Week 4 Results Unimpressive

[GreatBird]

So . . . I got my 4 week results today. Here's how things look:

16-Dec-08 1320000 6.12 log on day one
30-Dec-08   940000 5.97 log on week 2
13-Jan-09   629000 5.79 log on week 4

For a total log drop of 0.33. Bleh.

This is as tx is throwing me some twists and turns.

I did start the blue pills right after this. It looks like I'm very dependent on them to be the catalyst that drives the virus out of my body. So, I'm hoping big time that I don't have the placebo.

I pulled together all of my old tests and--by and large--my numbers were better before I started treating. (Cue the violins.) Feeling discouraged right now.

----

Pre tx numbers:

28-Aug-02 266000 5.42
24-Mar-03 659000 5.81
20-Oct-03 319000 5.5
15-Mar-04 165000 5.22
20-Sep-04 276000 5.44
31-Mar-05 303000 5.48
14-Oct-05      1170000 6.07
13-Jul-06         no results
23-Oct-06       lab goofed
06-Apr-07   73760 4.87
17-Dec-07 634000 5.8
02-Jun-08 399000 5.6
01-Dec-08 664000 5.82

[GreatBird]

Thanks for your comments and encouragement.

trish--I actually have been close to prone since my last shot (Tuesday). And not much better the week before. I'm wondering if it's the addition of the blue pills because I was doing better before.

epi--I cranked up the fats yesterday. Lots of straight cream when I didn't know what else to do. One of the probs is my appetite is for light things and carbs right now. It's the nausea.

sunqueen--I know what you mean by finding this disconcerting. :)  In fact, I think I'm going to try to unhook myself from the forum for a couple of days. I've been spending much too much time obsessing about all this and--though all the support and encouragement is wonderful--I think the obsession is making my sides worse.

I will check back in after my appointment on Tuesday.

[sunqueen]

I want to wish you nothing but peace and successful treatment.

I tried to say that a few times but this whole thread has made me incredibly nervous and worried to read each time I've come to it.

[Trish77]

If you up your weight by adding fat, maybe you can up your riba too.  You were only 5 pounds away from the upper riba amount of 1000mg.  With the other factors that come into play that can impact effectiveness one way or another, I wouldn't go so far as to say that you don't respond to SOC just yet with you being *that close* to being prescribed the higher dosage.

I would add fat to your diet without going to crazy to simply up the absorption factor, particularly in the earlier stages.  I would also limit how much you exert yourself physically in the earlier stages....let the drugs have as much of your body's resources as possible.  Now, I'm not saying adopt a prone position...just watch it for the first part ...I did a 10 kilometre run the first weekend I started tx and dropped the running almost immediately after that after reading advice that made sense to me.  What the heck...might as well maximize your potential in the earlier stages, yes?

You're not likely to get away with them upping your riba on a trial.  If you weren't in a trial, you'd have a far better shot at it.  As for your numbers, my hgb did a precipitous drop at Week 4.  Trying to find the copies of my results but my filing system is "in transition" at the moment.  

However....no harm in asking for the higher riba.  And by all means, ask to speak to the doctor.  When my riba got reduced at Week 14 I think it was, I argued back and forth with the NP about adding procrit to my arsenal as rescue drugs were allowed in my trial.  I was pretty insistent and she finally gave up and said she'd let me talk to the doctor about it.  The doc, when he found out they reduce my riba below a certain hgb, ordered the procrit.  I think she was surprised as heck but it also turned out very well and the next patient to come along would have gotten a better response from her on the same issue.  So take it to the doc ... all the way to the top, baby.

As for your results....it's a disconcerting lack of drop in your viral load to be sure.  Just the same....I would say there's still some kick in the can left here.  I would stay the course, see how your hgb results keep coming in ... see what difference it makes when the blue pills get added .. see if you can make some adjustments to the  fat intake .. talk to that doc about your hgb...and give it a good kick at the can.  It ain't over til it's over and you'll know when that is.  

And then if it doesn't work out, I'd go SOC with higher riba.

That's my peanut gallery comments.

I wish you all the best with this.  

Trish

[epiphiny]

VCO = Virgin Coconut Oil :))

For my Riba breakfast today I had waffles made with eggs and butter, cooked with butter, with butter on the waffles after cooked, lots of yummy bacon, bananas and maple syrup.  Mmmmm, yummmmmm!!!!  Lol, NZ is the land of good butter!

