Colon Cancer Survivors

I could not find the mentioned study (apparently not published yet) but here is one with similar results:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4560032/

Here is a somewhat different description of the study mentioned earlier:

https://www.medpagetoday.com/meetingcoverage/asco/65387

And another take:

https://www.statnews.com/2017/05/17/nuts-colon-cancer/

The focus seems to be on tree nuts, so seemingly any of the tree nut butters (excluding peanut butter) would have the same benefit--and the 42% improvement came with only two servings a week! 

GettingPeacefromPieces said:

I finished my chemotherapy in December and I felt so isolated because I did not know how to reach out.  Well today is my first reach out!!!  I did see the news report about adopting a healthier lifestyle would improve survival odds and basically give a better quality of life.  I think my issue is that I will really be out of "my norm" in trying to adapt some of the better ways of eating.  I do however feel I should have done more exercise while on chemo.  Now I have lingering joint aches that affect my mood and I have a difficult time trying to get motivated because of the pain.  So this FIRST TIME POST is part of me doing something to get my mind in a better place.  Thanks for listening

I'm glad you are 'doing something'.  Take baby steps to start with. You don't need to drop all of your old eating habits at once. Start by adding a little more of something healthy; say, an extra serving of fruit or a salad a day.   You will do great! 

Look forward to hearing more from you here on the forum. 

Tru

gsmith53 said:

My first reach out as well

I am in the middle of my chemo cycles. Oxi, and 5-FU. Had two weeks of delays before todays cycle, due to platelets the first week, and whitecells the second week. Today was cycle 5 of 12, one every 2 weeks.

I was walking allot at first, but I admit that I have been slacking off. I am re-modeling the house while I'm in chemo. I can work from home, so I can be a general contractor. I'm pretty sure that when it's all done, I can get back the discipline to get out there.

I was diagnosed on Valentines Day this year. 12" of sigmoid colon removed, along with a number of lymph nodes. 7 contained cancer, but the margins were clear. So, stage 3c. CT and MRI showed a clean baseline, just before the first cycle.

My wife and I are near our retirement age, and want to see the country from an RV. We are selling the house as soon as the remodeling is complete. My job allows me to work from anywhere, so I will keep it until my wife, nine months my younger, hits 65 and can collect Medicare. That will be in April of 2019. Our plan is to complete the 12 cycles of chemo. Then hoping for the best to be able to hit the road, and return to the oncologist only when needed for maintenance screenings etc.

I am scared that I may not have the time to get our dream taken care of. I hope for the best, but am preparing for the worst.

It's what I did and do, we share a lot of common details: Contractor, sigmoid colectomy, 2 of 17 so 3b. I was 49 at diagnosis, had the cycle of Folfox, had two reoccurances in the liver, but I'm 2 1/2 years NED and still busting my hump 9 1/2 years later, so take heart, and welcome..........................Dave

    There are a lot of new survivors on board now. I was dxed back in 1998 with an aggressive tumour of the transverse and descending colon. I had surgery. My surgeon said it was so aggressive he could almost see it growing. I was staged 3 c into 6 of 13 lymph nodes.I had 48 weeks of chemo , mainly 5Fu via drip line enhanced with a drug called levamisole. It was banned in 2001 for often fatal side effects and questions on whether it had any impact on cancer at all.I am now in my 20th year cancer free. I have a lot of long term side effects. One of the wishes I hear most from survivors is to return to a normal life. I am not sure I want to. In my normal life I developed cancer. I live my life as a survivor. In my normal life I really didn't take my health that seriously. Sure I had lots of symtoms but hey I was 48 and everyone gets a few niggles when they appraoch fifty. All those little symptoms suddenly blossomed into a life threatening condition with the diagnosis of cancer. I began to learn about my illness, how and why I got it and the avenues available to stop it coming back. I remember my surgeon telling me that I was cured of that cancer but he said if I drop my guard I would be in the same situation. Vigilence and surveilance were his suggestions..Whatever follow up tests are advised , have them on time . Any changes you note in your bodily functions take note of them and act by telling your doctors and make sure they follow up , a pat on the shoulder is not enough.  Medicine has protocols , they are not infallable. I recently had a scope . it was at three years from my last one . I was not happy about it and made a lot of noise about it. They kept saying you had a couple of clear scopes , you technically should be out to five years. My reply was they had not sat in the surgeons office and been told "I could almost see it growing"! I had the scope and they removed four polyps , the biggest 11 mm. I am now permanently on two yearly scopes.

