I'm sorry for your fear and your lack of success with tx. I have never heard you so frustrated. I'm sorry if I have contributed to your pain in any way. Sometimes I just blather on to entertain myself. I tried to tell you before that your tone is always reflective, but I mispelled reflective and it didn't make sense. I said that your name fit (because it makes you sound strong and graceful but I didn't say that part)
I hope you have given your liver some relief while you were on tx. I hope that by stating how you feel, you feel a little better. I'm not trying to be patronizing, your comments make me feel sad that you are going through the uncertainty of this disease.
I guess Willow's post hit a nerve. TREATMENT WAS A F*CKING NIGHTMARE. Now I said it. I hope everyone who is thinking about treating reads it and I hope their experience is totally different than mine. But people should know what they potentially are getting into and should carefully weigh the pro's and cons.
No. You did me a favor. I do have flashbacks from time to time anyway about how I felt during tx -- I liken it to post trauma stress syndrome -- and tonight just me remember it's still deep down there. Something to work on in therapy I think except no one really understands this -- doctors, friends, family, etc, -- unless they've been down the road. You are a kind, sensitive soul to say you're sorry, but again, I thank you.
WOW, okay here goes.
I stopped posting because I am having a HORRIBLE treatment experience, and people have been sooo cheerful, and "uplifting" - I have been having enough tummy troubles lately without swallowing sacharine on top of it all. Doc doesn't give me any illusions that this will get easier - just that I'll get through somehow. I am not having a "typical" treatment experience. I am having big trouble with that little side called "anorexia". I dropped a buch of weight over the holidays.
The depression I was sooo fearfull of never really happened. I can't say I am a "joyfull" treater, but certainly not suffering from anything more than frustration and "normal" disgust at my "concentration camp" apearance.
I won't get pulled from tx because of my low blood counts - though everything is hanging just above "rescue" level and have been since week three.
I am getting ready to take shot 19 of 48 and REALLY don't want to do it anymore. But I will.
They might pull me from tx if I lose anymore weight - I went into tx at a muscular and very fit 146, I now weigh just over 103. If I go much below 100 they will pull me off. I used to work out for 4 to 6 hours a day depending upon if I was doing maintenance or preparing for a stunt or race. Did this right through the 3rd week of tx - when the anemia hit hard, and other "things" happened.
I have trouble eating, walking, or standing for more than 5 min.. working out is out of the question. My "quality of life" is non existant. This is a nightmare.
I eat what I can when I can, I AM hungry - "healthy food" is no longer the point - calories are the idea...and if I can hold it down. No GERD, no thyroid problems, it's my darned taste and smell - the food I so loved before - well lets just say I can't keep it down 'cause the taste, smell, and texture don't seem to agree with me.
Also, after the bronchitis I managed to pick up an ear infection, and then a sinus infection - so vertigo on top of everything else. And I am sure the antibiotics are not helping with the food issues...
Managing to get dressed, eat off a clean plate, and comb what hair I have left seem like major acomplishments to me now. Going grocery shopping (physically and emotionally draining) is like completing an enduro.
And then I read about folks WORKING, RUNNING MARATHONS, EATING whatever they want, dealing with children, job losses, insurance, spouses, etc... some with lower blood counts than mine, and they just keep going on...
It makes me feel like I must be the biggest WIMP in the world - I am so weak I am unable to even walk around my house without stopping to rest every few feet, I can't deal with noise at all, and if I had to deal with a REAL problem right now I'd probably just let things fall apart while I hid under the covers. Fortunately - no big troubles and I hope it stays that way. Just me and my sides...
Doc says my sx troubles are more from the anorexia and infections than my blood counts. If only I could find more food that didn't taste and smell so bad that they make me hurl... right now it's pbutter, ice cream, tomato soup, boulions, and fruit pops.. chocolate isn't even good anymore... Been using Jim's visuals to try to work up to it - nothing works. Been holding steady at 103 for one week now (I think it's the icecream mixed with ensure) - so I am daring to hope that I might be able to finish this tx, miserably, but at least finish.
Yes, Jim. I am going 48 weeks- I REALLY don't want to do this again!!!!
I have nothing "uplifting" to say right now, so I just read.
Thank you for this thread and the opportunity to whine and complain about my not typical tx experience.
