Do you know if Marinol can be prescribed in Alabama?
The appetite went down hill quickly and seemed to bounce back when he came home (better food, right?). But now 2 days later he is barely eating 2-5 bites of anything every few hours. His entire intake per day is less than a child's meal. he will drink a glass of milk or OJ but refuses the nutritional drinks (I got the highest calorie ones I could find for athletes trying to gain weight). I struggle to get him to drink enough. His urine is dark amber and not improving.
Has anyone in Alabama been able to get a prescription for Marinol? I think this will help. I would like to get a pill so he won't have to get the effect from a hard-to-eat special cookie (since he can't eat more than 2 bites usually).
His 69th birthday is next week and family will come to visit. I hope he will be able to eat a little. He still does best with sweets, so hoping to find a cake that is appealing!
Thanks,
dearfoam (daughter to stage 4 melanoma dad with brain and lung mets)
Comments
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First Things First
Dark amber urine means that he must must must get more fluids. Please talk to his doctor about IV fluids on an out-patient basis - this is very common and it makes a huge difference.
I don't think Marinol is prohibited anywhere. The problem is that it might help with nausea but does not have the appetite-stimulating effect that smoking pot does. We found it didn't really help.
Would he consider smoking pot? If so, I'd risk going to the local college campus and buying - practice your dumb look to tell the cops you thought it was legal for cancer patients and hope for the best. I would have done that in a second, but my husband refused (I still was very close to sitting on his chest and blowing second-hand weed in his face. . . but his nausea finally got better).
However, I'm still more concerned about fluids than I am about calories, from what you say. Dehydration makes everything sluggish - it causes constipation, which really cuts down on the appetite. Dehydration also makes it hard to clear out toxins and even can cause any medications he's on to work less well.
We were down to about 300 calories per day (on a good day) for a few weeks - it's scary, but I'm not sure it's all bad. You might need to try different things to eat - some things really didn't appeal to my husband, so I tried something else, and something else and something else. One thing that worked early on, because it was very simple and had few possibilities for allergic reactions or weird tastes: 1/2 cup Carbogain (maltodextrin - no flavors or additives), 1 scoop of Blue Bonnet Whey Isolate - original flavor (organic source - no sweeteners but a hint of natural vanilla) 1 cup of whole milk (or half-and-half if he can take the fat) and a spoon or two of Torani's vanilla (or French vanilla) syrup. Others have found this to work - it avoids problems with artificial colors and sweeteners (we had real problems with stevia, which is added to a lot of supplements) - it's best if you make it in a blender (both the whey and the carbogain clump). It's about 500 calories for a large glass.
This milkshake does not have the vitamins or minerals of the supplements, but lots of protein and carbs. After a few days of just that, my husband was able to get down some Boost Plus (all of those supplements taste like medicine. . .) so I didn't have to worry about deficiencies. He is still on Boost Plus and 2 milkshakes a day, even though he is eating normally again, as we are going for the gain.
When things were really bad, he was going in for IV fluids at least 3x per week - it really made a difference.0 -
call the doctor
Your dad's hydration and nutrition needs are probably more than you are going to get at home.
They can make recommendations for appetite stimulation.0 -
hydrationDrMary said:First Things First
Dark amber urine means that he must must must get more fluids. Please talk to his doctor about IV fluids on an out-patient basis - this is very common and it makes a huge difference.
I don't think Marinol is prohibited anywhere. The problem is that it might help with nausea but does not have the appetite-stimulating effect that smoking pot does. We found it didn't really help.
Would he consider smoking pot? If so, I'd risk going to the local college campus and buying - practice your dumb look to tell the cops you thought it was legal for cancer patients and hope for the best. I would have done that in a second, but my husband refused (I still was very close to sitting on his chest and blowing second-hand weed in his face. . . but his nausea finally got better).
However, I'm still more concerned about fluids than I am about calories, from what you say. Dehydration makes everything sluggish - it causes constipation, which really cuts down on the appetite. Dehydration also makes it hard to clear out toxins and even can cause any medications he's on to work less well.
We were down to about 300 calories per day (on a good day) for a few weeks - it's scary, but I'm not sure it's all bad. You might need to try different things to eat - some things really didn't appeal to my husband, so I tried something else, and something else and something else. One thing that worked early on, because it was very simple and had few possibilities for allergic reactions or weird tastes: 1/2 cup Carbogain (maltodextrin - no flavors or additives), 1 scoop of Blue Bonnet Whey Isolate - original flavor (organic source - no sweeteners but a hint of natural vanilla) 1 cup of whole milk (or half-and-half if he can take the fat) and a spoon or two of Torani's vanilla (or French vanilla) syrup. Others have found this to work - it avoids problems with artificial colors and sweeteners (we had real problems with stevia, which is added to a lot of supplements) - it's best if you make it in a blender (both the whey and the carbogain clump). It's about 500 calories for a large glass.
