Tx related Anorexia I need some encoragement.....

Yesterday i went to see my specialist due to low ANC and WBC so i was going to beg him to let me wait for my anc to drop to 500 before i start the nuepogen. He took one look at me and also had the Dietician in the room he said yes i need to start the nuepogen but he is more concerned with my weight, I have lost over 20LBS wich puts me under 100LBS. They told me i have medication induced Anorexia, i have not been taking in more than 500calories a day. I told him i only have 5 shots left, and he said not if i loose anymore weight this week. He said my blood and blood surgar and blood pressure are all low and that is why i pass out. I Must boost my immune system and fast. So i did take the nuepogen shot yesterday and of course i feel like ****. The dietician gave me all kinds of liquid shake recipies. And i have to work very hard at this. They explained it as my body going into hibernation and learning to survive without food, hence why I'm never hungry. They said the next thing that will happen is my immune system will not be able to kick back in after tx. My husband is terrified, he try's everthing to get me to eat, i have never experienced anything like this in my life. I thought it was normal to loose weight on tx. I did not know my body was shutting down. Has Anyone ever had this. Please any help will be appreciated. Thanks

[Tallahassee]

This when ice cream comes handy! :)
At the beginning of treatment I lost 10 lbs (I'm 5' 7" with baseline weight of 120 lbs). My Dr. ORDERED to me to gain some weight or he will STOP my treatment!  So every minute of the day I thought about different foods ... after "testing" food, I used to have a problem "keeping it".  But ice cream worked like a magic!  As a result I was able to gain weight back (and more!)...

Now I have an opposite problem - can't stop eating ice cream and keep gaining weight! :)

But you NEED food!!!!  Your body is stressed enough from medications and Hep and starving will harm you in a big way!  

Just try to eat something all the time: crackers, etc.  Glucose and egg yokes does not require digestion, so they will be in your blood stream in 15-20 mins.

Good luck and keep fighting!!!

[Kalio1]

Although it is normal for people to lose weight on tx, it sounds like you didn't have any to spare to start with.

I wasn't able to consume more than 500 calories a day either and felt god awful. I started taking daily smoothies and that really helped me. I use 1 c. frozen berries, 1c. yogurt, 1c. soy milk, 2 scoops Green Defense, and a scoop of good protein powder. When the nausea was really bad, that was all I could eat. You have got to make yourself get something down at least 3 times a day,6 times a day would be better.You should probably add a big scoop of nice full fat ice cream to yours.Just drink as much as you can manage, wait awhile and try again. A handful of organic nuts can be added to it too, that is very good for you.  If I can't eat, I drink one of those for the meal. You can also add ensure or some other product but I found them to be so awful tasting I couldnt choke them down so I made my own.

[snowbyrd]

Thanks everyone, The dietician did give me some recipes, using 18% cream and powdered milk, i put some frozen fruit in it with some sugar. She said for the next week it is all about calories, cookies donughts etc......I never ate that kind of stuff in my life. I did do the cream shake this morning. My Italian mother in Law whom i love to bits, has threatened my husbsnd that he needs to shove the food down my throat and if it comes back up just keep shoving, and if he can't do it she will. That was the only thing that made me laugh yesterday. Some people and especially Italians think if you are sick you just eat eat eat and you will get better. I guess she is kinda right in this case. My husband said he promised he would not try to shove food down my throat......I guess i scared him the one time i had Riba rage and threatened to spray windex in his eyes. I don't think i would have done it.....I hope.

[FlGuy]

It's a tough part of tx, having an interest in food.  What's worse is any interest that you may have can change from day to day.  The doc and the dietician told you the why, you need to work on the how.  I've found that having a variety of stuff in the fridge/pantry is important because you never know what might be a little bit palatable.  Stuff like cereal (including oatmeal, farina), nuts and fruits are good.  Months ago here we discovered that a bunch of people had hankerings for egg salad, for example.  First tx I went for more 'confections' but really trying to get more aligned with more substantial stuff this time.  Hey, eating is no more a challenge than throwing these meds into yourself every day.

[nygirl7]

I went through the same thing at 5'7 and 120/125 baseline weight once I lost 20 I got worried (I lost it hard and fast because of the thyroid in addition to the not being hungry).

That is when I went out and bought myself fudge pops and ice cream. I aws never hungry BUT my mouth was alwasy SO SO DRY (gosh 7 weeks later I had forgotten about that) that I WAS thirsty so I "ate" calories that way.

Rootbeer floats...I'd let the ice cream get really melted inside and drink them...things like that.

I started to "nibble" on cookies and it was amazing how many I could eat during the day without realizing it.

All of a sudden now I'm back to the 120 and now at PLUS weight at 130. Well I've never weighed that much in my LIFE!

Once you are off thet meds the weight will come right back on.  If you can't eat...try to get calories in your drinks.

It DOES work. In fact DIETING now (God I can't believe it!) the first thing to go wasna't cake or ice cream or anything (cause I hardly eat it when not on treatment) but the drinks. Coffee with half n half and sugar, iced tea (Lipton...the can you scoop out of the can) those things I had "learned" to eat during treatment and I LOVED them!

