One patient with glioblastoma still alive nine years later
by KaylainTx on Tue Sep 21, 2010 08:53 PM
My dad is losing weight FAST! He was 220 in June and down to 190 at the end of August when he was diagnosed with stage IV pc. It's been 2 1/2 weeks since he started gemcitabine/tarceva. At his first chemo treatment he weighted 185. last week (thursday) he was down to 178. Today he went to get his port put in and they weighed him at 171. He's losing more than a pound a day now.
He's eating small meals, but it really hurts him to eat. He's supplementing with Boost and we are even adding benecalorie (nestle' nutrition) to the boost which makes each shake about 700 calories. What else can we try?????
He has BAD diarrhea and has since June. Nothing seems to stop it.
I know the boost probably has a lot of sugar, but how can you stay away from sugar when you so desperately need the calories? Please - we will listen to any advice!
by marchar69 on Tue Sep 21, 2010 11:27 PM
My husband kept losing weight for about 4 weeks after beginning chemo and then all of a sudden the tumor starting shrinking and he was able to eat more and the weight started creeping back on him.
I don't know how your dad'd appetite is, but if he doesn't have much of one, have the doctor give him some megace, it will help stimulate an appetite. Even in his weakest point, my husband would always eat soft scramled eggs, I'd throw in some cheese and he liked that. You might could even try some of the softer protein bars, I wouldn't give him any with nuts, but some of the softer to eat ones.
I wish I could help you more, but I am thinking of you.
by Fredsbro on Wed Sep 22, 2010 02:32 AM
The Megace helped me turn around my weight loss, I'm still taking the Megace pills twice a day.
You probably already know this, but if it hurts in his stomach when he eats, make sure he is taking pancreatic enzymes to help with digestion. One pill before he eats, one during and one after. Some people do more than that, as needed.
28 months since diagnosis
by RocCandy on Wed Sep 22, 2010 05:51 PM
Please see a nutritionist, they have all kinds of aids to help with weight/muscle retention. Also, homemade broth is easy to digest but full of needed protein. The oncologist are not very good at assisting their patients with information on weight loss/digestive aids but a nutritionist helped my husband when no other doctor (oncologist or gi) had any other ideas!
by RayLogu on Wed Sep 22, 2010 05:55 PM
I had alot of trouble eating during chemo and radiation and had blood in the stool which was diagnosed as being caused by stomach erosion (small ulcerations) and also erosion at the site of the surgery where the duedoneum was reattached. I was put on meds to coat the stomach and reduce acid and after 4 weeks began eating better. At the suggestion of the gastro doc I started taking Align Probiotics and have been on those for 10 days, finally I am eating more normal and the diarrhea is gone. One thing I was told early in the recovery process is to take Metamucil fiber capsules, although it is a stool softener, the fiber will firm up the stool and ease up the diarreah. I went through alot of depends before getting this under control and empathize with your dad. Keep asking the docs for help and possibly ask to see a nutritionist.
my very best to you and your family.
by Trinigirl on Wed Sep 22, 2010 05:57 PM
Sugar isn't the answer... and I've been reading that these tumors actually feed on it!
A nurse intructed my dad to eat oranges. The acidity help to open things up... try vinegar too. DO NOT EAT GRAPEFRUIT!!! It gets in the way of meds that our patients are on!
I know that Nestle's makes a supplement that adds around 300 extra calories to the food you eat.
As for the gas and diarrhea, my dad's doctor prescribed Immodium. Those are most likely effects from the chemo.
Most of all, keep a positive attitude!
Peace and love,
by concordia on Wed Sep 22, 2010 07:45 PM
This is one of the biggest challenges! My mom, diagnosed July 17, adenocarcinoma, inoperable mets to liver, 61 yrs old, was and still is having a terrible time eating. She lost 11 lbs in 10 days then another 9 lbs in 7. She is being treated on FOLFIRINOX which is very tough but we force her to eat. It was to the point where we said, look I know you are scared to eat because maybe you will vomit and you will lose more fluids, but the reality is you need to try to eat until you think you are going to vomit. This is so important. The only way to get the weight up is to eat. So here is what worked for us...she was taking in 86 cals a day...now 3 weeks later she is taking in 2200 cals a day!!! I'll tell you it isn't easy though...
