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Chow down. Weight loss correlated to lower survival rates.

SandiaBuddy's picture
SandiaBuddy
Posts: 1100
Joined: Apr 2017

Once again, from the "for what it's worth" department, a new study indicates weight loss (even for the overweight) is correlated with lower survival rates. https://www.ncbi.nlm.nih.gov/pubmed/28841225

 

At the 5-year postdiagnostic survey, 2049 participants reported higher (53%; median plus 5 kg), unchanged (12%), or lower (35%; median -4 kg) weight. . . Long-term weight loss (per 5 kg) was found to be associated with poorer overall survival (hazard ratio, 1.13; 95% confidence interval, 1.07-1.21) and CRC-specific survival (hazard ratio, 1.25; 95% confidence interval, 1.13-1.39). Significantly lower survival was similarly observed for relative weight loss (>5% vs ≤5% change), BMI reduction (per 1 unit), or BMI category change (overweight to normal vs remaining overweight).

NHMike
Posts: 214
Joined: Jul 2017

CONCLUSIONS:

Weight loss 5 years after a diagnosis of CRC was found to be significantly associated with decreased long-term survival, suggesting the importance of avoiding weight loss in survivors of CRC. Future research should attempt to further evaluate this association, accounting for whether this weight change was intentional or represents a marker of declining health. Cancer 2017. © 2017 American Cancer Society.

I will work on maintaining my weight even though I'd rather it be lower. Another factor is body composition.

One thing that was remarkable about that study is that the five-year survival rate of those that survived for two years after diagnosis was 83%. But only 4.4% of those died of CRC. So it looks like NED can stick around for at least three years if you invite him over for two. And, yes, he's welcome at my place any time.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Interestingly, my rate of weight loss has increased since I completed neoadjuvant chemo/radiation.  My ability to consume more food has improved; regardless, my rate of weight loss has increased.  Perhaps the efficiency of my intestines has declined and that is a partial explanation.

 

Who knows?  I am hovering at 137.  Before treatment I was a steady 144.

 

I am convinced that I will drop more during my resection.  I don't have a good history of responding to surgeries and since this one will involve my intestines I anticipate losing even more weight.

Jim

NHMike
Posts: 214
Joined: Jul 2017

Right now my butt is a mess and I can understand eating less so that you don't have as much to go out the other side (8 more radiation treatments to go). I would guess that my weight is around 183 right now. It was at 177 at the lowest a few weeks after diagnosis. Most people think that I weigh about 160-170 so either the tumor is heavy or I have heavy bones or muscles. So there's lots of stuff that my body could metabolize if I don't eat. It sure wouldn't be pleasant though. I get tired and sometimes have headaches when I don't eat enough.

You're very light unless you're also very, very short.

I've switched to the BRAT diet this weekend (Bananas, Rice, Applesauce, Toast) to minimize residue and bulk. It may make things harder to pass and so I've resumed MiraLax daily to help push it out.

A high-carb diet is usually the recommendation for gaining weight and I would have no problems gaining weight if I had to or wanted to. But everyone is different. My approach to losing weight is to use a low-carb diet with exercise. I try to keep carbs to 1/3rd of calories and increase protein. High-carb processed foods are easy to find - Cheeze-Its, Goldfish crackers, Corn Chips, white bread, pizza - basically stuff that I avoid like mad. My wife bought apples yesterday and is making applesauce for me. I also bought a loaf of Matthews White Bread and I asked her to make white rice more often. White rice is something that I can also eat a ton of. It does sound like you should work on gaining weight during the break.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

5 feet 8 inches.  If I entered the ring I would be a bantam weight, or less.  Accordingly, when I lose any weight my face immediately takes on a guant look.  People then begin to open doors for me.  I guess my physical appearance is broadcasting and I don't realize it.

Jim

NHMike
Posts: 214
Joined: Jul 2017

I have a tennis partner and he's 5' 7" and 155 pounds. Very fit and strong though he has a little extra weight.

You do sound underweight - have you looked at talking to a nutritionist associated with your cancer care? I know that they have them at Dana Farber and at my local hospital. I did talk to one for dealing with the radiation.