         I follow the same regime with my long term side effects. The medical profession are loathe to even admit tthat long term side effects exist. I have several auto-immune problems. Nephrotic syndrome of the kidneys , life threatening and treated twice daily with cyclosporine. When I first suffered protein-urea i asked for a referral to a nephrologist. My gp said you find one ad I will refer you. I found one and got a referral. He was awful and nearly killed me with prednisone. Found another, just as bad , he nearly killed me with blood pressure meds. Third tinme lucky my new doc is brilliant. He not only keeps my protein loss down he constanly monitors my blood pressure and controls my congestive heart failure. He keeps an eye on my liver(auto-immune hepatitis) and tries to lessen the impact of psoriatic and osteo arthritis to give me some quality of life. We actually talk and he allows me to monitor and alter things like my bp and type two diabetes meds to reflect what my blood pressure and glucometer are telling me.

        The other problem encounterred by survivors is the void at the end of treatment. It does exist , in my twenty years of survival no one from the medical profession has contacted me to find out what the long term results of taking a dangerous banned substance are or even why I am still alive. This is where we can fail as a survivor. I had to become my own advocate. I have had severe motor sensory peripheral neuropathy for 15 years I saw a neurologist who confirmed it with nerve conductivity tests. He would not treat it because he did not know what caused it. I showed him articles on the long term effects of 5Fu combined with levamisole causing severe neuropathy. He said see some one about it.WHOM do I see?  See someone about it! WHAT ARE YOU CHOPPED LIVER!  I haven't seen him since. I mentioned levamisole to my nephrologist. He asked if I had been on it and how much I had taken. He said that levamisole was a very interisting drug and not very nice. He credits my autoimmune conditions to levamisole and my tpe two diabetes to prednisone. I asked how he could be sure of those observations. He justed laughed and said by autopsy..I have a very good skin cancer doctor, heavy duty immuno suppressants cause skin cancer. I see him every six months there is always something to remove.  Most of the chemo agents cause sunsensitivity and it is another area where you need to remain vigilent.   Surviving survival is not easy , once you are in the zone you can never let your guard down. The farther you get from your original cancer , the closer you get to your next one. best wishes to all of you survivors, stay well, Hugs Ron.

Jan:  I do think the exercise component has fairly strong evidece behind it.  I am still researching matters, but here are a few studies:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3818492/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4922494/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150459/

http://ascopubs.org/doi/full/10.1200/JCO.2014.59.7799

Personally, I like to exercise, so it is no burden to do it, but the evidence seems solid enough to me to see it as an important component of my treatment.

   It is funny, when a medication is found wanting,In this case levamisole it usually disappears from the face of the earth. The dose of levamisole for chemo was based on body weight. Too little was considered useless and too much was often fatal. Up till recently I was unable to find much about the drug except it was used in vetrinary science as an ani parasitic in animals and fish. Recently it has been used as an agent to cut cocaine and caused quite a bit of damage to those taking it. Although it waas banned in the USA in 2001 I have found reference to its use in the uk to treat children with nephrotic syndrome up to the present day. Often drugs used to treat a condition can also cause the condition when doses are excessive. Lyrica is an example . It is an anti eppileptic commonly used to treat neuropathy. If the drug is stopped suddenly or an overdose occurs it can cause eppileptic siezures. I only know or two people , myself and my New Zealand friend Virginia (board name Foxy.) who took levamisole  I was 3c and she was a stage 4 . We both had surgery to remove colon and she had a wedge resection of her liver. Between us we have approx 45 years survival but we have both suffered major auto immune problems and neurological problems.

