One down, 47 to go!!

[PasoPerson]

Finally, three months after being diagnosed, treatment began yesterday.  I'm on Peg-Inferon and Copegus ... yes, one from each company, thanks to my insurance company.  

As of June 1, 2005 my VL was 14,400,000 - doctor says we will go with that number for a 2 log drop.  I have problems with that and am waiting for a call back from her.  In one week's time it went from 8,980,000 to 14,400,000.  Three months ago.  What if it's about 100,000,000 now, but rather than having to come down to 1,000,000, I have to come down to 144,000?  IS THIS A VALID CONCERN??  

I am a 60 year old female, Hep C, 1a, and I'm looking forward to being in the 19% who clear this in 48 weeks!

Only had mild sides yesterday, flu-like is all.  Better today.  I sure hope this is a sign of things to come.

God bless -
Carolyn

[jmjm530]

The viral load issue is a mute point now since you already started treatment.

Youhave to pick the most recent number and go with it which is your  July 1st result.  No way to know what it was the day before treatment unless you drew blood that day.

Your point about fluctuations is valid, but I wouldn't be too concerned because most people don't do viral loads the day before tx.

BTW what's with this 19%? I'd say average cure rates for geno 1's are closer to 40-45% depending on various factors. And if you clear  the virus by week 12, your odds shoot up. Even you clear by week 4, they can be as high as 80%.

Do you know your level of fibrosis usually expressed as a "stage" on your biopsy report? If it's stage 3 or 4, you might consider extended treatment (longer then 48 weeks) especially if you don't have a two-log drop by week 12.

Two bits of advice. See if you can get your doctor to take a week #4 viral load test. Best to have a PCR with a sensitiviy of 50 or below. Also, you want weekly CBC's in the beginning. If your hemoglobin drops too fast you should ask for Procrit. Don't let the doctor reduce your riba dose. This is a good time to have that discussion if you haven't already. Dose reduction during the first 12 weeks is probably the biggest factor to reducing you chance of SVR.

Good luck with tx and happy your sides weren't too bad.

-- Jim

[HepCinLA]

Congratulations on beginning your treatment!  I was supposed to start a few weeks ago but there's been a hold up at the lab.

Anyway, glad to hear that your sides have been mild.  I am very anxious to begin treatment and worry about the sides.  Your post gave me some hope!

[virtualsuzyq]

Hooray, first one done!  I did my first one day before yessterday and, like you, am having very few sx.  We are lucky so far!

Susan

[nyhepc]

i don't believe this!!!!!  nurse just called and doc wants to pull me off meds again. wbc went from 14.6 to 1.8, anc 768 to 414 after 1 peg 135 mcq injection. my question is this...can i take more than one neupogen a week?  has anbody not been able to finish tx because of the anemia....i can't get past week 5, then week 1.
sorry to butt in on a thread, but this is so upsetting. i did put up a protest and waiting for doc to call me back. i'm trying here....

[hiya24]

Congrats....you must be extremely relieved to be on your way, I know I was. It's also good that you are feeling good. Take each day one at a time and the weeks will go by quicker than you expect.

Regarding the SVR stats you mentioned, I think Jim is correct that your odds may be better than you think. I have always thought that it was 40-50% for type 1s and this gets better or worse depending on when you clear the virus.

Hope all goes well.

[Tonyz]

Adding soy to your diet may be the key to keeping liver cancer at bay, says an international team of scientists who studied the effect of this soybean-derived substance in a group of Japanese people at risk for the disease.1

The most common form of liver cancer is known as hepatocellular carcinoma, accounting for over 5% of all human cancers, and is ranked as the fifth most common cancer around the world. In the Western hemisphere, infection with hepatitis C is the leading cause of hepatocellular carcinoma, particularly in people with liver cirrhosis. Only about 30 to 40 percent of those with this type of cancer respond to radical treatment, say estimates, such as surgical removal, liver transplant, or percutaneous ablation—an approach in which a form of alcohol is injected directly into the liver tumor.2

Does What You Eat Affect Your Cancer Odds?
The researchers led by Gerald Sharp, DrPH, of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, collected data on more than 700 Japanese survivors of the atomic bomb attacks at the end of World War II to find out if consuming soy-based foods reduces the liver cancer risk.

