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87972 tn?1322661239

2nd round HCV treatment

Okie-Dokie;

It took me 6 months to get this together, but I've finally got the 2nd round of Tx going again. Here is a brief overview of round 1:

51 year old Caucasian male
Genotype 1a
Grade 2, stage 3/4
254 lbs
Diabetes M. type 2
Dx with HCV 12/04
Treated with Pegasys/ Copegus total 56 weeks, from 2/05 through 3/06.
Slow viral response at 12 week assay, so increased riba from assigned 1200 mg/day to 1800 mg/day.
Became undetectable to <50 IU by week 20.
Relapsed within 30 days post Tx.

I started round 2 on 9/15/06 with Peg-Intron 0.50 mL/150 mcg/week, and ribavirin 2000 mg/day. For the first three injections, I've been drawing up the entire contents of the IFN vial, after reconstituting with 0.70 mL of the supplied diluent. This has given me an extrapolated dosage of 202 mcg Peg-Intron/week, based on a 0.68 mL injection. Although this IFN dosage isn't officially sanctioned by my new doctor, I have an appointment this Tuesday, and I'll disclose at that time. My three-week labs should be available for review by then, and hopefully will show some positive trends; if not, there's always dose reduction... :-).

Subjectively, I feel fine after three injections; no side effects have shown themselves yet, however this is still *way* early in the game. Last treatment, I was good until week 9 or 10 before this cr@p started creeping up on me, so I guess time will tell the story.

It's probably worth mentioning that I've made some changes regarding exercise and diet as well. As a diabetic, it's important that I maintain tight blood glucose control- particularly while on treatment. Over the last six months, I've managed to lose approx. 50 lbs; walking 8 miles daily in the hills here along with removing most processed foods as well as meats (salmon only now!) from my meals has been really helpful. More and more evidence is suggesting that obesity and insulin resistance are both negative prognostic indicators for SVR, so we'll see if this has any effect in the long run.

I don't expect to be posting very actively; however that just might change if these meds begin slowing me down. Until then, I'm trying to stay as active as possible. I think attitude is an effective tool for Sx; during my last treatment, I resigned myself to the fact that I'd get sick from these meds. This time, I'm going to keep going until I get Gumby-Legs and can't walk... In other words, if the side-effects knock the door off the hinges, I guess they're coming in; however, I'm not going to wait around for them.

My very best to all those folks that I recognize from days past, in addition to a whole lot of new ones as well. Keep plugging away at this stuff, and we'll eventually prevail--

Bill
44 Responses
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92903 tn?1309904711
Almost missed you way down here. I'm still returning to normal, whatever that means for me.... Energy still creeping up, memory too. ALT is creeping down, and WBC and Plates may be creeping up. So, all in all, pretty good. Doc still says liver is swollen and firm, too bad he's not my urologist....
Helpful - 0
Avatar universal
"Mike, how is the maintenance dose treating you?"
It's interferon so it's not much fun. I haven't felt much difference between the 90 mcg and 180 mcg but my riba dose is miniscule - 200 mg daily - so anemia isn't an issue and that improves my overall feeling of well-being. In short-it's tolerable.
"What's going on with your VL and LFTs?"
My viral load has never been serum detectable since April 2003. I just had a Quest PCR on 9/25 and it was undetectable. ALT is 40 and AST is 32. They're getting back in line so all is good.
How goes it with you these days?
Mike
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96938 tn?1189799858
Thanks for the thoughts.  I'm optimistic - I learned a lot in round 1. Have the early-on sensitive pcrs lined up, will take 800 mg riba per day for a week before shot 1 (then 1200) and have a few good examples to follow. Going with Pegasys this time in hopes of making weekends a little more livable. Although I'm signed up for 48, a und at 4 (or by 6) will give me some options later on.  Just need the insurance/pharm to let loose on some injectibles.
Took my bs about an hour after 1st meal today was at 226.  Your 100 sounds and looks pretty good.  When I do the reading before eating I'm always saying "c'mon 104" like I was at a craps table in Vegas.
Helpful - 0
92903 tn?1309904711
Welcome back Bill. Sorry your return is under these circumstances. Sounds like you really have your ducks in a row though. Best of luck and godspeed.