Ironic how most of our country is headed towards obesity at alarming rates. Syndrome X? While so many people in this country LIVE to eat, we have our own group that are trying to EAT to live. Has anyone tried appetite stimulants? I know in long termcare they have meds for people who are becoming anorexic. I feel that sense of smell strongly affects appetite, I have a more heightened sense of smell than the last time I was pregnant. H-mmmmmm, no periods either could it be? ;)
This is crazy, but before tx I was kind of looking forward to dropping a few lbs. Now after reading your stories, I'm really ashamed of myself.
Compulsive, I wondered where you've been. I am also very worried about SFBAY girl.
Willows, you reflect the diversity in our group. (I keep pushing that reflective word at you) It opened up a lot of feeelings that had been buried beneath the surface or lurking on the edge. Thanks.
Haven't really been following your issues with "MyOwn", so won't get into that, but I will offer my sympathy to what you endured on tx and comment a little on food while treating.
A lot of us, take eating and a good appetite, etc. for granted. I always did until I started treating. Very soon the nausea hit and then the GERD (reflux) and then some very strange things started happening with my relationship to food.
Healthy foods I used to love, no longer appealed to me. In fact, some of them I couldn't even look at any more. Within a month or so, I lost 20 pounds I didn't have to lose and desperatly tried to find foods and ways to psyche myself to eat. For several months I would literally meditate for hours on different types of foods and dishes trying to come up with an appealing image so I could eat something both to keep my weight up and to get that d*mn riba down.
It was so much beyond "eating healthy" -- it was eating to "survive", because I knew if I kept losing weight I'd probably have to stop treatment and as a stage 3, that really scared me.
So, I ate whatever I could literally stomach, with the health concerns of the food quite secondary, cause if I can't eat it, doesn't matter how healthy it is.
I envy MyOwn, Rocker and others, who have had few side effects and are able to eat what appears to be a very healthy diet on treatment. Just want to add that many of us are were/unable to do that even if we wanted to.
Unless you go through a severe eating disorder -- and that is just what treatment is to a lot of us -- you don't understand how much normal food consumption affects us both physically and mentally. To say it was a nightmare is an understatment. Eating well may indeed lessen sides, but sides can also make "eating well" impossible for many of us.
I am sending you a heart to heart cyber hug. I'm so sorry tx didn't work cause it's obvious you gave it all you could. If it's worth anything, eating was almost as much of a struggle for you and Jim as for me. Healthy eating? Yeah, right! Just whatever I could get down.
I hope you can soon get back to enjoying eating. I'm 5 mo post and still have some trouble but it is sure a lot better. At least there is no metal taste.
Here's another hug. I hope they make it to you.
my heart goes out to all who tx. I have had the worst sx's since starting tx. my counts are always borderline rescue,my thyroid is still screwed up but I eat what I want, when I want and have only dropped 25 lbs during tx on 43 right now, so far. Jm I agree with the sentiment Tx is a F****ng nightmare, but we do wake up. Some respond and clear, some don't . To the ones who don't my heart weeps for you. I could be one myself in the future but for here and now this is what I need to do. Lets hope they get in gear and find something to tx those who do not respond..try to keep smilin..i know its hard...:) shelly
You'd think that finally saying it....Treatment was a ******* nightmare...would make the experience less soul rattling. But even my tirade about MyOwn posting her extensive menu on her second shot did not make me forget for one minute. Makes me cry to remember...and I am not a baby, nor weak, nor unprepared. Treatment was just was it was, a place to never go again unless it will save my life. And even then, I'd have to have better odds than 50%.
But I shed two tears with your name on them, for making you remember, for striking that chord. To say I'm sorry is pathetic, but I think you know how I feel.
Bug, do not worry about anything. There are no words that can truly hurt me or make me confused, but I do get angry when I read that perhaps someone (not you) is trying to further a personal agenda by posting an unbalanced post, just to prove a point. And I have to count myself in that group.
Now, I will work on forgetting the 25 weeks I spent...well, not having much fun. It is something I do on a daily basis, still having the virus, nothing to do to fight it, it is with me always. So somedays I just choose to spout unbalanced things, call me human and forgive me when you can.
Right on, jmjm. Forgive me for bringing it back tho. Two more tears with your name of them lost, but not wasted.
Look @ food in a different way. To heal and repair, your body needs certain things. Work to get those nutrients and don't add any more poisons that your body has to deal w/.