This group is part of a larger cohort that has been studied extensively for more than 50 years; specifically, the rates of various cancers that have arisen during this time, Sharp and his colleagues in Washington, DC, Hiroshima, Japan, and Oxford, England reported.

For their study, Sharp's group used only information that had been collected on people at least two years before liver cancer diagnosis or death. They divided the patient data by those diagnosed with liver cancer between 1965 and 1988, and those without liver cancer—included as a comparison.  Data were then collected on the incidence of hepatitis B and C among the study participants, as well as their types of diets, based on questionnaires that they had previously completed. The researchers focused specifically on the amount of tofu and miso soup consumed by the study population. Miso is a type of paste made from fermented soybeans, and tofu is a type of food made from curdled soy milk. Information on alcohol and smoking habits was also gathered.

There were no differences between both groups in terms of age, sex, city of residence at the time of the bombing, or radiation exposure. However, there was about a 50% difference in the risk of hepatocellular carcinoma between those who had consumed higher levels of tofu and miso soup and those who ate lower levels. The investigators found that those who had not been diagnosed with liver cancer had consumed about at least five servings of miso soup and tofu per week, on average. This was the result after taking the risk of hepatocellular carcinoma from hepatitis B or C infection, and smoking and alcohol consumption into account.

The risk of liver cancer was higher in women than in men in this study, particularly for women diagnosed with hepatitis C. "Although HCV infection rates among controls [those without cancer] in our study were similar for both sexes, 78 percent of female cases were HCV-infected compared to 37 percent of male cases, thereby increasing [the risk] of hepatocellular carcinoma for HCV among females," wrote the researchers.

Why May Eating Soy Work?
In conclusion, soy-based foods reduced the risk of hepatocellular carcinoma in this study population, claim the researchers. While it's not exactly known why, "epidemiologic studies have found that increased exposure to estrogen is significantly associated with elevated hepatocellular carcinoma risk among women and that isoflavones may reduce estrogen levels," they maintained.  (Isoflavones are phytoestrogens—estrogen-like compounds—found in soybeans.)

But since previous studies suggest that other estrogen antagonists (i.e., the breast cancer drug, tamoxifen) have no therapeutic value against hepatocellular carcinoma,3 it may be possible that isoflavones have some other anti-tumor effect, the investigators speculated.

Isoflavones may also inhibit levels of testosterone in the body. Higher levels of this hormone have been linked to an increased risk of hepatocellular carcinoma, they explained

[Andy Capp]

Hey Carolyn,

Great news that you've begun treatment.

Don't be too worried about the pre-treatment numbers; they're a baseline to compare against.

Hey, I'm a few months shy of 60 and an genotype 1a too.  My viral load dropped two log by week four and was undetectable by week 12.  My pre-treatment biopsy showed that I was grade three, stage three.  I'm about to start week 27/48.  

The probability of SVR for genotype 1a on 48 week treatment is just under 50% so get that 19% out of your Head ;-D.

You can clear the virus;
1. drink lots of water,
2. exercise daily,
3. eat a healthful diet,
4. get lots of sleep.  

Good luck...be positive about the outcome.

Andy Capp

[jmjm530]

I can feel your frustration! What a raw deal!

Don't know about neupogen dosing but it's supposed to work fast.

As to "has anybody not been able to finish tx because of the anemia"... do you mean "anemia" or "neutropenia" ?

Anemia is low hemoglobin. Neutropenia is low white blood cell count.

My impression is that people don't commonly get yanked because of neutropenia but that's just an impression.

Anemia, yes. People get yanked all the time, usually because there docs didn't prescribe Procrit in time.

Couldn't make out what your hemoglobin was? Do you have your pre-tx and current numbers and how long have you been on Procrit?

Maybe someone else can help with the Neupogen questions, but if you're not getting real solid feedback from your doctor on this, you might want to get re-evaluated by another specialist. Not every doctor is comfortable playing around with Neupogen and Procrit. Too bad, because that's what keeps a lot of us on treatment.

Also, forgot your profile: genotype? stage of liver disease, etc..

Let us know what happens.

