Jan 2018

the unknown is what causes anxiety for me!

Volrecruiter
Posts: 22
Joined: Jan 2018

Port was installed today.  Step 2, PET scan this Fri.!  Hoping for positive results!

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

Afrer the treatment is over and they pull the needle from the port put pressure on the spot immediately. In only happend 1 time out of my 12 treatments, but the blood worked it way to the outside skin layer and created a big blood blister that was there for 2 weeks.

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

A tip for the port. When they go to use it, make sure they wait a minute after they wipe it with a cleaner before they put the line in. If they don't it burns. The needle seems to have the cleaner stick to it and puts it under the skin. I remember mine burning one time for about ten minutes. Usually it was just a few minutes until I figured out why. 

Good luck with the PET scan!

Jan

abita's picture
abita
Posts: 656
Joined: Dec 2017

MMy doctor prescribed lidocaine for me to put on one hour before so that the skin is numb when they stick it.

Volrecruiter
Posts: 22
Joined: Jan 2018

for the tip.  Anyother advice is much needed.

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

Have them spray a local anesthetic around before they stick it in.

Worked for me. Tip from a lost soul.

Volrecruiter
Posts: 22
Joined: Jan 2018

for the Tunadog.  Ed

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

Our chemo facility doesn't have that but you can buy stuff at the drug store that numbs it. I can't remember what it's called. My friend swears by it but I found it didn't help at all. Emlacream? Something like that.

Jan 

PamRav's picture
PamRav
Posts: 252
Joined: Jan 2017

put ice on the port prior to your infusion.  Our center had crushed ice, put dime in a exam glove and tie the end. I kept it on for 10 minutes or so. I found it helped as much as the lidocaine cream.

all the best 

pam 

Volrecruiter
Posts: 22
Joined: Jan 2018

awaiting results next week.  The waiting game is really getting to me!

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

Dietary advice across cancer centers is all over the place, so keep that in mind when, or if, you talk food with your team.   

An examination of the pathways which promote growth, including tumor growth in many kinds of cancer, shows that many of these pathways are stimulated by insulin.    It makes sense to keep insuiin low, and to do that requires keep simple carbs and excess starches out of the diet.  

There is also evidence (mechanistic, model orgnansims, limitted human studies) that by dramatically limiting caloric intake for 2 or 3 days before chemo or radiation, puts the body in a protective mode and weakens tumor cells.   Result being that chemo and radiaiton is more effective and side effects are reduced.   If you're normal weight,  or over,  this is something to consider and discuss with your physicians.   Make sure your Dr has looked at the research.  

Test for HbA1c and insulin repeatedly as well as normal metabolic and CBC blood panels.   You want HbA1c and Insulin to be very low.

Here's a talk by researcher Prof. Longo of USC which covers diet impact on stanrdard of care.   

https://www.youtube.com/watch?v=v4ame4E1rtE&t=12s

The fasting mimcking diet he discusses is about 750 calories of which about 50% is fat, 10% is protein, and the remainder is complex non-starchy carbs.    Chemolieve may be interest as it comes prepackaged.   http://l-nutra.com/chemolieve/

 

Talk by Oncologist Colin Champ - Diet

https://www.youtube.com/watch?v=iO7Y6rE3UBw&t=266s

 

Talk by Oncologist Danw Lemmane - Diet

https://www.youtube.com/watch?v=W_diITmOeCM&t=1816s

Volrecruiter
Posts: 22
Joined: Jan 2018

will start chemo this Fri.   Need advice food(s) that I can eat during my chemo and help/stop cancer from reappearing! Thanks

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peterz54
Posts: 345
Joined: Feb 2012

But there are some common threads among the researchers who study what causes tumore to grow or slow growth.    And I'm not talking about normal nutrition advce, but nutrition for cancer patients which is based evidence and will be different than advice that's normally dispenced.   

Dr. Colin Champ, a young oncologists, looked into diet as a result of his own patients asking questions and found, contrary to what many of his peers thought, that there was evidence, from past studies, which pointed the way.    A link to Dr. Champs talk is in my prior post. 

A consistent them is to remove all simple carbs. no sugary drinks or deserts, and no breads, pasta, etc.  vegetables OK, epecially green leafy.   Protein should be modest but adequate.   Good fat is increased.  If you're normal weight or heavier, then recommendations is to run a calorie deficiet, not extreme, but enough to get you to a normal weight. 

There is also evidence that going into each chemo or radiation session in a mild fasted (or fully fasted) state will lower side effects and make the tradional treatment more effective (see Prof. Longo's talk above).   Trying to eat in a narrower time window (within 10 hours or so), not all day and certainly not late at night.

Here's a talk by a trained nutritionist, Miriam Kalamian, who specializes in cancer.

https://www.youtube.com/watch?v=LMsaejxm6iI&t=221s

She has a new well reseached book "Keto for Cancer" which you can get by Amazon or her web site

https://www.dietarytherapies.com/ 

Partica Daly,  a nutritionis/cancer survisor also has an evidence based dietary regime spelled out in her ebook

https://patriciadaly.com/ebook/

https://www.youtube.com/watch?v=DuHeTEFhiAY   2017 Talk by P.  Daly

 

 

 

 

 

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Trubrit
Posts: 4886
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Read/watch some of the links Peterz54 posted.  It can all get a little confusing with opposing views on what to and not to eat, but any and all information is helpful in some way. 

