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Colon Cancer Survivors

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Although the news report seems obvious it's encouraging that leading a healthy lifestyle after diagnosis and treatment reduces recurrence.

http://www.nbcnews.com/health/health-news/colon-cancer-survivors-live-longer-healthy-habits-n761231

Here's to tree nuts!

Cindy

Trubrit's picture
Trubrit
Posts: 5124
Joined: Jan 2013

What is obvious is not always easy to follow.  

I eat 'fairly' healthily. I still eat treats. In fact, I was talking to my husband this morning about enjoying life before I die, which means, I'm going to eat trifle and chocolate. I'm going to bake bread and cakes. I just can't cut it all out, because I won't be happy, and I so want to be happy. 

I do 100% agree with exercises, even if its just walking, while undergoing chemo.  In hindsight, I think I gave in to fatigue too easily, during my treatment, and I regret that.  I still would have had fatigue, but maybe it would not have been quite so debilitating if I had 'made' myself get off the couch and have a little walk around the block.  

I still think that many CRC patients benefit from chemo and radation, and I hope that this doesn't make people think that if they eat a 100% healthy diet, they will be cured without treatment. 

There's a balance to be had. 

Thank you so much for sharing the link. 

TRU

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Great point Tru!  Easier said than done…

I love trifle!  Make it every Christmas holiday.  Getting Birds custard was always challenging until Amazon came along.  Lady fingers still hard to find though. Agree need to enjoy treats every now and then. My sweet spot is Dove chocolates.   

I’m walking every chance I can but do get a bit light headed sometimes and with the neuropathy find myself walking sideways with balance issues but walking nonetheless. On infusion days, I walk along our canal with my infusion pump strapped across my shoulder which looks a lot like a binocular case for birding.  I do enjoy the birds, too!

Appropriate point about keeping everything in balance and following a complete treatment approach.  Leave no stone unturned on this journey…

Love your updated photo! 

Cindy

Trubrit's picture
Trubrit
Posts: 5124
Joined: Jan 2013

I don't use lady fingers (and neither did my mum), I use pound cake. Home made is the best, but Sara Lee is good.  I'm guessing you sit your ladyfingers up the sides. I just put my sponge in the bottom and pour the jello over to soak. 

Yes, Amazon. Love it! Living in rural America, I buy many, many things from Amazon. 

Living in America without English food was hard until Amazon started making it available, now my table is 80% English. HA! 

TRU

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

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/

 

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Thanks for sharing SandiaBuddy!  Want to start eating tree nuts but have an ileostomy so not advisable right now.  Think you also posted the benefits of coffee and as much as I love coffee can only do one cup a day due to potential dehydration issues.  So I wonder if almond butter would be a good substitute for actually eating the almond itself....  

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

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! 

GettingPeacefro...
Posts: 1
Joined: May 2017

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 listeningSmile

Trubrit's picture
Trubrit
Posts: 5124
Joined: Jan 2013

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
Posts: 27
Joined: May 2017

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.

beaumontdave's picture
beaumontdave
Posts: 1037
Joined: Aug 2013

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

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

GSSmith, nothing in life is certain.  If you can make it work (and you probably can), don't delay the dream!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    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.

fedester
Posts: 757
Joined: Jul 2004

Good to hear from you !!!. Seems like high blood pressure and heart failure go along with our cancer as i have both . Just passed my 13th year from my original colon dx. It has not been easy but you keep pushing on, I have been having a hard time lately. I have been doing alot of thinking(not so good). But I am here by the good grace of the Lord. Take care Ron!!!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

  good to see you are still upright. It is sad to win the battle and find out you now have a bigger fight. I have had some bad times with the heart failure, at one stage my legs and lungs filled with fluid. It was not the nephrotic syndrome with the kidneys as my protein loss was under one gram a day. I had to go on double diuretics and stick to a litre a day of fluid for a few weeks before I got it under control. Pretty scary stuff but we are stll here and alive.. Stay well mate ,cheers Ron.

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

Well, I haven't changed my diet much because I never di eat badly due to long term IBS. I do have more fruit and vegetables now than I used to but it's because I want them, not to try to help my situation. I was told with the ostomy that I'd have to cut back on them but Ive foubd ways around that and most don't bother me at all. I eat salads and corn on the cob no problem but celery gave me a blockage because of the string so now when I really have it I carefully removed them. And the membranes on orange pieces are a blockage issue so I eat them with a spoon and just eat the meaty part.

There are plenty of people who ate very well and got colon cancer anyways so I'm not sure I trust the suggestion that it helps. It obviously isn't bad for people but I don;t think it should be counted on as something that can prevent it or a recurrence. And I've mentioned on here before that our friend's horse had a huge colon cancer tumour and I can guarantee he wasn't eating meat. Plus they had him and several other horses for about fifteen years and he was the only one so it doesn't make sense that it was environmental, either.

I wish there was something that we could absolutely state is a help and follow it but nothing is for sure. When I was at the cancer retreat last fall they did talk about a tie between cancer survival and exercise but that was for all cancers. And I kind of wonder if they say these things hoping people will embrace it, not because it actually has been proven to help.

That's my two cents worth...

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

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.

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

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

SandiaBuddy's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

Ron:

Thanks for your comments.  Do you think the initial chemo helped you to avoid a recurrence of cancer, despite the awful side effects?  If you could do it over, would you skip the chemo?  And what advice do you have to give post-surgery stage 3 people who are considering or in chemo now?

Thanks in advance for your reply.