-- Jim

[HepCat]

Well hopefully you will be undetectable and need not be concerned about 2 log drops.  Good luck with your treatment and hope the sides go mild for you.

[friole]

Lot of stuff in here so thought I would add my news.

But first on the thread

Paso  -- at last!  So glad you are joining us at last.  I will do #7 tonight ( and got dx about the same time you did). Mild sides - great!

Suzyq -- Mild sides for you so far too -- great.  Makes you know you can go on.  (much better than the pre-shot anxiety)

nyhepc -- Sounds like you need to just take a break.  You have that appointment with Rearfang's doc in Oct.  Make sure you get copies of EVERYTHING to take.
Like Jim, I am confused on the anemia/neutopenia.  Actually, I think you have both, but was you HGB at 14.6 and your WBC at 1.8 this time? Seems like your hgb was at 9.
It will all work out.  

NOW, MY NEWS,   ta da.....................
     2 LOG DROP at week 4.

   The test was LabCorp NGI HCV SuperQuant with sensativity (if I am reading this right) to 100 copies/mL which would translate to about 40 IU/ml.

My reading was 5,800 copies/ml;   2,320 IU/ml.

I am 1a with a beginning VL of 1.52million.  Boy am I happy.
Kathy

[nyhepc]

stats:  2b stage1/grade2  vl 4,700,000 did peg 180, copeg 1000 for 5.5 wks. when i got pulled off tx hgb was 9.8, hct 28.1, wbc 1.8, anc 768. off tx 3 wks with 2 shots of neupogen.... hgb 11.5,hct 35.1, wbc 14.8, anc 10000+. restarted with peg 135, copeg 800 on monday. in 4 days...hgb 11, hct 33.1, wbc 1.8, anc 414. no procrit. nurse called back..said to take neupogen on sunday and they would contact me on monday about further bloodwork and the next step...do not take more peg until i talk to them.
have appt with new doc 10/3
but maybe this tx just isn't possible for me, and because of stage/grade, i do have some wiggle room. but i was so psyched to do this. it's almost a disappointment. funny, how can something that is being so difficult be a disappointment if i can't do it?
chin up...will have to wait and see what monday brings.

[nyhepc]

your good news was what i needed to hear. i gather stength from the good news of others. am so glad this is working for you...keep at it

[PasoPerson]

Thanks for all your positive and helpful comments.  I have been reading this board for 3 months, contributed very little in all that time.  But I took away a lot of valuable info.

Same as this time ... I will insist on VL @ week 4, for sure - BIG THANKS ON THAT.

Answer to question asked re: biopsy findings:  
Modified Knodell Score (HAI grade)was Grade 5 (mild)
Fibrosis was Stage 5 out of 6 (incomplete cirrhosis)
Statosis 10% (no inflamation (inflammation))  

Answer to where I got the 19% change of SVR:  I believe I reaad it on janis7.  My age and Grade/Stage were factors "lowering my chances" to 19%.  However, they do not account for two important things - I am a stubborn cuss AND God is with me every step of the way, with many prayer warriors adding to my prayers.  

TonyZ - thanks for the soy comments.  However, I have to say while I enjoy tofu in Hot & Sour Soup, I don't know what miso is.  And my chances of eating either are slim as I don't frequent restaurants.  But I thank you for informing me anyway.

Once again, thanks everyone.  God bless -
Carolyn

[PasoPerson]

NY - Will be praying for a better outcome for you.  I agree that maybe you need a break for now until you see that doctor in October.

HepCat - I'm with you, praying it won't matter because week 4 will be undectable!

Friole - Thanks for your well wishes; we are one right behind the other.  Positive is good.  Thanks, again.

[BronxRican007]

Congrats,
Looks like we started a day apart! I take my first shot of infergen tonight! Took my Riba for the first this morning and felt like I was racing through life by 10am. Anyone feel super hyper from Riba? I didn't do a biopsy because: 1) I want my body free of this monster regardless of the outcome of a biopsy 2)The health status of my liver more important (to me) once the treatment is over. I'm in my late 40s, in decent shape, male, but I have had some HCV related skin problems. I don't have any idea when I was infected or for how long...maybe I basic training almost 30 yrs ago. I'm a 1b, VL 579K. I was diagnosed in Feb 05 told in Apr 05 and finally being treated begining tonight. Good luck to you as we go down this path together.
Take Care!
Bronxrican007

[jmjm530]

Congratulations on getting started!