I never have heard that once a person is end stage, bled out and has cirrhosis and de'compt for years, a person becomes not 'de'comp'd, end stage.
So I guess I'm end stage, de'copm'd forever and will always have no appetite.
So I eat the same thing over and over. Organic oatmeal, home made power drinks, juiced veggies, lotsa supplements and herbs and teas. My meals look the same basically. I don't like to cook, I don't like to eat. I'm never hungry and if someone didn't care and remind me to eat, I wouldn't.
B/that's just the way it is. So get over it. A lot of us will never have an 'appetite'. B/ to live you have to get nourisment and anything you put in your body should be working for you, not against you. It's fuel not food.
I didn't realize you were having it that bad overall -- especially with the food and weight loss.
When I dropped from 176 to 150, my doctor started talking about intervening with testosterone and/or anabolic steroids. While this may sound wrong at first glance, if you go over to any HIV discussion group, you'll find that both are used for severe weight loss and wasting which is what's happening to you.
In addition, there are some anti-depressants that can increase your appetite with their sfx profile, as well as the drug Magace which can also potentially add pounds fast, although they usually come on as fat, not muscle. Lastly pot or medical marijuana (Marinol), has been extremely helpful in gaining weight for many in your condition. Pot definitely would have benn my first choice, but it just doesn't agree with me, so it was out. Another thought -- haven't read about it -- might be hypno therapy where the hypnotic state might let you tap into your old associations of food and taste. Acupunture is another thought.
Here's a link from Tuft University on Nutrition and HIV research that goes over some of this: http://tinyurl.com/yakakn
So, depending on how important it is for you to stay the 48 week course, you might discuss with your doctor some of the appetite inteventions above, or perhaps see a doctor that specializes in eating disorders.
In my case, I was ready to do Testosterone and/or metabolic steroids if I dropped too much more weight. Fortunatly, it stopped dropping just south of 150 pounds so I didn't have to.
But I was a stage 3. Should I have had less liver damage, probably would have cut my losses and called it a day with treatment -- my thinking being that the risks of overall ravaging my body both with the tx drugs, weight loss, infections and sides was greater than the benefits of potentially getting rid of the virus. But that is me. From what you've posted it's obvious you're an extreme competitor and tougher than nails. While that may work in your favor during an Enduro, IMO that kind of fighting spirit can sometimes become counter productive during treatment by putting your body through too much. I always likened fighting Hep C more to war than sport. And in war, strategic retreat is a big weapon used by the best generals. What it does is it allows the troops to survive and regroup to fight and win the battle another day. Certainly not giving you any advice here, just some thoughts.
Lastly, there are a bunch of tips I read somewhere about food problems like letting someone else do the cooking because kitchen food smells can kill the appetitite of someone with food/taste alterations. I also did some research on the highest calorie foods and for a week or so eat a lot of that frozen cheesecake until it got too bad for my reflux.
All the best. You're no "wimp" as you suggested. Just the opposite. You simply cannot compare anyone else's treatment experience with yours. Trust me, the person who posted that they ran a marathon is not having your side effects at all. I guarantee that.
Thanks! And - I am gonna try the smoothies...;-)
Thanks for your support - *s* you always make me smile. Yeah I've been wondering about SFBAY girl too....
Hey, it sucks doesn't it? I mean thats just the reality of it. I thought I was doing okay now I'm looking at possibly being pulled because of low platelets. And it brings up all my angers about the way medicine is focused in this country as well as many things.
I went to Bangkok to see my dentist prior to tx. Two days before I returned home I was awoken at 4 a.m. to a boooming voice yelling, FIRE. The room next to mine was a blaze. As I ran out, I heard the phrase in my head," today is not a good day to die."
The point is, we never know when our time is up and in the meantime we can try to live life one day at a time, hopefully with love and compassion.
Willow, my best and warmest hugs to you.
Yeah, those frozen Sarah Lee Cheesecakes with the fruit toppings are unbelievly calorie dense and if you can get down 2-3 servings it's like two meals worth of calories. Another calorie dense food I tried was "Prosure" --lots of calories per very little volume. It's sold at many drug stores and online. Cancer patients use it a lot. Comes in flavors. Glad your doc is considering medical intervention like with steroids and Megance. Did he mention pot of Medical Marijuana (Megace). I would think that would be the first choice in terms of less toxicity. We're all pulling for you here.