 

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   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.

danker
Posts: 1234
Joined: Apr 2012

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's picture
SandiaBuddy
Posts: 1054
Joined: Apr 2017

Thanks for your insight, Ron.

kmygil
Posts: 881
Joined: Feb 2007

I am a 10 and 11 year survivor of two cancers, both from HNPCC (Lynch Syndrome) which causes colon and a slew of other adenocarcinomas.  Survival means so much more than simply continuing to breathe.  Survival means dealing with the long-term and often permanent effects of treatment.  Survival means adapting to your new normal.  Survival (for me) means accepting new limitations, not because of the cancers, but because the treatment effects combined with pre-cancer conditions have made certain things undoable.  Survival means accepting that once you no longer have health insurance through your job, no one will touch you in any way that's affordable when you're on a limited, fixed income, so you sort of go along without health insurance never knowing if a recurrance is happening, since you can't get your checkups.  But here's the thing.  I decided to just enjoy what I have, try not to stress about what I can't control, love my dogs, and realize that I won't live forever.  Yes, I have an exit plan if I do, indeed, get sick again.  But it's just there in case.  Right now, I'm just savoring my life.  What tomorrow brings will happen tomorrow.  Today is beautiful.

cbviau
Posts: 22
Joined: May 2017

kmygil  You are so right about everything you said.  I love your uplifting and positive feedback.  I am a recent anal cancer survivor (3-1/2 years NED) and I concur with your acceptance of life as it is.  Survival for my condition and lifestyle begins in the mind and I try to stay on top of it.

But I'm not here for me.  I'm here for my sister-cousin who was very recently diagnosed by her Vascular surgeon with signet-ring cell adenocarcinoma of the rectum.  He told her this type cancer is fast spreading, incurable, and gave her from 1 to 3 years to live.  She has an appointment this Wednesday with an Oncologist and I'm so hoping something can be done to help her.  She was also recently diagnosed with an abdominal aortic aneurism.  So there is that to contend with if she is eligible for cancer surgery and HIPEC.

I feel like I am walking around holding my breath for her, waiting for whatever the inevitable will bring.  Prayer and hope is all we have, along with the love and support from this forum and close family members.  The survival stories I've been reading here, from gallant cancer survivors, have really helped me to help her.  She is not in a survivor-frame-of-reference right now and doesn't visit CSN.  She is more in disbelief and that is understandable.  I'll return after Wednesday to report what her cancer doctors have to say about her prognosis.  Thank you for allowing me to vent my concern for a family member I love.

Note:  I forgot to mention that my father died from colon cancer in 1979.  We believe the problem may have stemmed from his service in the Navy.  He was on destroyers and traveled the globe.  Somewhere along the line, he ate candy that was laced with glass and this lead to dad having part of his colon removed while he was in the service.  I don't remember all the details.

I looked up Lynch Syndrome.  My father is the only family member with colon cancer.  But me and my older sister both have endured treatment for anal cancer.  And now our cousin has rectal cancer.  Our cousin is the same paternal DNA.  We share the same grandfather but different grandmothers, yet our grandmothers were full blooded sisters.  In short, my dad's mother died young and grandpa married the younger sister.  Thus my cousin's father and my father are half-brothers.

Colon & rectal cancers fall under the heading of colorectal cancer: anal does not.  My sister and I have had regular colonoscopies for many years.  I've had four in 20 years and three anoscopies in about 3-1/2 years.  Our cousin only recently had an anoscopy but never a colonoscopy.  I'm wondering ... if she had gone through a colonoscopy, say ... five years ago ... would the ring-cell cancer have been found early?   Also, why don't doctors regularly test people with family histories of cancer?  What ever happened to prevention intervention?  The scientists need to come up with something better for early intervention of signet-ring cell.

Also for those who have been diagnosed with cancer, it's my understanding that a PET/CT scan does not always pick up the sheets of signet-ring cells.  There is another type of test that does but I don't know the name of it.  If anybody does know, would you please tell me?  I want to learn more about it.  Thank you.

I'm still under the care of my Hematologist and see him every six months.  So far all my blood work looks good.  Knowing my family history of cancer, I am curious why my doctor never mentioned Lynch Syndrome to me.  I will have a lot to talk to him about in August.

Hugs and many blessings to All from Above,

Carol

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

I love hearing about people living with and after cancer. It's devastating. It affects our lives for the rest of our time on earth. But it's what we do with that that defines us and makes life worth living. We can sit around feeling badly for ourselves and waste away while telling ourselves that we're victims and to be pitied. Or we can pull on our big girl panties or big boy shorts and get on with life as best we can. Our lives are not diminished because we have limitations, they are still the lives we have and they may be different or they might be the same as previously but they are what we have now. We either live it the best we can or we crumble. I don't think there's anyone on here who isn't a fighter and who isn't giving it their all. This forum seems to be all about living despite cancer and fighting it as best we can. I've seen some new people come on who are so frightened of the future become emboldened by what is offered. They see that it can be dealt with and lived with and that the dagnosis is not an automatic death sentence for most of us. Sadly, for some it is. But even they can go down fighting.

Strength to all of us, we are the toughest of the tough.

Jan 

cbviau
Posts: 22
Joined: May 2017

I so agree with everything you have said, Jan.  I just hope my cousin can get the help she will need to fight for her survival.  Without hope, there is no tomorrow.

Carol

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

Thank you! "I hope, or I could not live" is attributed to HG Wells and I find it to be very much the truth. To give hope is to give one of the greatest gifts of all. 

Hugs,

Jan

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