And FLguy, you know I'm pulling for you too. Your attitude is going to pull you through this second round, and I'm taking notes for when hardship comes my way.

Mike, how is the maintenance dose treating you? What's going on with your VL and LFTs?

On the glucose subject, my fasting level is just under 100. PCP yawns and thinks I shouldn't give it another thought since it's (marginally) in range. What do you guys think?
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Avatar universal
You said: "My personal feeling is that tight BG control is absolutely necessary for us to achieve success-- Diabetes is a systemic disease and affects the body as a whole-- it's hard to imagine all this healing taking place without at least adequate control." I couldn't agree with you more. I think it is imperative to maintain glucose control throughout life regardless of what other hurdles you have to deal with. I don't know whether you know that I wrecked my motorcycle in May 2005 and was life flighted with serious head trauma and a crushed leg. The first meal I recall was french fries with gravy, macaroni and cheese and stewed tomatoes. I aked the nurse if she was trying to kill me because I was diabetic. She said they'd give me insulin. It was an insufficient dose and after screeming about my glucose for 2 days they reluctantly  allowed me to handle my own glucose controlled and once they saw my glucose was well controlled they wanted to know how I did it. I begrudgingly told them. The point is that often glucose control gets put on the back burner when other problems are being addressed and I think that's simply wrong and very dangerous too. Mike
Helpful - 0
87972 tn?1322661239
FLGuy;

Thanks for checking back in. Before I forget, I want to wish you all the best on your upcoming re-treatment (not to be confused with retreatment, which I'm sure we've both considered at one point or another!).

Regarding my BG levels during the last Tx, it turns out that I was a walking diabetic disaster. I had two doctors tell me not to worry about monitoring glucose levels with my home test meter. They said that with all that was going on with treatment and my liver responding to Tx, etc, that I'd drive myself crazy "chasing my tail" and ultimately doing more harm than good. "Just let the A1c determine the values and we'll adjust your D.M. meds accordingly. I honestly think that was the worst thing I could have done for myself. My A1c inched up during the course of Tx, reflecting all the cr@p food I was ingesting during that time. My final A1c was at EOT, and came in at 10.5. I immediately began home testing, and sure enough, I had a hard time getting my numbers under 300 mg/dL. Keep in mind that I was taking 2000 mg metformin along with 10 mg glipizide throughout this time. I scheduled an appointment with 'diabetes boot-camp' folks and added Lantus (a long-acting insulin) to my regimen. Long story short, after six months of effort, my glucose is now averaging around 68-70 mg/dL, and I expect a really good A1c next time around-- that is if I can ever get one while I'm not on HCV Tx.

I suspected all along that the HgbA1c test might be skewed due to hemolysis, and then MikeSimon posted a confirming study abstract recently that you mentioned above. If you're interested, this was just released from the Journal of Viral Hepatitis (Sept. '06) that discusses this topic as well. Here's the addy:

http://www.hivandhepatitis.com/hep_c/news/2006/091906_b.html

It says in conclusion "...They recommended that, "A1c levels should not be measured during hepatitis C treatment with interferon plus ribavirin because they do not adequately reflect glycemic control...."

I faxed this article to both of those doctors this morning; we'll see if this changes their thoughts in the future.

My personal feeling is that tight BG control is absolutely necessary for us to achieve success-- Diabetes is a systemic disease and affects the body as a whole-- it's hard to imagine all this healing taking place without at least adequate control.

Again, my best to you, and if you feel like beating this topic around a little more, I'm all ears. Take good care,

Bill
Helpful - 0
96938 tn?1189799858
Thanks for the info.  I'm sitting here with a new script for Lantus, my most recent a1c (not clouded by tx) was 6.8 and represents bs creep.  When one of them is hcv tx, it's difficult to deal with more than one thing at a time.  Well,  back to battle!
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Avatar universal
gee Bill! I think MKAndrew was dealing with the diabetes issue also, check with him at his website?
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Avatar universal
Good Luck Bill! Keep your sights up-light at the end-all that!Frank
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87972 tn?1322661239
Holy Cow!!