At the end of the day, you have to do what feels good to you. 

During active chemo days I ate very little because I either had chronic mouth sores or just no appitite. But during my good days, I would eat whatever I could. I was told not to lose weight during chemo, and definitely not during radiation. I did lose weight of course. One week I lost seven pounds, but then gained most of it back during the good days. 

Depending on your situation, I would suggest keeping your fiber content up, and definitely drink lots of water, though it may have to be warm if you are on Oxaliplatin.  If you have trouble eating, then Ensure or one of those protien drinks for the elderly, work great. 

After you're done with all the treatment, try your very best to eat a healthy diet. Its all a learning curve, and you really have to work out what is best for you. 

Good luck on Friday. You will probably be surprised at how smoothly things go. 

Tru

plsletitrain
Posts: 253
Joined: Jul 2017

I did not have appetite during chemo so I really ate just whatever I feel like eating.  I was trying to avoid sugar but it was my only craving during that time so I told myself if I starve myself I might die of starvation and not of cancer.  And I knew I had to eat because with the amount of drugs in my body, I needed energy in the form of carbs.  I would make up for it on my non-chemo days and try to avoid the no-no food again.  But it is hard, and I can't say I've completely eliminated the meat.  It really is hard.  I don't think I can have a clean diet permanently.    I was lucky not to have much nausea, it was just tolerable so whenever I feel like not eating, I just force myself and eat from time to time.  Remember, your body is subjected to the drugs so you have to have something on your stomach consistently.  

Volrecruiter
Posts: 22
Joined: Jan 2018

Received some info today on my PET scan.  I have small spots on my lungs...according to my nurse the cancer hasn’t spread anywhere else in my body.  Was told it’s treatable with chemo and the Doctor would explain more this Fri. before starting chemo. I want to thank everyone who have so kind answering my questions.  Ed

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abita
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Congrats that it is treatable! I know hearing that it spread is scary, as mine spread to liver. But there is so much hope in the fact that it is treatable!

Volrecruiter
Posts: 22
Joined: Jan 2018

Should I layoff anything that has sugar, ie food, drinks, etc.?

peterz54's picture
peterz54
Posts: 345
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Especially leading into each treatment sessions.  There appears to be evidence that insulin spikes send growth signals to tumor and insulin spikes can be driven by glucose spikes.   

Treat yourself (in small doses), if you must, but only after you're out of the woods.   Diet is critical - moderation kills.

 

 

Trubrit's picture
Trubrit
Posts: 4886
Joined: Jan 2013

I would say keep a keen eye on the refined sugars you consume. Sugar is everywhere and in (almost) everything. 

Sugars in fruit is all natural.

A bit of a treat here or there can't be a bad thing. I just had some chocolate. 

The body needs a certain amount of sugar.

If you're going to 'lay off' anyting, I would suggest sodas, they are loaded with sugars and nothing nutritious about them. 

Tru

Volrecruiter
Posts: 22
Joined: Jan 2018

nm

Volrecruiter
Posts: 22
Joined: Jan 2018

1. Prochlorperazine 10mg-nausea

2.  Ondansetron-8mg-nausea (may cause constipation and may cause headache) sub for zofran

3.  Dexamethasone-4mg

4.  Lidocaine-2.5% and Prilocaine-2.5% cream

5.  Loperamide hci 2mg-anti-diarrheal

Thanks everyone for your support

 

 

Volrecruiter
Posts: 22
Joined: Jan 2018

fasting therapy (24, 48 or 72 hrs)?

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

L-Nutra has a repository of scientific papers on fasting and health effects, including cancer.   

Might be of interest as a supplement to the lecture by Prof. Valter Longo, which I posted above

Papers:   http://l-nutra.com/scientific-articles/

One type of fasting mimicking diet that was developed and offered through L-Nutra is called Chemolieve, which is specifically for cancer patients, and designed to replace water only fasting.  Water only fasting works but is more difficult in terms of compliance and is usually not something the typical physician would be comfortable with because of safety concerns:

http://l-nutra.com/chemolieve

A short segment out of this interview with Longo might be helpful  14:15 to about 25.

https://www.youtube.com/watch?v=d6PyyatqJSE

Here is a case report for water only fasting.  One person with lymphoma who underwent a medically supervised long water-only fast at TrueNorth Health Center

http://casereports.bmj.com/content/2015/bcr-2015-211582.full.pdf

It seems to me that the key point for someone undergoing therapy is to go into each chemo or radiation session in a nutrient (glucose and protein) deprived state starting several days before treatment. This gives the body time for the normal cells to go into a more protective state and for the cancer cells to become nutrient deprived (and supposedly weakened).    This nutrient deprived state can comes under several headings - water-only fasting, fasting mimicking (Longo), restricted low carb, or restricted keto.  Restricted meaning signifiantly restricted in terms of overall calories in addition to restricting simple carbs/sugars and protein.   Keto may not restrict calories as much by using fat to make up for the carb and protein deficit.  In all cases, a side effect is that the liver produces more ketones, which is a subject of research in themselves

 

 

 

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

Wow..the diet thing is really interesting. Anyone out there who has actually had success OR remission due to diet?

Thanks! Always believed that diet is the key to healing...

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

And good luck Volrexruiter! Depend on this awesome sight often

..good peeps here

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