Week 30 - Appetite gone

[l-horn]

Well it seems that I'm on an involuntary diet. I feel like Edgar the bug in 'Men in Black'. Tonight I went to Quiznos for a sub. Got home, took a couple of bites and tossed it. ( Veggie sammich ). It was the most foul tasting thing I've ever put in my mouth.  My weight was holding up pretty well over the past 5 months. I had lost maybe 6 pounds but this last month I've shed 10 lbs like it was nothing.

About the only thing I can eat are sweets and most fruits. Apples are too much for me ( too tangy ) and Citrus is out of the question. Bananas, Cantelope and Watermelon are a life saver. Not much for calories though. Maybe it's just a cycle and my appetite will come back around.

[GrandmaA]

The genotype 1 is the one that relapses the most, so that is why we have to take the meds for at least 43 weeks. It is a very stubborn virus. A friend of mine who when through tx last year has relapsed now. He's also a geno. 1. It's so sad. But at least he can wait for the better tx now his liver is so much better.

[nygirl7]

All food (except ice cream and cookies) tasted just horrible on treatment...I ate as many flavors of Ben & Jerry's and Hagen Daaz as I coudl find to try and keep on the weight. I ate brownie sundaes and crushed up cookies into my ice cream and have to tell you - boy that was FUN!  Don't get to eat that kind of stuff for dinner in the every day world ;)

After doing 72 weeks of treatment and not enjoying any food now I find I have the EXACT opposite problem.............everything (and I mean EVERYTHING) tastes INCREDIBLE! ARGH! Which is worse?

Try to eat whatever high cal foods you can...and even if you can't eat "proper" meals.................just eat what you can.  You won't be able to later so enjoy it while you can ;)

Just trying tomake you feel better - believe me a lot of us have been there.........and I almost wish I was RIGHT NOW :)

[ladybug52]

Well, I started researching riba last night and geno 1 recommended dosage is more standard than weight based. So may be your dr is right. I have a sn appt with my PA on Tues, the nurse who called Friday and got to hear me rant and rave said to let the PA know so she can at least try to fix it before I give up on tx. I started saying I was going to quit as a joke, but now I keep thinking, I was an early responder and und at 3 weeks, why keep putting these poisons in my body and worrying about the side effects. I had little damage to begin with, I'd hate to have long term side effects from the interfreon/riba. Still undecided what is best for me. Thabks for all your input.
Hugs,
Bug

[GrandmaA]

l-horn,
So sorry about your driving around to all the restaurants and nothing looking good. Then after you did it you threw up. Always take fat with your ribavirin. I take 9 almonds in the morning. In the evening I have a small bowl of ice cream.
I've had nausea and have vomited and this seems to help me a lot. Good luck.

bug,
Yes, the doctor lowered the riba to 800 per day when my rbc was low, but then she raised it back up a couple weeks later to 1000 and I still have lost weight, I have lost one additional lb. I have not gained any weight.

[l-horn]

Tonight I was going to pick up a big mac but decided against it as I drove by. I drove 13 miles in a giant circle eyeing every restaurant and fast food place but didn't want any of it. I finally settled on a milk shake and some fries. I threw up about an hour later.

I'll have to go the smoothie route and maybe some protein mix. Damn. I thought I was gonna cruise through this thing. 1/2 way through I can't eat and I'm taking anti-depressants. WTF !?! Things were just going along swimmingly ....

Still, things could be worse. This throwing up thing has me a little concerned.

[sfbaygirl]

My appetite sounds like yours. I tell John don't take me to dinner, it is a waste of money. ONe or two bites isn't worth the bucks. The hospital sent the dietitian up a few times a day, as I ate so little. My appetite was bad before the hospital, but I didn't lose weight at the end as I think my exercise was so nada. The dietitian told me to drink Ensure 3-4 times a day. I can't stand the Prosure with more calories, it is nasty. Eat what you can. Don't get where I was before the hospital and be dehydrated and weak, probably contributed to my getting so sick. Everything I put in my mouth (still) seems to burn, so it's hard to get things down except liquids. At first I ate ice cream non stop and lost weight. Then I had cravings for things, egg salad, avacados, cheese and apples. Whatever it was, and usually healthy, I ate. My mistake before the hospital was not drinking those ensures. They are small and easy to get down, but I didn't do it. I was pretty weak and didn't help myself. IMO whatever you can get down that's halfway healthy do it. You don't want to get weak and suseptable to more illnesses.