I started this post with the thought that a few old-timers might nod and say hello; I didn't expect the whole forum to jump in with all these well wishes. There's too many to thank one by one, so I'll keep it short and offer a collective thank you to all you that responded. This is a way cool place to be to pick up HCV info, as most of you know; if you're just getting started with this disease, stick around and learn-- there's a lot of hard earned knowledge being exchanged in here. Once again, I want to wish all of you nothing but the best of luck in your journeys, and I'll try to keep everyone informed as to my progress.

Take good care, and be well--

Bill
Helpful - 0
131817 tn?1209529311
Thanks for the link. What I wonder is my ultra sound says, fatty liver versus cirrhosis...sounds like it could be either one of those. One of these days I will get my biopsy! Sounds pretty easy to rid oneself of fatty liver. Now about those 10 lbs....

Isn't it great when we feel good enough to be involved in life? I have been feeling pretty good lately. Low energy and fevers but nothing in comparison to some weeks I have had. It is like a miracle when these 'good' weeks happen. I definately am grateful for life when these happen. It's like seeing color again after being in a black and white world.
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Avatar universal
sorry forgot the link LOL

http://www.gicare.com/pated/ecdlv37.htm
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Avatar universal
It's always a pleasure to see your name here. I wish you good luck this time around. Mike
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96938 tn?1189799858
On the subject of glucose and blood sugar levels during tx.  During  tx #1 my bs level (no jokes Goofy) normalized to the point where aic got to 5.8 , endo guy was happy.  Insulin eliminated and I thought it was all due to the absence of virus - bs normalized coincidental to 1st tx und pcr.  I relapsed and over the past 6 month bs and a1c started going up again, even in the presence of a bettter diet.  I though it corresponded with virus being back.  I think it was maybe Mike (?) who pointed out something I didn't realize.  The reduction of bs levels during tx may not have had anything to do with the virus clearing.  The riba killed of the rbc's which the glucose clings to.  As a result, the rbc's never matured with their usual concentration of glucose, which was measured via a1c.  So, the rbc that remained were young and did not get glucose clinging on to the normal extent.  So, in reality the bs never really improved, the testing was shaded by the dying-too-young of the rbc's.  Have you looked into this at all?  How was your bs when you were on tx?  Ever look into this concept or give it any thought?
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Avatar universal
Here is a good explaination of fatty liver and what to do. When ou add viral hepatitis to the mix things can get more complicated as you know. Stopping alcohol, which ou have one and treating the HCV which you are doing are both key to improvement. eating riht and getting enough exercise are the "cures" for it. My doc told me fatty liver is "greatly contributed to" by alcohol. Since we don't drink we have that one covered! I was told I don't have fatty liver but I have enough problems already with my liver, glad I dodged that bullet. I still try to maintain liver friendly eating in the hopes I can stave off fatty liver or other issues.
How are you feeling? Good I hope. I hear it has been chilly up there. I am on my "day after shot day" today which lays me low but I had some pretty good days last week and got some things done around the house so I am grateful. Funny how not being able to do barely anything has made me so grateful for the little things I can do. One positive HCV has given me is a gratefulness for all the blessings I have had in my life. It has taught me not to sweat the small stuff in a real way. It has also taught me to not be so hard on myself, a lesson I was due to learn!
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Avatar universal
Hey bill I remember you!

I'm sorry you are back to doing this again - but this time those stupid little buggers have to be so SCARED they'll go jumping out of your body in no time!

Debby
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131817 tn?1209529311
Hey girl! Sounds like we both had platelet jumps this week. Good news huh? Mine is the same as yours this week, another coincidence? LOL I am sure hoping it is because my liver is getting better. How are you doing?