This milkshake does not have the vitamins or minerals of the supplements, but lots of protein and carbs. After a few days of just that, my husband was able to get down some Boost Plus (all of those supplements taste like medicine. . .) so I didn't have to worry about deficiencies. He is still on Boost Plus and 2 milkshakes a day, even though he is eating normally again, as we are going for the gain.
When things were really bad, he was going in for IV fluids at least 3x per week - it really made a difference.
We had a "pep talk" last night and this morning about his drinking. I told him let's aim for a sip of something, anything every 15 minutes. His urine (from over night in the bedside chair) was not as dark this morning. I went over a lot of the complications that can come from serious dehydration that could land him in the ER, or with an IV at home (which he hates the idea of) so he has made a much more concerted effort so far today. I will still let the nurse on call know (we have at least a few weeks of home health since his discharge was Wed PM). They want me to let them know if he loses more than 2-3 pounds in a day. I am not 100% on how to respond since he has lost just shy of two since yesterday, and more than two since Thursday. I think I will call and ask about the appetite stimulation. I also talked with a friend who went through a chemo battle and may hook me up with brownies.0 -
not in alabama
My doctor nephew who works at UAB says no medical marijuana in Alabama. Like you, I looked at alternatives and there are some special peanut butter cookies in the bottom of Mom's freezer but we never used them.
I've long held the position that as along as she drinks, and drinks, I will not make her eat. She loves those fancy chocolate milks, like cookies and cream.
Mom is late stage ovarian cancer, 80 years old, and yesterday we learned of mets in lungs and other places. She has opted to do semi-chemo (an oral agent) to preserve quality of life yet still feel like she's doing something. It's not much more than placebo, but that's what seems best at this point.0 -
he wouldn't be smoking anythingBarbara53 said:not in alabama
My doctor nephew who works at UAB says no medical marijuana in Alabama. Like you, I looked at alternatives and there are some special peanut butter cookies in the bottom of Mom's freezer but we never used them.
I've long held the position that as along as she drinks, and drinks, I will not make her eat. She loves those fancy chocolate milks, like cookies and cream.
Mom is late stage ovarian cancer, 80 years old, and yesterday we learned of mets in lungs and other places. She has opted to do semi-chemo (an oral agent) to preserve quality of life yet still feel like she's doing something. It's not much more than placebo, but that's what seems best at this point.
I wouldn't suggest he smoke, that's be easy enough to get from friends. He has lung mets and blood clots in the lungs, on home oxygen, so smoking is out (and I am not willing to do the second hand bit as I've never been a fan of smoking anything - makes me gag).0 -
15 ozdearfoam said:hydration
We had a "pep talk" last night and this morning about his drinking. I told him let's aim for a sip of something, anything every 15 minutes. His urine (from over night in the bedside chair) was not as dark this morning. I went over a lot of the complications that can come from serious dehydration that could land him in the ER, or with an IV at home (which he hates the idea of) so he has made a much more concerted effort so far today. I will still let the nurse on call know (we have at least a few weeks of home health since his discharge was Wed PM). They want me to let them know if he loses more than 2-3 pounds in a day. I am not 100% on how to respond since he has lost just shy of two since yesterday, and more than two since Thursday. I think I will call and ask about the appetite stimulation. I also talked with a friend who went through a chemo battle and may hook me up with brownies.
he's downed 15 oz in the past 5 hours, ate a 1/2 piece of bacon and a small serving of grits, and some pineapple (about 4 cubed pieces or 1/4 cup). And my FIL brought a 130 cal. mini moon pie that quickly vanished. So it isn't AS bad today, but I may be jinxing myself.
I switched from using the big mug to a small 8 oz glass. I think it's less daunting of a task to try and finish of a 8 oz of whatever every 2 hours he's awake.0 -
Marinoldearfoam said:he wouldn't be smoking anything
I wouldn't suggest he smoke, that's be easy enough to get from friends. He has lung mets and blood clots in the lungs, on home oxygen, so smoking is out (and I am not willing to do the second hand bit as I've never been a fan of smoking anything - makes me gag).
I forgot to mention that Marinol is not "medical marijuana" but synthetic marijuana - most folks claim it does not work as well as the real stuff. Marinol is legal but controlled (like codeine) whereas medical marijuana is only legal in some states.
No I wouldn't ask someone on oxygen to smoke - there are other appetite-boosting drugs. I hope the current upswing continues. (Not to harp on an unpleasant topic, but you really need to watch out for constipation - some chemo folks have landed in the hospital just for that. . . )0 -
fruity fiberDrMary said:Marinol
I forgot to mention that Marinol is not "medical marijuana" but synthetic marijuana - most folks claim it does not work as well as the real stuff. Marinol is legal but controlled (like codeine) whereas medical marijuana is only legal in some states.