Your infection side effect profile is also similar to mine. Turns out a lof of my infections may have been triggered -- or maybe it was the other way around -- by LPR (aryngopharyngeal Reflux). LPR is often called "silent reflux" because it presents without heartburn in the majority of cases. It's often overlooked in cases of hoarsness, throat, ear and sinus infections. Best -- and only doctor -- do do the diagnosis is a good ENT doctor who will look at your throat and vocal chords with an illuminated probe positioned down your nose (not painful at all). The treatment is usually a PPI like Nexium, TWICE a day, not once a day like with normal reflux or GERD. Given all the infections you have in the upper region, I don't think you have anything to lose by seeing an ENT. Also, forgot if you're on Procrit or not? It can help with the anemia/weakness but my guess is that a lot of your weakness is being caused by severe weight loss.
I was wondering where you had gone. I'm so sorry you're having such a rough time. I am so sorry to hear this with you or with anyone. I truly can't imagine what that is like. I've never been that sick. Those kinds of side effects scare the heck out of me, and I honestly don't know if treatment is worth all of that. I can't say that I would go that distance and endure that kind of illness from treatment - dwindling down to something I can't recognize or no one else can. I'm reminded of the song "Philadelphia". I watched a Youtube video on some guy enduring treatment. It was just dark and dank and looked like death and didn't get better. It was the pits watching that thing.
I might joke around here or seem lighthearted, and for the most part I am, but I am in no way unafraid or gleeful. My quality of life has diminished greatly (severely) after 3 decades Hep C, but I am still doing OK. I can eat, cook, get up and get going, work in the yard, the garden, take care of everything in the house, play with the dogs, play with the grandchildren, wheel my mom around, get in the boat and go, etc. I know from reading your notes that you are a strong woman and that it's just part of your makeup to get out there and do things. You're courageous and adventurous. That is your life (or....it's at least a very central part of you that makes you who you are and makes you tick, so to speak.) I honestly don't know if those kinds of side effects from treatment that you and Willow and some others have had would be worth it to me. I fear that most, as I'm sure everyone does. I wonder if those kinds of sides - if they did happen to me and if I just held on no matter what through it all and "endured", thinking the sides would eventually go away and that one day I would be OK (but found out I was not OK and in fact worse off from treatment) if I would then get so depressed that I would not want to continue on. I honestly cannot imagine a life of dwindling away because I decided to try to treat my Hep C - a virus that might not make me any worse off than I am now. My thoughts and prayers are with you, Compulsive, and any and everyone else who's going through hell from treatment. I wish I could take some of the burden for you. I truly do.
I sure related to all you wrote. My heart goes out to you. Forget comparing your experience to others and then allowing yourself to feel like you aren't doing a great job! All the people that have the energy, appetite, etc. and manage to run or work full time are just luckier than some of us, it isn't your shortcoming in any way or that you are less able to meet this challenge at all! IT IS THE TREATMENT! Just the fact that you have managed to keep going in spite of all your challenges on tx is admirable. Im sorry you got hit with the worst this tx has to offer, clearly you are very strong to have endured this far.
What helped me so very much in dealing with the no appetite/not eating issue is these protein power smoothies. I can get them down even if I have zero appetite. They are not hard to make if you have a cheap blender. Get a sleeve of paper cups so you dont have to wash dishes!
I use frozen berries, which keep very well so not a lot of grocery shopping ( which can seem like climbing Everest)
soy milk, which comes in cartons and won't go bad, yogurt and big scoops of a good protein powder, you an get a big container of it for pretty cheap. Add other fruits or bananas to it. Zap it in the blender. In your case maybe you could add some rich ice cream to it for more calories. It is nutritionally sound and I can get it down even nauseated, maybe it will help you too. Some days when I cant eat at all I have one for every meal. My weight loss has slacked off and I sure am not as critical as you but I have lost 32 lbs.
The anorexia is so very hard to deal with, you hang in there my dear, I hope things improve soon. The not eating makes you feel worse and the no appetite makes it so hard to eat, I hear you on that!
