Chow down. Weight loss correlated to lower survival rates.

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

airborne72 said:

weight Loss Rate

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

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 said:

5 feet 8 inches.  If I

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

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).

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

airborne72 said:

Cokes and M&M's.  I had

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

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.

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 said:

Appetite

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.

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.

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

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