I had about 850 calories yesterday (my target is 2,000). I just did not want to eat and it annoyed my wife as she made me a huge lunch of rice, tofu and vegetables. It's frustrating for her because she has no idea what to make for me. What I want/need changes so often. This morning I had a can of Canada Dry Ginger Ale. I cannot recall the last time I had a soda. But it's 140 calories and no residue to poop out.

How long after radiation ends before your butt gets back to normal? I have another 7 days of treatment and knowing that would make things a bit easier. And at this stage of radiation, it doesn't even feel like the chemo is affecting me (that is the minor problems of chemo are far smaller than the major pains of radiation).

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darcher
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Joined: Jun 2017

There are probably numerous factors playing into it with efficiency being a significant variable.  I wonder if there is a way to measure that.  How many MPG do we get out of a cheesebuger. The chemo/radiation both contribute to weight loss and so does surgery.  Afte that is when the weight gain or loss should be comparitivly examined but trying to make all other variables equal to isolate it down to just weight variance is a tough call.  I wonder if they make it a point to isolate the other factors into similar groups to ensure statistical accuracy.  

Bellen
Posts: 281
Joined: Aug 2016

I had a colonoscopy and my port put in the same week prior to starting treatment (had terrible, nervewracking delays in getting biopsy, treatment started in the city I live in - still upsets me almost a yr later).  Only good thing I now have a great Onco, but 5 hr total drive just to get to clinic and back home - doesn't include long chemo treatment.  Also have a great dietician there.  Anyway, lost 5 lbs, which I didn't need - I have always been quite thin.  Very hard to put it back on once chemo started.  The day of chemo my stomach feels pretty awful, and I have no appetite, then suffer C and D for at least a week.  Because I have a small bowel stricture, I have diet restrictions to try to prevent blockages - follow a low residue diet - which includes foods that are not necessarily good for you, but easily digested - little fiber, no nuts, seeds, grains, fresh veggies, salad - foods I really miss.  I take an Ensure Vanilla (with extra calorie) with me, if I am out at lunchtime.  I also drink Ensure Enlive - it has a supplement component that helps to maintain muscle.  I think longtime chemo atrophies muscles - notice that.  It is not easy to maintain weight when your stomach feels crappy, nausea, or one has a lot of diet restrictions, but I am trying to do my best.  Unfortunately, end up eating "junk" sometimes because I know it has those extra calories I need.  I think maintainng our precancer weight helps us to, at least look like our "old self" - as long as weight was not a health issue for someone.

airborne72's picture
airborne72
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Cokes and M&M's.  I had purged these from my diet over twenty years ago, but for some reason they were the only thing that the chemo did not make repulsive.  So they have returned to my diet.  It's temporary.  The goal was to get some calories in my body.

To answer your question Mike about radiation and its lingering effects.  Ironically, I was anal about rubbing on the skin ointment everyday to counter the effects of radiation.  BUT, I was not putting it in the correct spot.  During my final week of treatment I noticed a patch of very rough, red, irritated skin on the top of my anus.  It resembled alligator hide.  That was where I was supposed to be placing the ointment.  Duh.

Externally, it has taken about two weeks for the skin to desensitize.  Internally, I still feel "different" and unpredictable.  Having a BM is very painful, as it feels like I am ripping myself apart.  To counter that I have returned to the daily use of Miralax.

My energy level is what I find most puzzling.  I will almost feel normal one day (for the entire day) and then all of a sudden I must lay down or I will nearly collapse.  Other days are totally without any energy at all.  My situation may be compounded by a pre existing, chronic pain ailment that I have endured for several years.  I did not enter this fight at 100% but I am still in the fight.

Jim

NHMike
Posts: 214
Joined: Jul 2017

Thanks for the reply. Two weeks as a benchmark would be a nice target for healing. I haven't used the Aquaphor yet but I might give it a try.

