Need advice on Colon Cancer Stage 4

2

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #22
    Volrecruiter said:

    Thanks..

    for the Tunadog.  Ed

    Our chemo facility doesn't

    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
    PamRav Member Posts: 348 Member
    #23
    Ice

    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 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #24
    SophDan2 said:

    Oxaliplatin is the one to keep your eye on

    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.

    SophDan

    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

  • Volrecruiter
    Volrecruiter Member Posts: 22
    #25
    Had PET scan Fri. wasn’t bad...

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

  • peterz54
    peterz54 Member Posts: 341
    edited February 2018 #26
    Keep insulin low - control what you eat - zero simple carbs

    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

  • abita
    abita Member Posts: 1,152 Member
    #27
    JanJan63 said:

    A tip for the port. When they

    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

    MMy doctor prescribed

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

  • Volrecruiter
    Volrecruiter Member Posts: 22
    #28
    Dietary advice during chemo...

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

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #29
    All over the place

    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
    plsletitrain Member Posts: 252 Member
    edited February 2018 #30
    During chemo

    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.  

  • peterz54
    peterz54 Member Posts: 341
    edited February 2018 #31
    Volrecruiter said:

    Dietary advice during chemo...

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

    A lot more needs to be done

    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

     

     

     

     

     

  • Volrecruiter
    Volrecruiter Member Posts: 22
    #32
    Update...

    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

  • abita
    abita Member Posts: 1,152 Member
    #33
    Volrecruiter said:

    Update...

    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

    Congrats that it is treatable

    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
    Volrecruiter Member Posts: 22
    #34
    ?

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

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited February 2018 #35

    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
    Volrecruiter Member Posts: 22
    edited February 2018 #36
    Thanks Tru

    nm

  • peterz54
    peterz54 Member Posts: 341
    #37
    Volrecruiter said:

    ?

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

    YES,

    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.

     

     

  • Volrecruiter
    Volrecruiter Member Posts: 22
    #38
    Update 2....pick-up meds today:

    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
    Volrecruiter Member Posts: 22
    #39
    Has anybody tried...

    fasting therapy (24, 48 or 72 hrs)?

  • peterz54
    peterz54 Member Posts: 341
    #40
    Volrecruiter said:

    Has anybody tried...

    fasting therapy (24, 48 or 72 hrs)?

    additional information

    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

     

     

     

  • Robjoe
    Robjoe Member Posts: 6
    #41
    Phil64 said:

    I was diagnosed as Stage IV

    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! 

    These words have gave me the

    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 

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