Of course these are empty calories but...calorires they are none the less.

Good luck - you will be amazed how quickly it will come back on once you are better.

[dperry10]

I am kinda having the same issue.  I am just not hungry.... period.    I have no hunger pains, and no desire to eat at all ..   I have lost 37 lbs already, but I am overweight and can stand to lose it.  I talked to dr today about my Riba, and whether he was weight basing it ?  have I lost too much and need to reduce, or what ?   He says, no you are still in that same 1200 per day on the riba.  Keep it up he says, but you have to eat....   I do eat about 2 bites.. and I am done,   I do that about 2 - 3 times a day, so I am getting something, but there are days that I have gone without anything all day except yogurt in the morning with my Riba.        Mike tries to get me to eat, but ususally I say, I ate something earlier.    Just to get him off my back.    We are both losing weight, but he has been on this diet with me since Sept, then of course I started treatment in December, so .........   But we are almost neck in neck of what we have lost, I lost a few more so far, but ......   we know why.  

I just had my 3 month PCR test, and we will see what happens.... Am I a responder ..... or NOT....

[nygirl7]

You have to try and just munch on anything at all that you can to put calories inside or drink shakes.  There really isn't any other way around it.

Is there not some treat that you really really love that you could just nosh on?

I made myself eat during tx but because of my thyroid kept losing and losing.  I was never hungry and most food made me want to throw up but...I could put down a box of mallomars while watching tv and I had IMMENSE fun picking out different cartons of Ben and Jerry's.

I would force myself to eat high cal food before cutting the riba.  I don't honestly know how sick the riba makes you anyway - I think it's more the IFN.

you HAVE to take the riba with at least a yogurt shake or something to coat your stomach or you might feel ill(er) from that.

Good luck.

M&Ms?  Anything?

[snowbyrd]

Just be careful with the not eating all day thing. I think thats when it all went bad for me, same thing i figured if i ate a yogurt in the morning with my riba and a shake at night with my riba i would be ok. NOT. I think my new idea is to set the timer on the stove for every 2 hours and i will force myself to eat something with some calories. I think the dietician is right about the body goes into hibernation......cause i would not even think to eat if someone did not mention it.....and even then its tough. Let's check in with each other every day and be totally honest about what we eat. It would be great to have the encouragement.

[snowbyrd]

I wish there was something that i found appealing.....the dietician said once i start getting the shakes into me the desire will come back for regular food. At this point I'm really just forcing these shakes in. And not to sound too rude but I have been pacing since i drank the last one because its going to come out one end or the other. Now i have to figure out when to take the riba so it stays down.

[jmjm530]

I think they're overreating. First of all, Anorexia is common on treatment. I had it and lost 20% of my body weight (36 pounds) just like you did. More likely, the reason you have no appetitite is more due to taste/appetite alterating effects of the drugs tnan the weight loss.

I also disagree about your "immune system not being able to kick back". Again, I think they're overreacting. That said, nutritional advice is good and you should make best efforts to put some calories away because 20% weight loss is on the edge as my doctor put it.

Anorexia is quite common in HIV treatment as well and there are a number of drugs an experienced doctor can intervene for appetite/weight stimulation , including steroids. But with only five weeks to go, you will probably be just fine as long as you don't lose any more weight.

BTW Sarah Lee Frozen Cheesecakes have about as much calories per weight as anything I found in the supermarket. As far as liquid meal enhancer's are concerened, most calories per volume was Prosure, as opposed to Ensure. Cancer patients are often given Prosure for chemo weight loss and it has lots of good nutriments in it as well although does not taste quite as good as Sarah Lee.

Glad your husband is helping and concerned but no reason for him to be "terrified" because this type of weight loss is quite common on treatment.  I'm guessing your doctors aren't hepatologists (liver specialists) but I've been wrong before.

Be well,

-- Jim

[jmjm530]

Just wanted to add that although it seems like it wont, your appetite WILL come back 2-4 in full, 2-4 weeks after you stop the drugs. Six months from now you will be worrying about the xtra weight gain which inevitably comes with the end of treatment.

-- Jim

[ladybug52]

So glad you're aware of what's going on and are trying to do something about it. It's hard on the body though, to go from no food to super rich fattening food. Good luck, between you your husband and Mother-in-law, I'm sure you'll find a way to get some nourishment and calories. You don't want to end up in the hospital, so keep pushing fluids and calories. You'll enjoy that vacation much more if you can get some nutrition in you now!
Bug

[jmjm530]

Truth is he would have pulled you off treatment if it was the emergency he inferred. Just make more efforts to get those calories down and you should be fine. You can add either fruit and/or ice cream to the Prosure Liquid Replacent meals for even more calories. Then you drink as much as you can tolerate. Wait a few hours and drink some more. If they don't have Prosure in Canada, I'm sure there are other meal replacement drinks around like Ensure, etc. Lots of Calories in a Big Mac as well if can tolerate :) You only got five weeks left, you should make it fine.