I am so grateful when people post how tx effects them. I think it is important to hear it all. I know I have been blessed not to suffer much through tx, and I count my blessings everyday cause I know at any moment it can change. And if it does I know I can come here and many will understand it. I dont think people should feel like the should not post the negative, thats what this place is about. This is a support forum good & bad.
I also realized though I may not suffer much, hubby starting soon and he may suffer (cr.p shoot) and I will come here for advise for him as well.
I am sorry for all of you have suffered and feel free to vent at anytime, at the very least say what you feel!
I am really glad you brought this up. It does seem these days that the testimonies of the ones having a rough time (like I did) are to be ignored and discarded...like, "well because thats not what happened to me it just doesn't happen" But the sad truth of the matter is, it does...more often than not or the sx (and percentages) wouldn't be listed in the RX and nobody would need this forum. Thats all there is to it. TX can really bite poo.
Marinol - There were quite a few Meds mentioned - I don't think Doc did mention that one - but he did suggest the "MJ tea" with peppermint to make it drinkable.
I'm not going to tell you to break any laws but MJ has worked gangbusters for some folks for both nausea and appetite issues. It was the first drug my hepatologist mentioned and he treats tons of hep c patients. Marinol I believe is the version a doctor can prescribe. Don't know the "MJ tea" your doctor is referring to, but why don't you discuss it with him some more. You gotta put on some pounds girl!
Htownwife - gasoline and insecticide - yes, thats pretty close add - er - septic tank overflow and thats pretty much my taste and smell range right now. Texture problems too - most stuff - it's like trying to eat gravel or dirt. If your having problems right now eating - sorry for the "trigger" it got to me just typing it... gotta go hurl now..
Okay - back.
Jim - I would quit now if I thought I could get away with it. It is not recomended by any of the docs I've consulted - the combo of surgical complications and Hep C is very bad in my case and my best chance is to kick the dragon. My bile ducts don't seem to be able to handle the virus at all. We are still considering risking stoping at 24 - but - if I have not cleared the virus I'll have to go again or go on maintenance because of my particular reaction to the "dragon". Safest to go 48 - if I can...
*s* on the other note - yeah - Doc is gonna go with the anabolic steroids and growth hormone if I lose anymore wieght before considering taking me off tx. Also discussed the Magace. So far the ice cream/ensure thing seems to be helping - cheese cake - hmmm - never occured to me - I'll try it thanks!
Am seeing an ENt next week.
chcnme - Yes, what this tx is doing to my body (amd mind)is unreal and I am not relishing what comming back from it is gonna entail. One step at a time. If I did not have to do this I would quit now and wait for something else. Remember - most people don't suffer anything like this, and my stuff is from the anorexia and infections - not anemia...
I try not to think very much about what will happen if I don't clear. More surgery I suppose - shunts probably, and other things I really don't want to think about. I started tx because I was running out of time. Wasn't at deaths door (I was still very active) but my "system" was beggining to shut down due to very restricted bile flow. If I don't clear - the whole syndrom will begin again. Right now - Tx is helping -excuse the pun - the "main" problem...*s*
Oddly enough - in spite of my "wimpy" feelings - I am hopefull that I will kick the virus, and I am also hoping my sides get better....
Hi Willows,,,I felt bad after reading your post today because I know how scared you must be. You are right,,,many will be non-responders to the tx but those that are,,,,are also aware monitoring their blood work,,,liver etc and staying on top of things. Those that treat,,,I feel that it has still helped the liver and maybe set back a stage so its not all a lost cause.
Those that have no sides,,,yes,,,you would love to be in their shoes or ring their necks lol especially if you are having a hard time. Honestly,,I can't think of very many that have breezed through tx with no sides the whole time. My husband also started same time I did and first few weeks,,,he said he could hardly tell he was on meds and I was having not terrible sides but could feel it,,,the fatigue,,nausea and general not up to par but then it reversed,,,,All the sudden he was hit with fatigue and got an ear infection that took forever to clear. So alot of times,,,those that start out with nothing,,,get it later stages and vice versus.
I love your posts here and you seem like a very strong lady so that bent willow,,,I'm sure soon will be standing tall again and ready to go! This disease does that to all of us and can be very frustrating at times! Hang in there,,,Your time will be coming up!! Hope you are feeling better soon!