        Chemo is a little like advertising, it is very difficult to prove if it works or not. If you survive cancer it is taken as a sign that the chemo has worked. If you don't it is usually assumed the chemo was used too late . My nephrologist believed that the more aggressive the cancer , the better chemo works. Would I go thru chemo if I had my time over? Yes i believe in taking every opportunity to beat cancer .  I am glad that I did not have to deal with any of the platinum drugs but it still did not save me from severe peripheral neuropathy.  Although I am having a lot of problems now I have had a lot of useful years so I am not complaining. Now I just have to match my abilities with my asperations. I don't think that if I did develop another cancer that I would have another lot of chemo. I think that one major assault on your body from thatstuff is about all a body an take in one lifetime. I know some people have been on it for years but sadly it seems to take its toll. In regard to exercise , about three years post treatment , I started walking. I was averaging around fifty miles a week every week for around two and a half years. I suffered acute pancreatitis , lost my gallbladder and started with the onset of my auto-immune and neurological problems. The doc who took out my gallbladder suggested that i had just about killed myself by overdoing it. My only suggestion is moderation in everything, Best wishes Ron.

ron50 said:

Hi sandia buddy

   It is funny, when a medication is found wanting,In this case levamisole it usually disappears from the face of the earth. The dose of levamisole for chemo was based on body weight. Too little was considered useless and too much was often fatal. Up till recently I was unable to find much about the drug except it was used in vetrinary science as an ani parasitic in animals and fish. Recently it has been used as an agent to cut cocaine and caused quite a bit of damage to those taking it. Although it waas banned in the USA in 2001 I have found reference to its use in the uk to treat children with nephrotic syndrome up to the present day. Often drugs used to treat a condition can also cause the condition when doses are excessive. Lyrica is an example . It is an anti eppileptic commonly used to treat neuropathy. If the drug is stopped suddenly or an overdose occurs it can cause eppileptic siezures. I only know or two people , myself and my New Zealand friend Virginia (board name Foxy.) who took levamisole  I was 3c and she was a stage 4 . We both had surgery to remove colon and she had a wedge resection of her liver. Between us we have approx 45 years survival but we have both suffered major auto immune problems and neurological problems.

        Chemo is a little like advertising, it is very difficult to prove if it works or not. If you survive cancer it is taken as a sign that the chemo has worked. If you don't it is usually assumed the chemo was used too late . My nephrologist believed that the more aggressive the cancer , the better chemo works. Would I go thru chemo if I had my time over? Yes i believe in taking every opportunity to beat cancer .  I am glad that I did not have to deal with any of the platinum drugs but it still did not save me from severe peripheral neuropathy.  Although I am having a lot of problems now I have had a lot of useful years so I am not complaining. Now I just have to match my abilities with my asperations. I don't think that if I did develop another cancer that I would have another lot of chemo. I think that one major assault on your body from thatstuff is about all a body an take in one lifetime. I know some people have been on it for years but sadly it seems to take its toll. In regard to exercise , about three years post treatment , I started walking. I was averaging around fifty miles a week every week for around two and a half years. I suffered acute pancreatitis , lost my gallbladder and started with the onset of my auto-immune and neurological problems. The doc who took out my gallbladder suggested that i had just about killed myself by overdoing it. My only suggestion is moderation in everything, Best wishes Ron.

I had chemo and radiation prior to my resection.  After ileo reversal, Oncologist wanted more chemo-to make sure!  Surgeon said"no, not needed."  Thus neverhad any more chemo.  Now NED for last 7 years.   I love my surgeon!!!

SandiaBuddy said:

Exercise

Jan:  I do think the exercise component has fairly strong evidece behind it.  I am still researching matters, but here are a few studies:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3818492/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4922494/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150459/

http://ascopubs.org/doi/full/10.1200/JCO.2014.59.7799

Personally, I like to exercise, so it is no burden to do it, but the evidence seems solid enough to me to see it as an important component of my treatment.

Yes, when I was at a cancer retreat last fall exercise was brought up as being of beneift. I don't regularly exercise but I am busy physically. I have a horse so I ride often and we have dogs so I walk them. And I do things around the house and work hard at it. Last week I painted our deck. The other day I cleaned out my husband's truck. Which is a big job due to him smoking in it and drinking coffee which he slops all over. But it's going up for sale so it has to be clean. I worked on it until my back hurt so much I could hardly walk. The rims had brake dust so that was a fun job.

Anyway, you're absolutely right, there is evidence that exercise helps.

Jan