1. We figured that 85% of her eating problem was based on her mental state. She feels like she has no control over anything, but oddly making the choice not to eat and giving and excuse was a way for her to take control of something. She didn't even know she was doing it. We got her on an antidepressant (Remeron was first because it is supposed to help stimulate appetite. It didn't work for her at all and made her depression worse. We switched to Celexa)
2. Megace. 2x day out of a little medical spoon. She had no problem taking that. So we started pouring Ensure in it so she would start looking at Ensure like Medicine. This worked pretty well. 1 spoon of Ensure every hour. Ask your onc about the Megace and ask about Marinol.
3. Ensure. It's vile....but it works. 4 Ensure a day. Ensure Clinical Plus is 350 calories (Plus added potassium to keep his electrolytes balanced). We add 1 Tablespoon of Flax oil to each bottle and shake it up. (The flax oil adds 120 calories and of course is a great way to get the Omega 3, 6 9s in). We put a little lunch cooler with an ice pack right by moms bed. And when she wakes up in the morning she has her first Ensure. It is somethign that allows her to make the choice to reach for it and to feel accomplished when she finishes it. So before she even gets out of bed she has put a 470 calorie dent in the day!
4. Bites that matter. Don't waste time with pretzels and things that don't have tons of calories per bite.
1 Water cracker with 1 oz triple cream brie cheese (130 calories); a 3 oz espresso cup with Full Fat Yogurt that he can shoot down 82.5 calories; 1 T oil added to anything even the yogurt 120 calories; Dry milk powder added to a glass of milk; Whey Protein 230 calories--if he can drink shakes put some weigh protein in, Juice-8oz pear juice 150 calories and is also good for constipation FYI if that happens from the meds. (mom fluctuates with horrible constipation and then horrible diarrhea)
5. In home hydration. We had the Dr order in home IV hydration bags for our mom. She was severely dehydrated because of the lack of eating, drinking and diarrhea. The hydration allows her to not worry about drinking fluids and filling up her belly with liquid so anything she puts up to her lips has calories. It has been a huge help.
6. Diarrhea--Ask the doctor about the following
Questron Powder to bulk up stool; Tincture of Bella Dona with Phenobarv; Creon-pancreatic enzyme helps with absorption of food.
Try to incorporate some Kefir yogurt or any yogurt to get some probiotics into the gut.
I hope some of this helps...just wanted to list out the things that have worked for us (some days). Its always a challenge...this being one of the hardest.
by dmc1944 on Thu Sep 23, 2010 03:30 AM
Many people have mentioned Megace and I agree. Unfortunately Megace doesn't taste good and Adrian hated it when they gave it to him at M D Anderson. However, it turned his appetite up the first day he was on it. Recently I heard that it helps tremendously to add honey to it, so try that and see if it makes it more palatable. Additionally, regarding the diarrhea, usually that means he isn't taking enough digestive enzymes. They must be prescription enzymes, not over the counter. He should not chew them up as they are designed to not dissolve until the get to the intestine where they digest the fats. It is the undigested fat that is usually what causes the diarrhea (you've heard of "grease going through a goose"). The undigested fat causes the food to just slide right through the intestine and the body does not have the opportunity to digest and use the nutrients. Coconut oil is digested in the liver, so that does not cause problems, so coconut macaroons also help with calorie intake and help control the diarrhea. If he is taking digestive enzymes and still has diarrhea he probably needs to be taking more enzyme. Have him take 2 with the first bites of food, 2 in the middle of the meal, and 2 toward the end. Cutting back on fats usually helps, except coconut oil, but Adrian also had less trouble with olive oil and I used I Can't Believe Its Not Butter Spray on vegetables, pancakes, waffles, etc because it has no fats and adds flavor. I also got unflavored Whey protein powder from GNC and added it to whatever I could get it into...scrambled eggs, waffles, pancakes, gravies, instant breakfast shakes (Adrian hates Ensure too) to add protein and calories. Unflavored Whey has no taste so doesn't ruin the taste of things but you may need a blender to blend it in or make a paste and then stir it in. Probably the single best help for everyone is the Megace because it at least makes them hungry and that makes it easier to get stuff into them. I believe it also help with the nausea problems.
by gregc15 on Thu Sep 23, 2010 01:03 PM
I don't know how I came upon this site But Thank you all for your comments on gaining weight back. I have been trying everything, and the only thing that was working was eating fatty fried foods, which of course shot my cholesterol up to 400! So had to stop the fatty eating. I will try the Megace and more Boost and Ensure products I guess.
I was diagnosed with advanced prostate cancer at only 42. I have survived, and will continue!!
Thanks again, Greg
by Dad1215 on Thu Sep 23, 2010 03:25 PM
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