ANYBODY WITHOUT A MENU, READ ON. IF YOU FEEL GOOD, DO NOT READ!!

[willows]

Well, I'd give a MENU of what I ate when I was on tx, but going for two and three days without eating from nauseau makes for a short list, this all happening after tx for 12 weeks. And now, it is happening again with cirohissis. Oh, I forgot, this is not the place for me to share my own experiences, lest I scare someone with my perspective, truthful as it is.

My anger is going to show, but I'm not caring too much right now, the undeniable, sad freakin fact is thtsome of us today will be non-responders in a year.  I'm so damn sorry about that, but truth is truth, and I damn sure you hope all treat them better than this weeks chastisment about sharing the frustration and trught of treatment or sharing pollyanna lectures bout how any of us SHOULD be posting.

My Own, your daily menu was great, especially for anyone having a great time with side effects. But what the hell are you doing for sympathy for those folks who do NOT have as easy time as you? You give as good as you get, girl. I am frustrated badly right now, not for your good luck, but those folks, sick, looking for help and encouragement. Do you offer that in your menu? I couldn't find it. Find a dictionary , lood up sympathy and EMPATHY, girl. And then praise god that you are having the luck you are. But never forget one minute that you are lucky and there are soo many folks out there suffering.  If somebody figures out the correct pc balance in posting, please let me know.  Because it ain't happenning now.  

Bent Willow

[FlGuy]

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.

[merlino]

Merlino is not my real name.

[FlGuy]

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]

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 .

[FlGuy]

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.

[merlino]

I did rememeber you and I discussing this. I hope this refill will be easier to get approved than my first round.

[FlGuy]

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.

[merlino]

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!!

[merlino]

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!!!!!!!!!!

[FlGuy]

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.

[compulsive]

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...

[Cindy10]

Peg Intron, no nausea

[GrandOak]

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?

[Kalio1]

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.

[jmjm530]

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 :)

-- Jim

[mikesimon]

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

[ladybug52]

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.

[GrandOak]

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".

[GrandOak]

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.

[hippygem]

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.

Linda

[compulsive]

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...

[compulsive]

Thanks for your support - *s*  you always make me smile.  Yeah I've been wondering about SFBAY girl too....

[orphanedhawk]

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.
  

[jmjm530]

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.  

-- Jim