I raced from the riba in the beginning but it changes a bit as it mixes with the Peg shots. It also changes over time and everyone's ride is different.

What kind of skin problems have you had? Treatment often brings out the worst in pre-existing skin conditions unless you have something that the interferon actually helps -- which can happen. In my case, I've had bad flares of psoriasis and other stuff. Have a good dermatologist in your back pocket who understands Hep C treatment and get on things fast if they start to develop.

As a big stong guy, the thing you want to keep a sharp eye out your hemoglobin level. Ideally, it should be checked weekly for the first 12-weeks of treatment. A sharp drop (over two points in a few weeks) can signal anemia regardless of the actual number.

Anemia hits fast. In my case, I was running on the treadmill one day and lying in the ER ten days later. If you start to feel any symptons -- dizzy when getting up, headaches, extreme fatigue, exercise intolerance -- check that hemoglobin and insist on Procrit right away. More people get yanked off treatment for anemia than anything else.

Another suggestion is to get a week #4 PCR (viral load test). This will help your doctors know how you're reacting to the drugs. You want to see a minimum 90% drop in viral load each month, and by week 12, you want to have at least a two-log (decimal point) drop from pre-treatment. If not, your doctors may want to adjust dosage and/or change pegs and/or change treatment length.

Lastly, how much riba are you taking? As a 1b, you should be on at least 1200 mg/day. Some doctors prescribe even more if you're over 200 lbs. The shots knock the virus down. The riba keeps it down for good. :) Also, try and take the riba with your two largest meals of the day. Don't worry if they're not 12-hours apart. The more fat in the meal the better as long as you can tolerate it. Studies show that ribavirin is used by the body more efficiently when taken with a high fat meal.

So welcome to the treatment zoo and keep us posted. It never gets boring on tx but you may be one of the lucky ones where it does.

-- Jim

[BronxRican007]

Jim,
I'm doing 1200mg a day...I lost 40lbs in the months before treatment & I'm a little over 200 but the doc feels my bodyfat is in line with a person of lighter weight. Funny you sould write about riba with meals...my wife asked if I wanted the riba now and I said no because I already ate and would eat again after hitting the gym but thanks to your advise I'll take them now...I ate about an 1 1/2 hours ago.
Thanks
br007

[jmjm530]

Pasoperson has a point. You seem to be going through an awful lot with a medical team that has a questionable approach. If they take you off the peg's, your chances of SVR really drop.

Because you're a stage 1, you have more than wiggle room. You can do cartwheels if you want for quite some time. :)

I understand your desire to knock this thing down, especially since you're a geno 2. But I think you'll have a much better chance with the right medical team.

As has been suggested, make sure you collect ALL your medical records/blood tests and get them organized as best you can. Then do a "scenario" breakdown of each time you're on treatment, including dosage, blood work, etc.

And, if you do switch, make sure you have a lot of confidence that the new medical team will do what it takes to keep you on treatment. If not, take a deep breath, and interview another doctor. You're in no rush. Meanwhile, build your body up. You've been through a lot and the stronger you are at the get-go the better.

I have a feeling you're gonna do just fine.

-- Jim

[jmjm530]

1200 should be fine, as body fat ratio is important. I take my riba at the end of the two biggest meals. (Actually I only eat two meals a day so it's kinda easy. :) But since I don't have a regular schedule, that means some days I take the riba at 10am and 8PM. And other days, I've taken it at 12PM and 3PM. Usually something inbetween.

The reason the timing doesn't matter is because riba has over a 100 hour half life. The trick is to keep feeding it efficently into the system each day. My doc actually told me I could take all the riba at once but I do try and separate doses by at least 4 hours when possible.

Glad you've got such a postive attitude. Working out is good, helps with the side effects,  but don't kill yourself if you start feeling a little tired from tx. And, of course, drink lots of water -- like half your weight in ounces each day.