No I wouldn't ask someone on oxygen to smoke - there are other appetite-boosting drugs. I hope the current upswing continues. (Not to harp on an unpleasant topic, but you really need to watch out for constipation - some chemo folks have landed in the hospital just for that. . . )
luckily he is eating fruit and we have not had this problem yet!
there is a bbq marathon on the pbs create channel today and he has been getting a little more excited about food just watching them cook! i am about to take some ice cream in there!0 -
Rotisserie Chickendearfoam said:fruity fiber
luckily he is eating fruit and we have not had this problem yet!
there is a bbq marathon on the pbs create channel today and he has been getting a little more excited about food just watching them cook! i am about to take some ice cream in there!
Was the first really solid food my husband ate when he was emerging from his weeks of non-eating. I had been giving him home-made puree of everything soup and mashed potatoes, along with the Boost and milkshakes. One day, we were eating lunch, and I had added a few leftover wings (from the rotisserie chicken I'd fed the kids the night before) to my plate (I tried to eat whatever he did, but I didn't want to waste the chicken). He suddenly grabbed one and took a bite. He had to chew it for a very long time, and had trouble swallowing (he had tonsil cancer) but he did it. His interest in food increased from there - my son was very excited that he could make his famous pulled pork (a less spicy version) for him.
Yay for bbq!0 -
the chicken is marinatingDrMary said:Rotisserie Chicken
Was the first really solid food my husband ate when he was emerging from his weeks of non-eating. I had been giving him home-made puree of everything soup and mashed potatoes, along with the Boost and milkshakes. One day, we were eating lunch, and I had added a few leftover wings (from the rotisserie chicken I'd fed the kids the night before) to my plate (I tried to eat whatever he did, but I didn't want to waste the chicken). He suddenly grabbed one and took a bite. He had to chew it for a very long time, and had trouble swallowing (he had tonsil cancer) but he did it. His interest in food increased from there - my son was very excited that he could make his famous pulled pork (a less spicy version) for him.
Yay for bbq!
in some tequila, lime, spices, etc., destined for the grill. will make some little soft tacos from that. pinto beans and rice are on the stove (he loves beans and rice) and the house is smelling pretty good. he really perked up when i mentioned pinto beans.
i think i will get some good bbq sandwiches this week for him. i think he will have a hard time resisting! we live in a bbq riddled area...0 -
Will you adopt us?dearfoam said:the chicken is marinating
in some tequila, lime, spices, etc., destined for the grill. will make some little soft tacos from that. pinto beans and rice are on the stove (he loves beans and rice) and the house is smelling pretty good. he really perked up when i mentioned pinto beans.
i think i will get some good bbq sandwiches this week for him. i think he will have a hard time resisting! we live in a bbq riddled area...
It sounds like you make really good food - I could use some pampering (not to mention some tequila) right about now.
Just kidding - save that caretaker energy for the one who needs it. I'm just going to indulge in a bit of fantasy that I'm as awesome as you. Or that you are my daughter and have come home to spoil me. . .0 -
beans like cardboard!DrMary said:Will you adopt us?
It sounds like you make really good food - I could use some pampering (not to mention some tequila) right about now.
Just kidding - save that caretaker energy for the one who needs it. I'm just going to indulge in a bit of fantasy that I'm as awesome as you. Or that you are my daughter and have come home to spoil me. . .
i have such a hard time comprehending the "no flavor" issue. oh well! he ate a cookie and glass of milk instead. we had a nice supper and didn't have to share the chicken!
the chicken was super easy. i just threw some lime rinds, onion tops, garlic, tequila, lime juice, ground cumin, salt and pepper and olive oil in a bowl with the chicken breast strips. they soaked about 25 minutes before they hit the grill. shredded them when done and topped with fresh diced onion, jalapeno, cilantro, cheddar, baby spinach, salsa and a little more lime.
the beans simmered with onion that had sauteed with olive oil, and i added S&P, oregano, cayenne, cumin and smoked paprika. the smoked paprika gives vegetarian beans a nice savory quality with out having to use sausage or whatever.
far from flavorless to us anyway! i thin kit did hubby and i some good to do some real cooking! if you were around i would surely share!0 -
68oz of liquids!dearfoam said:15 oz
he's downed 15 oz in the past 5 hours, ate a 1/2 piece of bacon and a small serving of grits, and some pineapple (about 4 cubed pieces or 1/4 cup). And my FIL brought a 130 cal. mini moon pie that quickly vanished. So it isn't AS bad today, but I may be jinxing myself.
I switched from using the big mug to a small 8 oz glass. I think it's less daunting of a task to try and finish of a 8 oz of whatever every 2 hours he's awake.
I have been pep talking him to drink more liquids, and mixing a lot of carnation instant breakfast along with Hershey's into whole milk. who knew you could cram almost 640 calories into an 8 ounce glass?
He ate a little better today, too, and drank a lot of milk, juice and water. Mostly goes for sweets, but asked for a plain cheese sandwich for supper and he ate all but the crust, and then asked for one more slice (a half sandwich). He wasn't AS sleepy and was less lethargic.
Anyway, by the end of the day I think he'd had well over 1300 or 1400 calories and 68 ounces of liquids. I told him he did good and so I won't call the nurse on him... yet! This is so much better than the latter half of last week!0
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