Jim thank you - I'll look for the "Prosure". About Megace - yep it's been mentioned alot, I don't know if I can tolorate it but may try it - if I can get it "legally" here. I don't want to try puffin a on a joint - but I have heard that a tea from the herb can be just as effective and for sure less toxic than steroids. Saving steroids for last ditch, first choices are - get colorie intake up and not take anything, Med MJ, growth hormone and on down the list..
Not on any rescue drugs thank goodness - I've been hagin just above the "need" level, which kind of s*cks but is good 'cause I doubt if super low WBC or xtreme anemia would improve this experience.
Man I sure hope I am on the "right" side of the stats for SVR - would really hate to deal with the "not" thing. All predictors are good though - low viral load, UND week 4 and 12, - even tho am treating 'cause of "bile duct thing" and my liver was "unhappy" it was still in fairly good shape when I started. I Just hope fairly good shape is good enough...
Also - because of the bile duct thing I've been on and off antibiotics for the past two years. Have had probs with infection almost constantly. These "new infections" - well we are going to make sure they are not the "same old thing different locale" but in all probability thats what they are. I HATE taking antibiotics almost as much as riba...
Jim, just so you know, as far as following any posts between willow and myself, there hasn't been any except what you read in the sx post of 1/7. When I sensed willows infered that I wanted people to 'sugar coat' (his word not mine),and I commented on it to him, several commented saying that what he said had 'nothing to do with my post. sx 1/7/07.
I think NOW it is very clear that it had 'everything' to do with my post and it bothers him to read my posts for what ever reason. I feel sad for him, I do. My intent for my posts were/are to help the 'ones in waiting'. Several on site have mentioned that my posts HAVE DONE JUST THAT. Aquarius is one.So even if she was the only one, it was worth posting, because it helped her. When I said I wouldn't post anymore, (as if I should be made to feel ashamed that I feel ok 'thus far'), several people said, 'no please keep posting.' Again, the 'audience' I am try ing to target 'I AM' reaching, (those in waiting to tx.)I can only speak from experience and this has been my experience thus far. I am supposed to lend support in what ever way I can. If it was that I had experience with nausea and someone asked what to do, i would lend a helping hand.
I only wish that others besides Rocker posted that they were doing well before I started. I know that there are others out there, Big bloc just completed 48 weeks, basically sailed through and I just found out. It would help us who are shakin' in our boots before tx, if ALL those who are doing okay to let us know 'during their ride'. I cancelled all my church gigs(musician) for the next 6 months because I thought I was going to be sick as a dog,,,which CAN and DOES happen.I am not saying people are lying or stretching the truth. But I really thought that EVERYONE goes through hell, no exception, but Rocker because thats all I saw.
Susan has had tx 7 times and at one time mentioned she didn't want to discourage anyone and was going to leave the forum for a while.I posted to her and told her what an encouragement she is(and I've done that more than once)to the forum because of her inner strength that she exhibits.She has had a very difficult time and her posts I do NOT find negative, but truthful, as to her own experience, but not only truthful, they are an encouragement to me as I see Susan as one who perserveres and had shown a wonderful attitude in such trying times that she has gone through.
As far as Willows, he was the one who started this 'sugar coat,' phrase and trying to give the impression that I don't want to hear any negatives. Thats beyond ridiculous.
I do sense he (or she, sorry don't know)is bitter which can happen to anyone, but the ones on board that have experience in dealing with someone who has hurt and pain (and I can fully understand and do sincerly sympathize )should not enable someone to stay in this mind set. Without hope, life is difficult and a person suffering from anger and bitterness left alone is at risk of causing their health to decline even if disease free. Stress increases cortisol and cortisol is an immunosuppressant(sp).
I know what I said and anyone who wants to re-read the post sx 1/7/7, do so and now you will be seeing this in the same light that I saw his post, though I was told I was wrong.
Willows, I hope you feel better soon, I really do, and I am sorry that you don't like reading my threads about feeling okay thus far. Anything can change for me anyday, i am not ignorant, but as I said, the newbies in waiting need encouragement too. If I was having sx at this moment, I wouldn't hide them as to sugar coat, i would ask the forum for help.
Wishing you the best. hope you feel better and I truly will pray for a miracle for you. don't ever give up hope. God is still on the throne and can do all things.
Megace and Marinol (medical marijuana) are different drugs. Megance can put on pounds but generally it puts on fat as opposed to muscle. Still it's part of an arnsenal you might use. Marinol is legal (I think) most everywhere, but of course ask your doctor.