-- Jim

[jmjm530]

Great news Kathy ! If my mind is still working, that's almost a THREE POINT drop. Great! When is your next PCR? I wouldn't wait for week 12. My guess is you'll go undetectible by week 8.

-- Jim

[rearfang]

I think I may have left out a newcomer here, if so, I mean you too! Best of luck to you all. I just did #16 today, and it's been very doable for me....nyHepC... I feel so bad for you, Lorrie. I really hope you can work this out. Being a 2 you've got such a good shot at SVR, if only you can stay on tx. Do you have an appt at Albany Gastro? Let me know if I can help in any way. Friole-great news on the early response!
Lauren

[cuteus]

kathy, that is more than a 2 log! good job!
that bug is getting a whipping and probably packed up and ready to leave!

NYhepc, this medical team is not for you, wait for the next one, I went through 3, almost 4. Everything has to be right to win this war. You will beat this thing by next summer, it will be over and you will be free at last.
paso and others starting, gl, most of the sides come after riba has settled in your blood, until then, enjoy!

[avidreader]

Woot! Woot!

Terrific News.

I'm right behind you and waiting for my labs. Let's hope I'm a copycat! I'm happy for you Kathy.

Tracy

[genedog]

you will be done before you know it

[ASmile4U]

I will start tx with Infergen in just a few  weeks.  I'm curious as to whether you are doing daily shots or 3/week.  Jim sent me to a couple of sites with interesting info. Just trying to gather as much info as I can before returning to the doc.  He will only tx me with 3/week unless I can provide studies that show daily has a significantly higher SVR.  :)

[nyhepc]

how come it's up to us to do the legwork about these studies???why aren't these docs looking them up?? granted, they may not know it's out there, but once we tell them it is, seems their role should kick in. it's like me telling my pts "i can't take of you today, you do it and call me when you're done".  i'd be fired on the spot

[ASmile4U]

You're right...I could just see me telling my pts the same thing. By the way he said it, I believe he doesn't think I'll find anything with significant differences that pertain to my situation...being a non-responder, female, age, VL...from what I've learned from southernboy, starting out with a lower dose and increasing as tx continues is a good approach.  So, if I can't convince him now, perhaps if my VL doesn't change much early on...maybe then.  Unsure of what my VL is, it was 44,000 at week 12, I continued tx until 16 weeks and have now been off for 7...Should find out end of next week what current VL is.  I'm very curious.  Hopeful it is very low to start out with.  :)

[doll face]

Ny- Yes you can take extra Neupogen. I did 2 shots a week, every week for most of my second round of tx.

Sorry I don't have time to comment to everyone,,, but to all the people here that are just starting ... Good luck. It will be a bumpy ride for some, just remember that you are not alone. You can always come back here and get the support you need to get through.

[rifleman]

Haven't seen you here for awhile. Good luck with the tx.
DJL

[cquest]

I know what you mean about doing all the work on research!

However, I somewhat understand how it happens that they don't know as much as we might about current studies, etc. Part of it is, they simply don't have the time, believe me, I work with them and this one poor Neurologist I see eat lunch every day in literally 2 minutes! He gobbles it down and runs off...I said something to him yesterday and he said 'years of practice,hon! it's an art! don't try this at home!' and scurried off...minutes later he was on the floor, I heard him shouting to a patient 'can you feel this!!!? does it hurt to lift your leg!!!?' the patient was deaf, the whole floor could hear him, other people starting lifting their legs and saying 'no, it doesn't hurt!'...pretty funny.

I would not want to be a doctor for all the money in the world, they have office patients, then they have hospital patient's for daily visits and charting, then they have to do dictation,surgery operative reports, then they have to sign the charts (they always forget), order tests, review tests, then they get called at home and have to go to the hospital at all hours of the day or night, some specialists are on call at the ER and have to make life and death decisions over the phone...plus the malpractice if they forget something or God forbid leave a sponge in somebody...then they have a family and all that goes along with that...