I felt exhausted yesterday. I took a few naps and went to bed at 8 PM, woke up to take Xeloda and then slept until 6 AM. I felt really good this morning through it. So the tiredness may be something random or related to time on the toilet or unable to sleep. I just did a stretching workout for 15 minutes and it felt great. Lots of cracking joints there. It's really important to try to just maintain flexibility at our ages. I feel great when I stretch everyday but lately have only done it once a week.

airborne72's picture
airborne72
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The only thing I stretch now is my patience!

I recently read an article that indicated that the optimum time between the final radiation session and resection surgery is 8 weeks.  For me that will be 9 October.  I am now beginning to angst about that.  Hospital stays are so inconvenient.

My handoff from oncologist to surgeon will occur on 11 September.  That is when the next chapter in this book will begin.  When SandiaBuddy wrote that he lost several pounds during his surgery it got my attention.  I can ill-afford to lose much more.  Funny, some people struggle to lose weight while others struggle to maintain weight.  Makes life interesting.

Jim

SandiaBuddy's picture
SandiaBuddy
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I left the hospital after surgery weighing 136 pounds and looking like a cancer patient.  Nothing I did put on weight, so I ate almost anything.  But now I wish I hadn't.  After doing some research, I have found that diet has a significant impact on my chances of recurrence.  I have cleaned up my diet and nonetheless have put on about 15 pounds, putting me slightly above my pre-surgery weight. In the profile photo, I am probably about 148lbs.  But considering the study, I do not think that is necessarily bad.  It really is difficult to keep all of these factors in mind and to do the best we can to live well.  Sigh.  

joeys416's picture
joeys416
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Joined: Jan 2017

My most recent p scan showed my CRC almost in remission. However, I have lost my appetite, about 2 months now and have lost over 20 lbs. I'm living off chocolate milk, fruit drinks, and protein drinks. Most foods don't taste good and are difficult to consume. Can I expect to get my appetite back anytime soon and is there anything to help me get it back?

SandiaBuddy's picture
SandiaBuddy
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Joeys416:  Are you still on chemo, or off?  Some supplements are supposed to help.  Perhaps something like St. John's Wort (but not to be taken while on chemo).  I have also found that melatonin 20mg at night has helped me in many ways.  I understand how tough it is when you have no desire to eat.  Sometimes just eating anyway is bearable and prefferable to losing so much weight.  Sorry, I really do not have many good strategies to offer.  Perhaps other members do.

joeys416's picture
joeys416
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My ONC has given me a small break from chemo in hopes my appetite will return but it hasn't so far. I have 2 weeks before I see him again and if my appetite hasn't returned I doubt he will resume the chemo then. I feel good other than some fatigue though.

 

 

SandiaBuddy's picture
SandiaBuddy
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Exercise seems to help for me.  I know it took me three weeks to recover from the oxiliplatin, but now off capecitabine only for seven days, my appetite seems to be moving more toward normal.

NHMike
Posts: 214
Joined: Jul 2017

I'm kind of amazed at how hard it is to eat and put on weight as I've never had that problem after about 27. When I was in my late teens and early twenties, I could eat a couple of XL pizzas and wouldn't gain any weight - this after working out for six or seven hours a day on the weekends. When I got older and couldn't work out as much, I put on weight. Would working out stimulate demand for more calories?

SandiaBuddy's picture
SandiaBuddy
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Mike: You might be on to something.  I started putting weight back on when I returned to the gym.  Perhaps it has some effect.  I also force myself to eat the evening meal--my worst time for being disgusted by food.  But now I am seven days past chemo, and my appetite seems to be returning.

airborne72's picture
airborne72
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Joined: Sep 2012

Each of us are different, thank goodness.  The exercise may be increasing muscle tissue, which weighs more than other tissue.  It will also improve your "cut" and increase your attractiveness to members of the opposite sex.  Now there's a motivation for you!

Joey: eat whatever you want and whenever you want.  I am not a breakfast person.  I tried to force down food in the morning and it caused me to have indigestion through the day.  Consequently, I did not eat well at the times that I regularly ate before.  I would just remain with your normal eating routine but substitute undesirable food with desirable food (regardless of what it is).  Notice that I did not say anything about healthy food.  You need calories and protein and liquid.  Your diet during chemo/radiation is a temporary diet.  You can and should go back to eating healthy once your appetite returns.  In the meantime enjoy your opportunity to eat whatever you want.