[Forseegood]

ingenious my good man! mediditating on food items! let the subconcious do the work for you! really good idea, as well as the menus thing!

[ladybug52]

I would think you would take 800 mg of the riba a day now that your weight has dropped. Have you pointed the weight change out to your dr?
Bug

[jmjm530]

Also don't underestimate the power of the mind when it comes to eating. I would literally meditate for 30-60 minutes at meal time, running different food images through my brain, until something 'clicked' for that meal. Riding/walking by restaurants and picking up and collecting menus was another trick that worked. Then I could rifle through them and maybe something would jog my taste budds that way. Interestingly, I often sought out foods I ate as a child and shunned most aquired tastes as an adult. Good news is that after treatment appetitie and taste buds return back to pre-treatment with a a month or so.

-- Jim

[jmjm530]

Feel lucky you lasted 30 weeks with an appetite. I lost mine at week 3 of 54. If you stay on that "sweets" and fruit diet you will lose weight like a stone unless what you mean by "sweets" are calorie rich cakes and ice cream. What you really must do now is force yourself to maintain weight by seeking whatever calorie dense foods you can tolerate. I mean "tolerate" not "like" because you may not like anything at this point. Ensure and Prosure are calorie-dense liquid shakes often used for chemo patients. Prosure had more calories and nutriments and should be at your local grocer or larger pharmacy. You can use it alone or make protein shakes with it adding fruit and even ice cream. I preferred it in a blender  with fruit and ice cubes. If that doesn't work, talk to your doc about appetitite enhancers. The very best in that regard is marijuana. Those were the words out of my doctor's mousth and if you don't want to break the law, you can get medical marijuana prescribed. If weight loss gets very serious, sometimes they prescribe testosterone or even steroids to prevent muscle wasting. Main thing now for you is not to go with your appetite -- or lack of appetitie -- and start wasting away. It can happen very fast. Eating enough calories is no longer a pleasure but a serious job you must take on right now, like it or not.

All the best,

-- Jim

[GrandmaA]

Congratulations on walking 1/2 mile. I will try it today. My appetite comes and goes, but when it goes it's usually at dinner. So I just eat about half the dinner I used to eat. I'm down to 128. I weighed 140 when I started.

The thing I don't understand, if the riba is weight based why do I still have to take 5 pills a day as if I was still 140 lbs.? Why can't I just take 4 now? People say I look really good being slimmer, I'm 5'5 1/2" tall. My son says my face looks 5 years younger. So that makes me feel good.  

[l-horn]

Yup, still taking the lexapro for now. I too have some weight I can give up to the fight but I'm not sure if it's fat or muscle I'm losing. Gotta be some fat because my stomach is flattening out. Maybe my liver inflammation is getting less. I feel pretty good this AM and managed a walk of about 1/2 mile. Hope you're feeling well.

[ladybug52]

Did you continue with the lexapro? It really made me put on weight. I gained 40 lbs in 4 yrs on a/d's.
Another way I gained was taking ambien to help sleep. You may fall down stairs or wreck a car, but it does increase your appetite at night.
I lost 22 before tx, and another 8 since. I feel bad for all of you who need to maintain your weight, but I'm just thankful that I have some fat stored and it won't hurt me to lose some more. The main thing is that you feel like cr@p when you're not getting enough nutrition. I didn't notice I had lost any weight, 8lbs in 16 weeks is not exactly starving myself!
Sorry it's happening to you, and I really mean that. I wish it were happening to me instead, and I really mean that.
Think on the bright side, at least your not flopping on the floor with a seizure.
(Is this a stick my foot in my mouth response?)