I can understand how they don't get around to all the stuff we want them to and I think we can enlighten them if necessary. They can't fault us for being interested in our own medical care. It's a two way relationship I think...I personally hate waiting around and feel like if I say jump they should ask how high...but I see both sides of it good or bad...Plus they are the MOST dysfunctional bunch of people I have ever known! Some of the worst situations at home, one lady doc married to doc had a very public affair with the valet at the hospital! how humiliating for her husband, trade a doctor for a valet and not care who knows it? that's a statement...one poor Indian doc was married to a blond lady that treated him like sh*t, his kids hated him, he was stuck with her because she would take him to the cleaners if he divorced her, we taught him how to say 'don't let the screen door hit you on the way out!' poor thing.
Cin

[cuteus]

that is the main reason most don't know the latest stuff, time. But if you do not have time and your patients do and find the studies, don't shrug them off and act arroagant and allmighty, learn from them. A good doctor is the one who admits he does not know everything and is willing to look things up or listen to their patients.
thanks for giving insight to the other side of the story. Most probably don't know.

[cquest]

Yes, arogance must come with the medical degree! They really do have brass ones...Recently it came out that the CEO of the hospital made a certain amount of $...lots and lots of $...the doctors were FURIOUS at that! They felt that after 8 years of schooling, hundreds and thousands of dollars worth of malpractice insurance and all the stress, they should not be upstaged by a mere CEO. They wrote letters to the board of directors, stomped around and made threats...didn't do them any good. They are so rude to underlings too...I found that out when I was in the medical records dept for a few months...one doc called up screaming and says 'why is it I have to ask you people for bla bla over and over and you never do it???!!! you are totally incompetant!!!' I asked what the medical record number was and he gave me some weird number...I was confused and he says 'this is Kingston Hospital, right?' I said 'no, Bene'...he was so embarrassed he hung up on me! At least I know which docs are a**holes and can avoid them if anybody tries to send me to them. Ha! Think they're so smart!
Cin

[nyhepc]

i know the docs are busy...but what about their patients who can't advocate for themselves. those people have their lives entrusted to someone who is overtired,overworked, overstressed.
we all should be thankful we are able to gather info here, or amywhere, and look out for ourselves.

[MajNeni]

I also had Neupogen 300 mcg. 2x/wk. for much of my 48-week tx.  
(BTW, Neupogen should be taken 2 days away from your interferon shot.)  That said, it acts very fast.  I went from the boonies, like your low WBC/ANC counts, to around 14,000 a day or so after the shot; and within a few days, back down into the cellar.  Neupogen is fast acting, but also leaves fairly fast.
I was also on Procrit, 2x/wk. for much of the time.  (I took both of them 1x/wk. for most of rest of my tx time.)
My doc said that studies show that a low WBC/ANC induced by TX interferon does not correlate with more opportunistic infections; ordinarily, low WBC/ANC would do that, but tx does not increase our risk.  Further, the neutropenia (low WBC/ANC) caused by tx is very quickly reversible.  This would be a poor reason to yank you off tx.
In any case, it is very important to feel confident in your doctor, and switching to the Albany group would be a good thing.  If at all possible, I'd try to avoid interrupting tx again; it gives the strongest bugs, the ones that may have survived so far, an opportunity to regroup.  

I got yanked off tx 2x by a doctor who was not quite on top of HepC tx; washed out for 6 months, and started with a more experienced-with-hepC doc.  I'm a former Genotype 1b/S.1/G.2 starting with a quite high VL... I am SVR, about 19 months out.  As far as I'm concerned, I am cured, life goes on.
MN

[scruffy]

You will be through this in a blink Paso.Treat yourself well and gentle.Tx is a great excuse if you need one. frank

[nyhepc]

thanks for kind words, encouragement, advice. now that i know dollface and majneni took neupogen twice weekly, i am formulating a game plan for mondays phonecall from doc. ideally, he will say "great idea!" if he insists on stopping me...will just give up for september and see new doc 10/3. this on,off, on,off is senseless...will take me 5 yrs to do 24 weeks!!!!!  lol     warm wishes to all

[relentless]

Fantastic...I did my last of 48 14 months ago and it feels like a lifetime ago. You will be done before you know it. Turn life down a notch or two while your on tx, eat right, drink gallons of water, quit coffee, drink tea, do yoga, keep a journal every shot night and rest. All that and don't miss a shot or pill and you have as good a shot as anyone. I was clear i year after end of tx. Good luck.

relentless