Don't really want to insert myself in this because I respect both of you. Similar to myself, Willows had a very difficult time on treatment and unlike myself did not SVR which must make it many times more difficult. I do understand you were coming from a good place and just trying to convey that treatment isn't always bad. On the other hand, you have to understand that people like Willows (and myself) who treated for far longer than two weeks probably are looking for some kind of acknowledgement how bad longer term treatment can be just to put it all in perspective. Personally, what I think happened is that you got caught up in a euphoria resulting from treatment not being the nightmare you thought it might be and maybe some of your posts therefore got misinterpreted. Willows is a good person. You're a good person. I'm even a good person, some of the time.
All the best,
I should have also added that I suffer from HCV not the HBV varient under which this thread appears, so perhaps my experiences in tx have not bearing as I am not as versed in the meds or course of treatment for HBV.
In which case, to qoute the late Gilda, "Never mind".
Your attention to detail amamzes me. It's a hep c post that perhaps had the wrong button pushed prior to hitting the submit button. I didn't even catch that it said hep b.
The first time I treated I went from 170 lbs to 144 in 3 months. My breakfast was a creme filled donut because that was the only thing I could get down. I couldn't eat lunch and for dinner I would get a grilled American cheese sandwich on white toast and it was rare that I could finish it. It looked insurmountable and kind of threatening just sitting on the plate because I was so very sick. The second TX wasn't any better. I switched to Pegasys for the third time and it was day and night for me. I could have never done another round of Peg-Intron. So I know that it can be pure hell. Good luck. Mike
I could only eat twice a day as well, and if it wasn't for that fact that I needed food for my twice riba daily dosing I doubt I could have mustered up the willpower to eat twice. Eating, once (and now) a joy in my life became a very difficult job. BTW that creme filled donut sounds pretty good right about now 'cept I'm trying to lose a few of those post tx pounds :)
mikesimon makes an interesting observation that might be worthy of a survey here in that he experienced more nausea and eating disorder with PegIntron than he did with Pegasys.
I was on Pegasys and did not have much of an issue. How about others?
I am on week 11/48. My taste buds are totally gone. There is not one food that I can say tastes good. I eat to survive. I have tried everything from Rockers beet powder to NYGirls fudge pops and nothing nothing has a good taste. At this point I feel if I can get it down I don't care if its good for me or not its some kind of nourishment. My Dr. said eat whatever you can. I just keep telling myself its not forever. I do get a little frustrated everytime someone says OMG your so skinny, your so lucky - they should only know!!!!!!!!!!
I was looking for you to tell you congratulation on getting a quarter through this junk. I'm pretty sure it's week 12. And with the the angst of starting, all the stuff you had to get through, the holidays and the anemia - I think you've seen and been through the worst of it. Congratulations in having made it a quarter of the way, in no time we'll be halfway. And for our pal, 3 to go.
Hi jim, I also had a hell of a time on the treatment, it certainly was a nightmare, especially into the last month, just couldnt wait until it was time to finish, thats when the countdown really started for me.
Maybe 'my own' will reach that point in due course, but as we all cope on different levels, hopefully my own will never reach that unforgettable state.
Good luck to you 'my own', I am glad it is going well for you at this time.
Willows, I know how you feel, I am a relapser like jim, but hey, we completed the treatment, we gave it our best shot, now we need to concentrate on maintaining our bodies until another tx becomes available. I am very reluctant to go on anything just now that is anything like interferon/riba, I believe the side effects of that tx are bad.
50/50 chance of slaying the dragon. Some of us are in the unfortunate 50% others are not. While tx was not a calk walk for me, I believe I fared better than many on some sx's but also struggled hard with sx's others do not or at least not as bad as me.
Problem is no one can predict how tx will affect someone or whether they will clear or not. The bigger problem is that there is NO tx which guarantees 100% success rate without any inconveniences. Perhaps it's to struggle to attain it that makes SVR so much more precious to those which are so fortunate.
However, I could not in good consciousness tell another that the 50% chance success rate is not great enough to take the trouble over for fear that that person might well be one of the fortunate ones. The thought that they might forego tx and suffer worsening conditions, or death, based on my recommendation to not trouble themselves with tx is more than I care to think about.
