So what I get from reading is that once weight loss gets to a certain point and is catabolic, it's not about calories in anymore but takes on a life of its own. And this cachexic state might be because of a tumor, but not necessarily.
Chris has lost almost 15% of his pre-treatment body weight, and he did not have any extra weight to lose. He's lost a lot of muscle at this point. He's been on 100% tube feeding since pretty early on. He finished tx a few weeks ago.
I'm wondering when he might be expected to stop losing/start gaining, or is that all over the place depending on the person?
Nell
I always stress how important intake is to everyone. Every single day Chris should be taking in a minimum of 2500 calories and 48-64 oz of water. If he has lost 15% of his body weight, thats alot is a short amount of time. I suggest upping his minimum calories to 3500 daily. His body has been thru so much and it takes tons of energy to rebuild itself. He is only 2 weeks post rads so the radiation is still working and burning up every calories (plus more) that he takes in. Intake must be the number 1 focus starting right now until at the very least he hits the one years post rads mark.
Check with the doc about adding some high protein whey powder to his diet. It will help him rebuild himself. Dont expect to see any weight gain for a long time, maybe not for another 2 years.
Here is a recipe for something I used to make and drink when I went thru treatments. The list of foods might help you also, they mostly have a smoother texture and arent spicy which should be easier to tolerate.
Easy to Eat Food List (All measurements are estimates)
Giant High Calorie Choc-Peanut Butter Milkshake3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.
Best wishes!!!
Nell, you are intertwining a couple separate issues. First, clinical cachexia is defined as a 10% loss of body weight. It is more of a descriptive term.
Metabolic cachexia is of greater concern. Many tests can be run to determine activity level and potential harms. Your doctor should be able to help with this.
Is the difference what kind of weight is being lost? He says he's doing the number of cans recommended by the doc and dietician, so I don't think calorie intake is the issue (although I'm sure he could be doing more).
Christine, thanks for the recipe. At this point he's not taking anything by mouth because he says it's too painful. I know he should be fighting through that, at least a little, but...I'm not in charge.
It's scary seeing someone lose that much muscle, and extra-scary not to be able to find any articles that talk about the condition with much optimism. Many drugs tried, but nothing seems to work that well, at least from what I'm reading.
I know how much a patients throat and mouth hurt when going thru radiation. I also know all too well if he doesnt force himself to use those swallowing muscles he will have a much harder time relearning how to eat again. I went down that same path and in the end I suffered more than I had to by being too lazy to push myself. This is why I always tell other members about how important it is to hit those daily minimums. It is up to him to push himself. A caregiver can only do so much if their patient isnt willing to work with them and do what is necessary even if it is uncomfortable.
If weight is being lost it is due to not taking in enough calories. Count how many cans and how many calories each can has to find out exactly what is being taken in. Some patients have a fast metabolism and burn calories quicker than others. I suggest if he is only doing the daily minimum then he needs to increase it.
Having a good long talk with his doc should help you with all your questions about losing fat vs muscle and cachexia. Finding pain meds that will work will help too. Again, thats up to the doc to prescribe what will work best.
Believe it or not, very soon he is going to begin to feel slightly better. Right now is the absolute worst time in the whole radiation/recovery process. Talk with the doc and give it another week or two and then look back on everything and you should see some progress.
Best wishes!!!
PS... Dont forget to take some time just for you too. Caregiving is a tough job and you really have your hands full.
[quote=nellg]Is the difference what kind of weight is being lost? [/quote]
Yes, it actually does. Keep in mind what Christine has been saying about feeding the calories. A calorie is a unit of measure for energy. Calories in less than calories expending means weight loss. During treatment, the body is healing amidst the destruction. As long as there is an energy source, all is well. Once fat stores are depleted, muscle are the next likely candidate for fuel.
Metabolic cachexia reaches a point it is difficult, if even possible, to stop it. This is why you have to feed sufficient calories to not allow muscle cannibalism.
There are many types of cachexia or rather causes, aka wasting, like diabetes, heart, COPD, AIDS, including cancer cachexia, which is a complex syndrome, with many scenarios, and usually a poor indication of prognosis. There is really no set uniform definition. The 10% unintentional weight loss, as Uptown said, anorexia, weakness are some the signs and symptoms. The type of weight loss is usually adipose tissue, and skeletal muscle.
I lost about 50% of my pretreatment weight in a matter of several weeks wether it was from the septic shock, marasmus, cancer or combination, it took several years to gain half of the weight back, 50lbs, with various type treatments, and I'm still prone to lose weight, and did with another recurrences, about 20%.
This should be discussed with his doctors for a proper diagnosis, cause, possible treatment, if not already done.
Good luck.
Nell, almost all of us lost weight in the immediate post treatment. I lost 61 lbs. It doesn't mean that he has cachexia. If he is on a peg, talk to the nutritionist about upping his calories. I have seen cachexia up close and personal. My dad just lost all interest in food and wasted away in a week. He had non Hodgkins lymphoma.
As Paul said, there are many flavors of cachexia. The main cachexic syndromes we all face are cancer cachexia during treatment and neuroendocrine cachexia post treatment as a late effect. The first is responsible for 20%-40% of the deaths from cancer, it is believed.
More importantly, neuroendocrine cachexic syndrome cause similar muscle wasting, weakness, loss of appetite, etc., but increases of calories does not stop the cachexia. It is related to nerve endings damaged in the area around the medulla oblongata. These nerve endings, along with the hypothalamus and pituitary control the management of many hormones. Virtually any hormone loop can be affected. This can be stopped. I have seen it...firsthand.
[quote=nellg]So what I get from reading is that once weight loss gets to a certain point and is catabolic, it's not about calories in anymore but takes on a life of its own. And this cachexic state might be because of a tumor, but not necessarily.
Chris has lost almost 15% of his pre-treatment body weight, and he did not have any extra weight to lose. He's lost a lot of muscle at this point. He's been on 100% tube feeding since pretty early on. He finished tx a few weeks ago.
I'm wondering when he might be expected to stop losing/start gaining, or is that all over the place depending on the person?
Nell [/quote]
I am curious if Chris is being treated at a major cancer center. There are a couple drugs that are used specifically to try and break the catabolic state of cachexia. The first defense is Megace ES (megestrol acetate). If the weight loss reaches 20% and intake isn't the problem, this is what is being used.