All of this advice is based upon my recent experience.  I am 66.  I entered this journey at a lighter weight (BMI) so my weight loss "rate" will be different from someone whose BMI is higher.  Plus, I am not a medical practitioner.  My comments are solely based upon my experience.

If I had this to do over again, I would not get rectal cancer.  And, I would eat more M&M's, chocolate ice cream and Moon Pies.

Jim

NHMike
Posts: 214
Joined: Jul 2017

I was getting weak and tired from 1K calories per day so I ate more today, 2069 calories. And I feel a lot better though I may pay for it on the toilet seat tomorrow. I want to minimize pain but I need to be functional for work too.

JanJan63's picture
JanJan63
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Thanks for sharing that. It's interesting. I lost 8 pounds at my last onc appointment and they were very specific that I shouldn't be doing that. I know that my dosage is based on my body weight so that's an issue but I'm having trouble with not wanting to eat and forcing myself to so if I lose weight, I lose it. I could lose about 25 pounds so I like every bit that I lose. But it's nice to know that health wise it's not a big deal.

Jan 

airborne72's picture
airborne72
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Perhaps the only positive from "relating to" colorectal cancer is weight loss?  Looking for a rainbow here.  In this litany of pain, fear, confusion, irritation, depression, nausea, etc., it sure would be nice to find some positive in this mess.  Maybe weight loss is it?

A majority of adults struggle with weight issues.  Here we are blessed with an opportunity to lose weight while being told to eat whatever whenever and in any amount.  This could be the answer to someone's prayer.

Regardless, I would trade my rectal cancer for normalcy (life without cancer) and deal with BMI issues any day of the week.  Funny how our perspectives change as our lives change.

Jim

NHMike
Posts: 214
Joined: Jul 2017

Hello Jim,

Your writing was definitely more positive at the beginning of your journey and I've been through enough parts of it to understand a little negativity creeping in. In fact I'm literally sitting on that understanding.

I've seen several people lose a lot of weight through sheer willpower. Some diet, some exercise, some do both. It seems to me that it's the makeup of the individual though. I've seen far more take off a lot of weight only to put it back on. I'm blaming various bodily mechanisms for that. I see how hard people try to lose weight. There are systems that we can put into place to make success more likely but you have to line up quite a few of them to be successful.

I'd make the same trade that you would but I know how to lose a lot of weight - and it's way easier than Xeloda and Radiation.

I have a bunch of relatives coming over this weekend so I need to work on cleaning the house tomorrow. We're likely going to talk about a lot of weighty stuff. I hope it goes well.

I hope that things get better for you too, physically and mentally. You are a solid member of the community.

 

 

airborne72's picture
airborne72
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Joined: Sep 2012

Thanks Mike.  Your comment about the change in the theme of my writing is interesting.  I had not noticed.  Guess the effects of treatment blind us to some things.

Your comment about relatives and weighty stuff struck a nerve.  I have one sister and three brothers.  One of my brothers has been almost incommunicado while the other has been totally silent.  In fact, he never responded to my email to all siblings explaining my situation and encouraging them to follow through with routine and preventative medical evaluations.  I am trying to take the high road, but I just can't understand the absence of a response unless he is so overwhelmed by it all that he can't formulate a response.  Weird.

Over the past decade I have been the power of attorney for my father-in-law and mother-in-law and the executor of their estates when they passed.  That was a very difficult task, but I learned from it.  What I was doing prior to my diagnosis was arranging my affairs to make it so easy for my survivors to settle my estate.  Upon diagnosis, that task rose in importance.  For example, I have compiled lists of numbers for bank accounts and insurance policies; account numbers, locations and amounts of investments; explicit instructions about financial management for my wife upon my death; and so on.  You should try it - it is a very burdensome task.  The first question that I had to answer was whether to write in the first person or third person.  Afterall, I could be dead when someone reads it for the first time.  Grammar, punctuation, tense, syntax, bla bla bla.