I have about 10-15 lbs I could lose. I wish the lose weight sx had hit me, but it didn't. I gained a few lbs (4-5) drinking all that Kerns and eating ice cream and cake, so I have cut those out. Just don't buy them! As I was feeding my cravings for food on tx, I watched John gain weight over several weeks. He is more than 50 lbs overweight, so it helped me to stop b/c I knew it would help him too. So back to the plain water, no ice cream or cake and I can feel the tummy slimming down. I wonder how much overweight is bad for fatty liver or tx? Before tx, my dr. told me to lose 10 lbs and a low fat diet for fatty liver. This was before I decided on tx.
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Avatar universal
Welcome aboard! Glad you could join us for the ride LOL
I did the same thing as you using the whole vial on shot day. I also did an additional shot mid week for the first month, sort of my own brand of induction therapy. I wasn't as brave as you with the Riba (plus I couldn't get my hands on enough to do 2000/day or I would have!)I did 1600 for the first 6 months and that kicked my arse. I was UND by week 4 so it was worth it. I lowered the Riba to 1200 after that. Still UND so far. Hope you have minimal or NO sides! I guess if we don't see you that will be a sign of good news!

I have been so pleased because my platelets went up to `137 and I was told they might not ever go up again so I take that as a very good sign!

I was reading today about how using two interferons can really bring histologic improvement ( a la MKAndrew) and I am going to try to get my doc to give me two when I finish tx if he will go fo r it. Seems to work for many.
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Avatar universal
I just got the calender out yesterday and I started on 2.10.2006, but went undetectible on 7.27.2006, so I am counting 36 weeks past that day....long roe ahead of us, hey?
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Avatar universal
Glad you got the plan lined out.  I am duly impressed - walking 8 miles a day in the hills no less and changing your diet dramatically.  Wow.  I can tell you are determined that this will work this time.  

2000 riba should sure do the trick. If it doesn't I wonder if any amount would.  

Best to you - I will look for your posts.
kathy
Helpful - 0
Avatar universal
I dont mean to take your hopes down or anything but to be honest part of your failure lies in your weight.Treating at that weight is huge factor in your treatment failing the first time.How do i know because i also treated at the same weight as you and failed.i did my research and found out the majority of overweight patients on treatment fail.Retreating now with nothing changing in your current physical condition will show no changes at the end of this treatment but loss of motivation.you must prepare your body for it.Exercise expand the veins,increase heart rate,increase protein to repair the livers damage from the virus,and remove the fat from the midsection so the pegasys can circulate.You will notice at that weight as i did the interferon almost seems non existent cause the weight is so high.its trapped in the fat.

I am preparing for my next treatment but not till i get my weight down.I am now at 210 from 250 and will retreat at 190.I would prefer to be at 180 but i dont think at my current weight loss i would hit that for quite a while.

I have cirrosis and have been working out 4 months now and have lost 40 pounds.Working out mon,wed,fri with weights and 10 minutes of cardio at end of weight training.If i have the energy i do cardio for 30 minutes on tues and thurs.Low impact since my joints hurt me alot from being overweight for so many years.I eat 4 small meals a day.

I eat 4 egg whites and one whole egg in morning with ketchep mixed with 1/3 cup oatmeal.
Then to gym.
After gym banana 1 teaspoon peanut butter,and chicken or oatmeal again.and yes it tastes horrible,but i want to succed at treatment this time.
supper my wife makes roast beef,more chicken,or steak.
For my last meal i eat yogurt 1 more teaspoon peanut butter and almonds or pecans,or my fav snack grape tomatoes.

I have one junk day a week on sundays i eat ice cream,cookies whatever i want to relieve my cravings then back on track from mon to sat dedicated.

I am keeping a photo journel of my changes i will post it once my goals are achieved once a month i take front and side photos of myself.I have noticed since i have been working out i have required my sleep for my liver to repair and keep with the virus.i try for 10 hours a night.

anyways if you decide to go for it now good luck.But i suggest taking 30 pounds or more of fat away first.Then you can be confident things have changed this time for success.
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Avatar universal
just noticed my bad you mentioned you have already lost 50 pounds you are right on track.awsome i see success in your future with this treatment.
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86075 tn?1238115091
wishing you the best of luck, get em going this time...
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96938 tn?1189799858
Good luck Bill. Kill 'em deader this time.  I'll start again too in a couple of weeks.
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