I also to not harbor ill will or feelings for those who are successfull, although it was a difficult pill to swallow and to be pleased at their good fortune shortly after being labeled a nonresponder.
As long as I remain infected, I will most likely also pursue any avenues of treating irregardless of the struggle simply for the piece of mind I could have of not having to worry about possibly infecting someone else due to me illness.
But this is my decision and mine alone. I will not expect or debate with another to make the same choice as I believe tx or not tx is ultimately a decision each person must make on their own. If asked, I will be forthcoming and honest about my experiences, good and bad, and not sugar coat, hide, or anything else in an attempt to mislead them to accept the same decision.
I agree with you, antibiotics suck. I was thinking, you don't take them at the same time as the Riba do you? That made me sick when I was on antibiotics. I'd have to space them a few hours apart.
I use those smoothies to choke down my meds and I stagger them because they can make me o nauseous. Hope you are ok today.
I wanted to comment on Marinol. My Mother was given Marinol and for her it was awful. Far too strong even with small doses and it didn't work. That isn't to say that will happen to you but if you have other choices, maybe start there. For me just having to chew stuff up is a challenge at times which is why the smoothies work so good. ANother thing I remembered is instant breakfast, it has a lot of calories too and comes in flavors. If you can handle milk you could try that. I'd ue whole milk for added calories.
Keep in touch.
Willow - Thank you for letting your feelings out - if you hadn't I would have continued to believe I was alone with my extreme food issues..
Jim - *s* I think I get the Marinol thing now. I am still not sure how I feel about messing with it or MJ, but I will talk to Doc some more about it as I am pretty well willing to try anything right now. The MJ tea is tea brewed from the leaf - possibly as effective and surely less harmful than smoking. I am just not real sure I want to do anymore drugs of any sort. *smile* kind of feel like the peg, riba and antibiotics are as much as I can handle right now.
Kalio - yeah I made the mistake of taking antibiotics with the Riba twice - figured out very quickly not to do that!
I have been chugging down icecream/ensure/fruit smoothies - and they are staying down! Yipiee!!! I am also gonna try to work a little more very mild exercise into the mix since part of this seems to be not related to my eating but a general wasting problem. Hoping to get a handle on this soon...
I'll be looking for protien powder, cheese cake, and prosure on my next food shopping endurance experience on thursday...
Thanks all for your suggestions and support.
willow - I know I won't take it well at all if this H E double toothpick TX results in a viral relapse...I am with you there - that really s*cks...
Hello my friend. Happy to hear from you. Believe it or not knowing you are right with me does help make it easier. I try not to complain but some days are just so hard I need to vent to get through!!! Congratulations to you also!! This is week #12. Second week no Procrit and HGB is up to 12.6. How r u feeling! Any appetite? Our friend is at the end of a long long journey. I pray it all goes well for her. Our day will be here before we know it!!!!! Look how quick the time has gone since my first post to shot #12!!
Although the 12 weeks seems to have gone by pretty quick one of the good things about this tx is how quickly you can get behind it when you're done. This time-warp, night of the living dead thing really ends sometime. At little heads up for you, I think we have the same Ins Co. and Specialty Pharmacy service. When the meds were approved, before I started, they told me that there is a 6 month review of the 'case'. In this review the Ins. swaps stuff with the doc - before the second 6 months of the med refills flow freely. This could be just me, since I'm on a non-standard perscription (48 not the SOC 24) for the junk. My review comes up in less than 2 months. Keep your ears open or inquire when you next refill.
I did rememeber you and I discussing this. I hope this refill will be easier to get approved than my first round.
There should be little for us to do in this. The way it was explained is that the pharmacy (or ins) reaches out to the doc and the doc provides some response. But. it's worth a follow up by the patient just to insure against gaps in refills.
Just to show we all make mistakes. Specialty shorted my Riba on last shipment. I called and they told me I owed them over $1000.00. To make a long story short I owe them nothing. There are several patients with the same name as me and they screwed up. They were going to put my prescription on hold. It all worked out after I made around 15 phone calls .
Sounds like you dodged a bullet. I didn't realize that 'merlino' was such a common name that an insurance co would think you were someone else.
Merlino is not my real name.
Yeah, I guessed that. Sometimes difficult to convey a joke in a forum. BTW, my real name is not FLGuy. More accurately, I should be NJGuy.