My point is that we are statistically closer to death than our spouses or immediately family members.  Therefore, it stands to reason that we should get our personal affairs in order.  One aspect of that is to compose detailed, understandable written instructions.  Try it; I think you'll find it both a challenge and a release.

Jim

SandiaBuddy's picture
SandiaBuddy
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It almost goes without saying that all of us should have our estates planned, including things people often forget about like powers of attorney, pay on death provisions on accounts, funeral directions and what's to be done with our bodies or ashes. Often people are superstitious of these things, but it is helpful to your loved ones to make these plans.  Before I went in for my surgery I reviewed everything all over again and was sure that things would progress as smoothly as possible in the event of a bad outcome.

NHMike
Posts: 214
Joined: Jul 2017

I've been planning it out in my mind for a few weeks. Basically a lot of writing. I also want to write a package for co-workers over the years and tributes to those that have been in my life. But the financial stuff is the most important.

On food. I went to the bathroom for the first time since Monday. That was intentional as I didn't eat much Monday and Tuesday and then ate normally Wednesday and Thursday as I was getting weak and tired. It was painful today, twice, though the MiraLax helps quite a bit. Was it worth it in not eating much and having almost four days without pain? Probably. But it's not something that I could sustain for a couple of weeks. Four days to go and then I guess about 10-14 days of continued discomfort. I want to go running and hit tennis balls between then and surgery.

How are you doing these days? Do you still have side effects or are they shrinking?

SandiaBuddy's picture
SandiaBuddy
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Joined: Apr 2017

Thanks for asking.  I am 8 days out from the capecitabine.  I am feeling slowly better.  I have a lingering sinus infection from the drug.  I had hoped to be able to beat it without antibiotics, but it got worse, so I am on Augmentin.  My joints are improving, as well as my mood and appetite.  Hopefully I will be as close to normal as possible soon.

airborne72's picture
airborne72
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Mike:

Each day I notice a decrease in the pain associated with BM's, and that of course is good.  What I did notice this past week was hair loss in my public area.  I wondered about that and now it has happened. *Note to self - do not wonder about things as they may come to pass.

My urine continues to be rather yellow, which indicates slight dehydration but also tissue replacement internally.  I do not feel dehydrated so I am going with the internal rebuild theory.

My unpredictable episodes of fatigue continue.  I have finally stopped fighting them and now simply enjoy a power nap or a 3 hour nap.

On September 11 (Patriot's Day - let us never forget) I have my handoff consult with my oncologist.  Then I will return to my surgeon to begin the discussion and planning for a resection.

To quote Sonny and Cher..."and the beat goes on..."

Jim

 

NHMike
Posts: 214
Joined: Jul 2017

Sounds good. I haven't noticed any hair loss down there but haven't checked but there's radiation down there so it could be. Hair up top is fine.

I have had more fatigue than usual but I think the causes are: 1) Xeloda, 2) Not enough sleep due to anxiety, 3) Not enough food.

BTW, If I could have my favorite Cher song come true, it would be: "If I could turn back time."

Trubrit's picture
Trubrit
Posts: 5218
Joined: Jan 2013

Had a giggle at the typo. 

Hair today, gone tomorrow; that was me. Bald all over from chemo and radiation. 

It all grows back, though not quite the same. 

Thanks Jim, for the giggle. Now go cover up. 

Tru

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Thanks Tru.  I noticed that right after I posted it and it irked me dearly.  Then I thought I would just leave it and perhaps make people wonder if I am a nudist and live in Hawaii.

There are several words where just one letter totally changes the meaning; for eample, hello and hell, or dame and damn, or politician and liar.

Humor is the best medicine.  And when we can laugh at ourselves it is most therapeutic.  Thanks Tru for helping me laugh at myself and feel better early on this Saturday morning.

Jim

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Just realised I hadn't commented, and this being such a fine excuse. Well it would be, if I didn't leave the hospital[3 yrs ago this fine Labor weekend] at 205. So now at 230, I'm on the hook for 25 lbs. unless you can find me an article about packing it on post-surgery. Keep digging SandiaBuddy........................................Dave

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