And as Jim says you may well be getting enough fat in your normal diet but sometimes it's about YOU feeling that you are doing all you can, and if eating extra fat makes you feel better and more confident with your process then go for it.

At first I was worried about the weight gain as I added 3 kilos to my tx start weight but since then I have lost 6 kgs.  Doesn't seem to matter how much fat I eat I'm not putting on weight.  Plus, I can always diet AFTER tx if required...

Mmmmm, butter!

[GreatBird]

I was popping two or three Rolaids a day in the beginning to see if they would help my stomach. They didn't, actually, but I probably messed up there. Wish I had known. I moved on to papaya enzymes and ginger root capsules and they help much better.

I don't take fiber supplements, but I do eat lots of vegetables because I like them.

[Proactive]

This is why I believe proper riba dosing is critical, and as Jim mentioned our hgb test results are the best window we have available to us (must of us)to detect riba serum levels.
"Ribavirin increases SVR rates by an as yet unidentified mechanism. Ribavirin does not enhance the first or second viral elimination phases; however, a third elimination phase became apparent in some patients treated with peginterferon alfa-2a and ribavirin, but not in those treated with peginterferon alfa-2a alone.28 The slope of this phase was correlated with SVR rates, a phenomenon interpreted to represent enhanced degradation of infected cells."
http://jac.oxfordjournals.org/cgi/content/full/53/1/15

Of course your being on a treatment drug throws a whole new set of unknowns into any of the models based on soc.

[Proactive]

Best if you are so inclined, to read about viral kinetics. Especially taking note of the viral slope decline phases(there are some good graphs)...this is a good article.
http://www.medigraphic.com/pdfs/hepato/ah-2002/ah022b.pdf

and here are a few more...(this will have to be my last post on this thread, once they get past 50 or so replies, it just ***** the life out of my puter and things come to a crawl(g))
http://jac.oxfordjournals.org/cgi/content/full/53/1/15
http://www3.interscience.wiley.com/journal/118961281/abstract?CRETRY=1&SRETRY=0

[jmjm530]

I've talked a lot about taking the riba with a high-fat meal but that doesn't mean you have to start going crazy about it. frankly, the fat content in the meals you are already eating sound adequate. it's not like you're taking the Riba with a piece of fruit like some have.  As to fiber, the culprit is fiber supplements like bran or Metamucil, and not food containing fiber like oatmeal. That's okay. Also should add that you should not taken antacid within a couple hours of the Riba.

[GreatBird]

VCO?

I looked it up and all I got was "voltage controlled oscillator" which is likely high in metals and low in fat. ;)

[GreatBird]

triphasic viral decline camp ?

[GreatBird]

Your results are inspiring! I'm hoping . . .

Did they tell you anything special to eat with the blue pills? I was told just to eat "food like crackers" which is rather vague as far as I'm concerned. I've been having my blue pills with 1/2 an instant breakfast in the morning, some sort of snack in the afternoon (crackers, whatever), and those little Dannon liquid probiotic goodies (or instant breakfast) at night.

[GreatBird]

I feel so dumb because it never occurred to me I wasn't getting enough fat. I don't eat low fat *anything* and I don't avoid fats. I've always had low or moderate cholesterol.  But I guess I wasn't doing HIGH fat and that was my mistake. Plus, I realized that when I spend time at my daughter's house (which is what I do when I go in for my appointments--I'm there for two days every two weeks) I have a hard time even finding breakfast. And the week I was there for Xmas I likely didn't have enough fats either.

One thing I've been struggling with since the beginning of this is nausea. I had it bad for the first two weeks, then it seemed to go away mostly, and it's been back with a vengeance since I started the blue pills. It doesn't really seem to make a difference that I eat (and I do get hungry), but at the same time it's probably colored my choices.

At any rate, to answer your question GETERDONE, nope--no diarrhea. But to go with this lovely nausea I have the feeling like my intestines have been stripped raw. They are very sore. And--let me just put it this way--I go to the bathroom a lot. I did tell the trial nurse this and she didn't seem to recognize it as a side-effect. It kinda feels like food poisoning, because my stomach also feels raw.

So . . . for breakfast today I'm going to have two eggs, three pieces of bacon, and a piece of toast with butter. (Gah.) That's close to 50 grams of fat:  http://whatscookingamerica.net/NutritionalChart.htm

I could also just drink heavy cream, right? (I actually love doing that. It's one of my guilty pleasures.) I did that to chase down my boceprevir pills this am since someone (ahem) had used all the milk and I couldn't do a 1/2 instant breakfast with them like I've been doing.

