anyone have any input into which is safer for synovial sarcoma pts to increase appetite, especially those on votrient?
What this machine does ?
The loss of appetite/taste with Votrient is a serious issue for me. I have lost over 20 pounds while on the drug. I was just told about megace yesterday. Not sure of the side effects. I have taken marinol... it's just marijuana in a pill form. It really works in increasing the appetite, but the down side is that it makes me too drowsy. I'm going to go back to it and give it a chance before I try the megace. I think my system just needs to get use to it.
The real problem for me is not the appetite loss, but the food has no appeal because it taste horrible to me even if I season it well with herbs. Smells good, but tastes bad :(. I'm still trying to find foods that will be pleasing to my palette so I don't avoid eating. Yes, this is a real problem! Experiment...I found that placing myself on a schedule to eat helps, because I don't forget. I try to eat fruit just to give me some nutrition, but I even forget to do this and I found a protein powder that works well that I drink it along with eating...it's like a desert because it tastes like a shake. Here is the link to it. I found it on Amazon very reasonable. It's 100% natural whey protein powder that has Goji & Acai and only 3g of sugar. Most of your protein powders are loaded with sugar. Give this a try...I really like it...very satisfying.
I used marinol for a little bit, but didn't get much out of it. Luckily, I live in California, and medical marijuana is legal. Eating some marijuana cookies during the day took care of nausea and provided some calories.
There were lots of foods that I normally liked that I couldn't eat during chemo. I remember my favorite cereal tasting like metal.
I could *ALWAYS* eat pineapple, though. Maybe it's the high level of acidity or something, but I would eat lots and lots of pineapple.
Have you talked to a nutritionist about you eating? My husband did and it made a world of difference. Additionally, everyone is different, and the nutritionist we spoke with really took the time to listen to the issues he was having to help him through. He ended up needing a great deal of protein and fluids which made a difference for him fairly quickly. He also kept to a schedule eating something every few hours because if his stomach got empty he felt awful. He kept a journal for a while to keep track of what foods helped him to feel better, what made him feel sick, what tasted good, what didn't, track his protein and fluid inputs etc. It seems like a lot of work, but it really wasn't and it helped. Finally, here in Washington marijuana is legal and we have some but didn't use it often. If you are going the marinol route, really consider MMJ instead. I am a firm believer in non-synthetics and why use something that the pharma industry took and made synthetic when you can use the "organic" instead. Just MHO on this one. I hope any sliver of this helps for you and you feel better!
Traceyb, you have a point. I would rather go the more natural way in dealing with the eating issue. When I was using the rice krispies, I could control how much I could intake and with the pills you can't...and you're right I hate anything that is synthetic. I went back and tried the marinol this week and I hated it. Yes, it worked, but I was not functional taking the dosage prescribed. So, I'm not going to worry about it. I'm just going to try and discipline myself, which is harder than it sounds. I'll work it out!
thanks to all of u who responded with your helpful suggestions. marinol doesn't work for me but megace does and i hate "synthetic" also. i have a much better appetite on 600 mg of the votrient and less diarrhea than 800 mg obviously. but my doc wants me on the higher dose due to the size and number of nodules