Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Because significant weight loss can be the reason for leaving the Cediranib study, I wonder if members who have been able to stave off weight loss can post what they have done to try and maintain weight.

When our daughter was on Sutent, she had mild weight loss, but she also had significant changes in her taste - and she said she couldn't taste certain things and really had marked preferences. She lost maybe a few pounds over the months and actually put more back on quickly after stopping the drug. I remember in some of the kidney cancer forums, members were posting what they found helped with the taste changes.

We are not on Cediranib now (on PF02341066 or crizotinib), but this is the first trial where we are having to deal with weight loss too - decreased appetite and all.

Sometimes in some of the 10 year plus members of the ASPS club- like Amanda Minderlein, it seemed that weight loss during treatment still resulted in benefit later. But others with ASPS, severe weight loss was not a good thing. With severe weight loss, changes in the immune system and general healing also are known to occur.

Perhaps those of you who are on Cediranib longer that a few months could share if you have any tips for keeping weight on? Thanks in advance. : )

I should add that some of the increased appetite strategies that come to mind would be possibilities like Danazol, medical marijuana, Periactin, and Depakote.In some cases, though, a clinical trial might not let you add a new 'medication'.

Sree is having trouble maintaining his weight, I think its because of the constant diarrhea. Inspite of taking loperamide he is having diarrhea 2-3 times every day, it used to be better earlier, but in this cycle it has gotten worse. Docs have suggested Whey protein, how is everyone else managing weight loss ? Any ideas ?

Arch

I am not sure how well he's feeling, and whether that's possible, but for me one of the best ways to increase appetite is to exercise.

As a matter of fact, I know that swimming is one of the best ways to get hungry. It has to do with the fact that being exposed to the cool water increases appetite dis-proportionally more compared to the extra calories burned due to the cold. For those reasons, it's not recommended in any weight loss training program.

May be worth a shot?

Arch,
We believe that the Cediranib has caused Jordanne to become Lactose intollerant. She does much better when she stays away from all dairy products. I think Whey would have that same affect. The other dietary change that was recommended for her is to the opposite of what most people need, go white. White rice, white bread. Bananas are good too.
Anything breaded and deep fried seems to give her problems as well. Probably dairy in the batter.
Jordanne had some pretty sever weight loss when she first started having sever diarhea. Since watching her dairy she has been able to put on weight and feels better most of the time.
I hope this is helpful.
Dotty Wheatley (Jordanne Gerbing's mom)

Dotty, It's interesting you say this. Dd noticed the milk effect and also problems with grease (stir fry was out etc.) on Crizotinib.
Milk substitutes are one solution (no lactose), although some people don't like the idea of soy. It's also possible to cook with the lactaid milk etc. too

Thank you Ivan, Dotty and 'F' for your suggestions. Sree can't afford to lose any more weight, stopping this weight loss is a big priority right now. I will let you all know how things go...

Ivan, I wish Sree did more exercise, right now, its just walking. Swimming is something that he enjoys, so we will get a membership in some place with an indoor pool, so that he can swim the next few months.

Dotty and 'F', I'm not sure about diary but I'm defintely sure that greasy food makes his diarrhea worse. So that's something to avoid. Things like Ensure and probably even whey supplements are making it worse. I guess snacking in between could help, he just doesn't eat anything between his breakfast, lunch and dinner. Now I call him at work to remind him to eat a snack!

Dear Arch,

Matt too has had a problem with weight loss, as has almost every other trial patient. Yvonne once told Matt (jokingly) that cediranib ought to be marketed as a weight-loss drug. Matt does not have much of an appetite. For most of his life he has had a weight problem but in the last year he has lost 50 lbs. (Not all from cediranib, some from worry and stress) So, it is very ironic for Matt to be able to eat whatever he wants WITHOUT the worry of putting on pounds.

Fried foods are the worst but it really is impossible to predict what will cause GI upset. Has Sree tried BOOST? BOOST Breeze is also a product that has no dairy, but has increased calories. That may work for him.

Does he do the trick with the Metamucil and half the water? Yvonne and Dr. Kummar told us about it, and it seems to work better for Matt than the Loperimide. Its kind of like drinking "sand" according to my son, but it does help him.

Try to make him good, healthy treats. I baked a lot while Matt was living with us. Sadly, while his weight was dropping, mine was climbing!!!!

Matt's appointment at NIH is Monday AM, maybe this time he will see Sree.

Wendy

Jordanne also finds that greasy foods cause problems. Boost has a formula with extra protein I believe.
Another suggestion, although not acceptable in all states, is to eat some bakes goods with marijuana. On the west coast it is a legal perscription. It increases appetite, helps with nauseau and also helps sleep.
Does he have to take pain meds? Jordanne had a problem no only with the cediranib, but also with pain meds causing nauseau. Now that she doesn't need so many meds it has gotten somewhat better.
I would also recommend seeing a dietician or nutritionist that specializes in cancer patients. Try anything that works. Once they learn how to manage some of the nauseau and diarrhea the weight becomes stable. Jordanne has actually put back on about 5 pounds.
My best wishes to each of you. I wish there was a fat donation program. I would volunteer immediately.

Dotty

Dear All,

Thanks for all those suggestions. Sree's local oncologist had suggested some drugs to help increase appetite and weight gain, one of them is a hormone and the other is a marijuana based stuff. Sree discussed it with his doctors at NCI and has decided not to pursue any of that at the moment. We are going to concentrate on his diet, exercise and better control of his diarrhea.

Dotty, Sree is not on any pain medications. I'm glad Jordanne has been able to put on some weight. Please convey our best wishes to her.

Wendy, Sree will try the metamucil and also Boost. He also found that taking loperamide every morning before food is better than waiting to take loperamide after the first episode of diarrhea.

Arch

I have been on cediranib for three months so car and have lost around 14lb. Most within the first two months. One thing that I have found to dramatically change gastric side affects was to change when I took the cediranib pill. I used to take it every morning, and suffered dihorrea throughout the day, then I changed it to lunchtime, same dihorrea problems. I decided to take it at bedtime, so it was taken a while after any food was consumed, by doing this my dihorrea is less frequent, I can go out in the day more without the worry of needing the toilet. Also my weight loss has almost stablized. I was losing around 5-7lb every fortnight. In the last three weeks iv lost only 2-3lb.
I feel much better taking my pill at bedtime.