I'll drop the veggies at dinner and have them at lunch. It goes against my grain to do that, but veggies *are* fiber and I only have so much room. I'll do my twice baked potatoes a few times a week and supplement with cream and lots of butter on everything.

[virgocharm]

i hope your 6 week result will be the bang. my 6 week had dropped from 13 million to 186. at week 8 i was u n d. boc trial. i am praying that boc is there for you and will have knocked it out.  i was tx naive.

[virgocharm]

why did you drop out of the study?

[Proactive]

PS: I should also mention my hgb #'s and hgb rebound if plotted with my vl results would match up pretty closely with my viral kinetic chart (base vl 2.3M, 4 wk vl 52K, 8wk vl 2400, 13 wk vl of 256, 18 wk undy). From this, I believe I fell into the triphasic viral decline camp..;^) pro

[Proactive]

If you are in a trial, I suspect your dosages will not be changed, after all a trail has to have strict parameters and protocol, you are evaluating the test drug, not ribavirin or peg.
That said, many of us metabolize the drugs differently, hence the advent of individualize treatment..I'll use myself as an example of individualized riba dosing (even though I did 72 week tx course)
baseline hgb (10 months pre tx)--18.1
10/5 baseline hgb  17
10/26 -hgb ----17.2   (day 1 tx) (riba dose 1200 mg @ 175#'s)
11/2    hgb---- 16.6   (wk 1)
11/9    hgb-----16.4
11/16  hgb-----14.9
11/24  hgb-----15.3   (wk 4) (increased riba dose to 1400mg)
11/28  hgb-----16.5  (are you seeing the hgb rebound?)
12/27  hgb-----16.2   (wk 8) (increased riba to 1600mg)
1/25    hgb-----14.7   (wk 13)
2/27    hgb-----14   (wk 18--undectable finally)
3/27    hgb-----14.6
4/24    hgb-----14 (wk 22)
5/22               3.9
6/26               12.9
8/1                12  
9/12              11.2 (week 46 and pretty much stayed there for the remaining 26 weeks)

Point is, like everything else we all have individual tolerances for these drugs

[Emilio44]

I was on a PI trial earlier this year prior to rolling over to SOC due to 1.9 log drop at week 12 I had a starting VL of 4,480,000.  Currently at 47 of 63 weeks (trial 15, SOC 48).  As it turned out I was on PEG 90mg, Riba 1000 and medium PI.  While I do believe that the 1/2 dose of PEG was primary to the trial failure,  I also believe I was underdosing riba and saw some VL rebounding during the 12 weeks, end of trial i was 56,000VL.  I was starting weight of 74kg (not sure conversion), which was 1kg under weight to receive the 1200 riba dose.  Anyway a long story short, I discussed with some on here, looked at my hgb and and week 8 (trial) decided to take matters into my own hands and dose at 1200 riba. Just missed the 2 log but for me it was probably a blessing in disguise as I was able to roll over to SOC.  At baseline SOC hgb was 144 which meant I was overdosing and still maintaining solid RBC.  From basline SOC to week 4, I did 1400 riba, at week 4 I was quantifiably UND but qualifiably detected at 100 - finally UND week 5 and 12 and 24 on SOC.  I still maintain my own riba regime and dose at 1300 riba for 2 days prior to next shot (when the PEG is running low).  My hgb is now 121 which is not too bad considering my riba dosing and currently at a weight of 70kg which should be 1000 riba.  I personally suspect that some people tolerate riba really well, moreover, probably don't absorb at as well as others and I guess I am proof of that.  Getting the riba dose right is so so important and with research and in time I think we will move from a weight based riba dose to dosing according to liver panel results.  Sorry bout the rave. Just wanted to let you know that bad situations can turn good.  Certainly not recommending my regime to anyone but I made a decision at week 8 that I wouldn't die wondering. Emi

[geterdone]

GB,

Never give up hope, the blue bombers just may start a chain reaction, and the next blood test will reflect that. I do have a question for you and that is have you had any gastrointestinal malfunctions after the first week of ribavirin, diarrhea?

Where is the bacon?