-- Jim

[snowbyrd]

BIG MAC lol I'm a vegatarian Jim. I think I will try the sara lee instead. And my  DR did comment that i will be pulled from tx if i can't at least maintain this weight, although they would like to see me gain something by next week. He said i  can not go 5 more weeks losing at the rate i have been. I have made it this far so i will continue fighting to gain something for next week.

[jmjm530]

Sorry for the vegetarian insult :) I agree that you should try and stabalize at your current weight. Don't know the details of your case -- stage, viral response, etc -- but it's quite possible that your doctor has weighed the risks versus rewards of furthering treatment and set the limits he did. In my case, I was almost at your point (20% loss of weight) at only 16 weeks of treatment with close to a year left, and as a geno 1, stage 3, my doc wasn't going to stop. Next step would have been something like the weight gaining drug Megace or testosterone or steroids like the weight-lifters use. Fortunatly my weight did stabalize.

-- Jim

[snowbyrd]

Hey don't steroids make you want to eat meat........just kidding......and i was not insulted about the big mac thing......eveyone else in the house eats meat.
Thanks again for helping me out. Also i just want to say that I'm glad you posted to the person who did that shot last night and is not going to continue. I wanted to post and just tell them not to subject their body to this poison. I would not have continued except that i was UND at 4 weeks. If i relapes i will be waiting for something new to come along. I have no liver damage and i guess i thought i did all my research but it is what it is and I don't like it. I guess what I'm saying is my views on tx have changed since being on tx, and i dont want to discourage people, but unless i was real sick i dont think i would do it again.

[jmjm530]

Didn't want to get into the details, but being non-detectible at week 4 is probably weighing into your doctor's attitude. You probably know the short course studies that show equivilant SVR odds at 16 verus 24 weeks for geno 2's and 3's who are non-detetible at week 4. I'm not saying he should stop treatment, but if he decides to, I would not fight it. He's probably just weighing the risks versus rewards of continuing another five weeks and concluded that if you lose any more weight, then the risks win over and I agree. Gain weight and treat for 24, or lose weight and stop at 19 -- I think you're going to SVR in any event. Be well.

-- Jim

[orphanedhawk]

  I have felt so schitzophrenic since starting tx  where food is concerned. I feel hungry and nauseous at the same time.
     I've never had to force myself to eat before. For me, hot cereal goes down easily, especially in the morning. I keep healthy munchies, raw cahews, dried unsulpered fruit, fresh fruit, whatever I can eat small portions of, easily available.  Eat bananas. Take just a few bites. Start slow.  
I know the days I feel better and on them I eat  all day long.
    I think you'll do fine but your body needs food for sustenance.
    

[snowbyrd]

Thanks for sharing, as always you put my mind at ease. Yes my DR is a Heptologist and also specialist in Infectious disease. He is very well known in Toronto a the University Hospitals and travels to 3rd world countries txing aids and hcv and other issues. That said he is still human, and i think maybe he was trying to through a bit of a scare into me, not to be mean but to get me to make it through these last few weeks. I have more bloodwork done this monday, so i will know if this nuepogen is working. I know my bones feel like they are on fire. I'm not to pleased with the sides from it. Thanks again Jim

[nygirl7]

OH I REMEMBER NOW - MY SHRINK (Who works in drug and alcohol recovery hospital (from my addiciton years ago to Pain Meds) knows a LOT about HCV because most in the hospital ward do have it - he told me that if I lost TOO much weight there were antidepressant drugs that would EASILY cause me to gain back weight.

Perhaps THAT is worth checking in to!  It's true I remember that some ADs DO cause TREMENDOUS weight gain!



The body metabolism goes into hibernation ANY time we don't eat enough calories a day.  It thinks it's starving and tries to conserve the weight. Which is why on a real diet they tell you to eat SEVERAL small meals a day to keep the metabolism up.

[snowbyrd]

Thank you all, I'm trying to do this. It really helps me when i hear ideas and other peoples thoughts who have been through this. You guy's are all great and i think i would have given up if i didn't have this place. Thanks again

[zoomom]

I was down to 85#, on procrit, antidepressants, etc.  I lost 45lbs, Dr. threatened to stop treatment if I didn't eat...but nothing worked.  Finally, when I told my adult son I thought I was going to die because I felt so weak, he took me to another Dr. and I got a medical marijuana card, and began eating "medicinal cookies/brownies",  I truly believe that saved my life...

[Sincebirth]

I am a 33-year-old male and have been on TX for 61 weeks.  And am 5'-8".  I started tx weighing 158 lbs and now weigh 122 lbs.  Lost 36 lbs.  I was always thin but somewhat muscular never had much fat to start with.  Now I am just skinny as hell and lost all muscle tone.  I lost most of my weight in my legs and butt and shoulders.  I eat normal size meals in the morning and lunch but I lose appetite at night.  I think the tx has done a number on my health.  

After reading this thread I am going to try harder to gain weight.  Does anybody think that that will help my immune system?

I am going off tx in about 11 weeks and want the strongest immune system I can have.  

Going to try and gain 10 lbs before the end of tx in the next 11 weeks.  Is that too fast?