  You need more. Forget the normal diet or rational foods for now you need absorption through a higher intake of fat content. Look at your record? Why is it not working in bringing down the VL load? You are at 800mg for your weight and it is still rising. I understand that you are in a trial but it seems that you do not fall in the norm of the trials perimeters for weight based but that of the outer scope so what can you do to help it a long? I ate a very high content of fats during treatment and am somewhat paying the price now but not for long as it is coming back down, slowly but surely it is coming down, one battle for another. As stated else ware here on the forum it's a life-and-death fight so you have to fight by what ever means you have available and if it means bumping up the fat to a higher level for a short time, it is what needs to be done. Shrimp scampi in butter sauce, cheese bread, peanut better by the table spoons (but would hold off on that for the time being) and anything and everything high in fat. I must have eaten ten pigs in the year of treatment and if I should ever see bacon again I will paint lips on it. Cream cheese on beagles and let’s not forget the donuts, omg! donut holes and many, many, many more donuts, strange though, I do not touch a lot of what I use to eat, now. Others will correct but that is my 2 cents. Looks at your fats as Forrest Gump did with the shrimp…

jasper  

[willing]

rebetol = copegus T o F ? I'm afraid we disagree once again.

On one hand, the active ingredient is the same :1-β-D-ribofuranosyl-1H-1,2,4-triazole-3-carboxamide, white crystalline powder, molecular weight 244.2. Called a nucleoside analog 'cause it looks like a nucleoside (a 5 carbon ribose ring with a funky base hanging off C'1 that could pass a cytidine to a viral polymerase not too worried about sweating the details). But.. consider the inactive fillers packed into each 200mg capsule.

Schering goes with microcrystalline cellulose, lactose monohydrate, croscarmellose sodium, and magnesium stearate. Roche opts for pregelatinized starch, microcrystalline cellulose, sodium starch glycolate, cornstarch and magnesium stearate.   So with the Schering product you're getting lots of nasty croscarmellose sodium , but with Roche you get not one but three different types yummy starch.

I wonder if it's too late for me to consider a career in marketing...

[epiphiny]

That's a great list Tippy has compiled!  I'm going to print it out also.  

I am not sure about the oatmeal question as I always have oatmeal for breakfast and I'm UND so far.  However, I always supplement it with fat in the form of VCO and full fat yoghurt.  About 20 mins after eating that I have about 2oz tasty cheese and then I knock back my Riba.

Thanks for telling me about the protocol if you are in the placebo arm.  Says to me that there is still quite a lot of hope for you; if you are getting the real deal with the blue pills it would seem the chances are extremely high that they are gonna kick the viruses ***!  And if you are in the placebo arm you get a second bite at the apple with the real drugs so, again, chances still high.

Most important thing is to get to UND so start eating that fat!!!

Epi xxx

[Tippyclubb]

You can take the pills with a meal or a snack.  I take my pills at 8am so its a snack.  Just make sure when you take them there's lots of fat in the meal or snack.  

Yes, you can have veggies for dinner but include a potato with lots of butter and sour cream.  Put some cheese sauce over the veggies. Plain veggies with fried chicken.  Celery with Philadelphia cream cheese-- 4 tablespoons.  Pasta made with heavy cream sauces.  Slice of pizza, cheeseburgers-etc.

I don't like eating like this--seems like a lot of fat.  

[CoWriter]

"Are you on Copegus or Rebetol? That could be the explanation for your ribavirin dosage. These pills are dosed differently. Rebetol is dosed at 800 mg for those below 145 lbs. Copegus is dosed at 1000 mg for those below 165 lbs. So if you are on Rebetol, your dosing is correct."
----------------------

Roche would never agree to having their product (Pegasys) used with Schering's Rebetol.  If the trial uses Pegasys then they're using Copegus.

Co

[GreatBird]

Thanks for the list. I'll print it out.

That means you aren't taking your pills with your meals? When do you have your meals?

It looks like my breakfasts are okay--although I might go for two eggs from now on.

I'm so confused...

[Tippyclubb]

So we're saying no veggies for dinner? No bread for breakfast? No oatmeal? Aren't they all fibre in some way or other?

Here's a list of some few things I was told to eat with my Riba and Teleprevir.

Ice Cream
Whole Milk yogurt, pudding, or custard
Bagel with 4 Tablespoons cream cheese or 4 teaspoons of butter or  3 Tablespoons of peanut butter
2 ounces cheese and 6 butter type cracker ( Ritz , Club )
2 ounces salami with 6 crackers or bread with 2 tsp butter or mayo
1/2 cup nuts
2 ounces guacamole with one ounce of tortilla chips ( around 10 )
chocolate filled croissant
2 ounces potato chips

They said its really important to eat this way because the meds are absorbed better with the fat and should be eaten within 30 minutes before your pill.