Yesterday I got some more bad news from my doc and I don't know what I should do next, so I'm hoping you guys can give me some advice. I'm on week 24/48 and since week 2 I've had problems with my ANC levels. After my first shot my ANC dropped to 200 (from 2000 before tx), so my peg dose was lowered to 135ml (I was on a reduced dose for 20weeks until my ANC levels stabilized with Neupogen). My doc put me on neupogen and my ANC increased to 1200 so last week he put me back on the full dose of pegasys (180ml). After one shot of pegasys at 180ml my ANC went from 1200 to 300. Now my doc wants to put me on Neupogen twice a week, and I wanted to know if anyone gets two injections of Neupogen a week? Also should I just let the doc decrease the dose back to 135ml and stay on the one dose of Neupogen, or should I try and stay on the full dose with the two shots a week? I'm really scared because I don't want to keep putting more meds in my body, but I don't know what to do. Also to make matters worst, I'm also on 40,000 Procrit and although my Hemoglobin levels were steady at 10 but they are starting to drop. My doc wants to add another 20,000 of Procrit, which would mean another shot and more meds (when it rains it pours). I'm starting to get really fed up with the whole tx and I really don't know what I should do (keep going or just quit). If anyone could offer any advice I would really appreciate it.
GENO: TYPE 1A
VIRAL LOAD PRIOR TO TX: 208,000
WK 11 <10ML
STAGE 0, GRADE 0
WEIGHT: 130 POUNDS
PEG: 180ML (FOR NOW), RIBA 1000MG
HAD VIRUS FOR 7 YEARS
you're half way thru...already taking the procrit and neupogen...i'd continue. i also have ANC problems, taking half doses of neupogen twice weekly but only getting peg 90. will go up to 135 next week and increase the neupogen as needed. you've gotten this far, try to stick it out, think of the outcome!
You poor thing, I really feel bad for you...If it were me, and I am only speaking on my own behalf, I am in no way advising you what to do, I would throw every single one of those poisons in the hopper and flush!!!
I recently found out I am grade 1 and stage 1 and I am not going to go the tx route with the current meds available...You don't even have liver damage...Something to think about...
Hi Brooke, I dunno what I'd do. It's a tough spot - if you weren't this far into it, I'd go with Veggie's suggestion for sure. I just don't know.
When I started the Nueg, a few days later CBC showed no benefit. The nurse (well qualified, IMO) said not prob, you're holding so we'll just increase the Neup to 2x weekly. Thankfully, she called right back and had been looking at the wrong chart. So, my only offering is that twice weekly Neup didn't phase her.
The other thing I thought was I never understood why peg-intron was weight based and pegasys was not. But at 130, it would stand to reason that you're getting a higher dose of peg than I would at 165 lbs. Food for thought.
Also, look at some of the studies for early termination of tx. Maybe you can get to the point where you stand a reasonable shot at SVR, then walk away? Maybe you're there now?
Best wishes in figuring out what you want to do. I feel for you.
I feel for you. Don't really know the ANC/Neupogen protocol's at all. In my case my ANC keeps bouncing from 400 to 1000 but your ANC seems a lot more sensitive to the Peg's than mine. My guess is given your weight and early viral response you're probably OK with the peg reduction but who knows. As for as hemoglobin and Procrit I'm having the same problem. I was stable for most of tx on 40,000 units/wk of Procrit and then my Hgb dropped a couple of points. Now I'm on week 3 of 60,000 units/wk and Hgb doesn't seem to budge.
Don't know the rest of your sides, but it sounds like you're getting a rough ride. Also, I'm personally troubled about what the drugs are doing to my/everyone's body both short and long term. Especially this chronic anemia/brain fog thing so many of us have. Lately, it's been hard thinking and I just can't believe this will be good long term with an oxygen deprieved brain.
Which leads to Veggie's and Goofy's suggestion to call it a day. I'd certainly very seriously consider this option considering your stage 0 liver damage. Many doctors wouldn't even treat you at that level. I wouldn't look at it at giving up but as a strageic retreat to fight another day, when stronger and with better, less harsh drugs which hopefully are only a few years away. In short, stopping treatment now would also be my suggestion, at least to consider very strongly.
The silver lining to all this may be that you may still get SVR even if you stop now. The European short-course study shows 24 weeks gets the same SVR as 48 weeks in a selected population with low pre-tx viral loads who are non-detectible at week 4. I'm assuming you didn't test at week 4 but who knows, our pre-tx viral load is certainly low enough.
This is a tough decision being half-way done but you really have to consider what this is doing to your body now versus the benefits of continuing. If you were a stage 3 or 4, I'm sure all of us would line up as your cheerleading squad, but at this point you really have to consider all your options.
None of us can really get into your skin and that's why tx decisions are so very personal. We're all here to support you whatever you decide. You gotta go with your gut on this.
Hi there, Good luck on what you decide to do. But one thing you won't die from this in a year or two. At your grade and stage you have many more years ahead of you. And if you take care of your liver theres a better chance you'll die of old age then hep-c. Ive had hcv for over 35 years and while im now at stage 4 grade 3 i was a heavy drinker for 20 years which sure didn't help my liver any. im hoping to start tx. soon but even at my stage i still fill pretty good. Being stressed out over this can be worse then the hcv.
From what you've told us I don't see a reason to consider canceling tx. I don't know of any harmful sx from either Procrit or Neupogen so I'd use the dose and frequency he wants.
I had a 4 month rbv reduction for anemia, from wk4 to about wk20. At around wk30 the depression and crazy thinking were getting the better of me. The dr said I could try a Peg-intron reduction without jeopardizing the outcome but I decided to stay at full dose. I got to SVR with 48 weeks of tx.
It sounds like your dr is watching you closely. I think that what separates the good ones from the bad is their willingness to keep trying to keep the sx under control instead of giving up (which is probably what their lawyers would want).
Inf and rbv are mean drugs that kick all of our butts. If you have a dr you trust, do what he wants you to do to manage your blood chemistry. If you get rid of the HCV you'll have a better life. It's a great feeling when it's gone.
GENO: TYPE 1A
VIRAL LOAD PRIOR TO TX: 208,000
WK 11 <10ML
STAGE 0, GRADE 0
WEIGHT: 130 POUNDS
PEG: 180ML (FOR NOW), RIBA 1000MG
HAD VIRUS FOR 7 YEARS
WOW! I totally respect your decision to treat, but based the facts you posted here, I guess I don't understand why. But that is not the issue is it?
Food for Thought;
You have been on the reduced dose of 130 ml of Pegasys for 20 out of 24 weeks of treatment thus far, and you had an EVR for your Genotype @ week 11. If it were me, I would go back to the reduced dose as it has done what the normal dose is supposed to accomplish. I would also request another PCR to confirm the <10iu/ml. You are due for one at this stage of your treatment anyway.
Just My Two Cents
Good Luck in Whatever You Decide.
Thanks you guys. I really needed your advice. Luckily I have an appointment with my doc on Monday and I'm going to discuss all my options with him (continuing with the added meds, lowering the dose, or giving up completly). I'd hate to give up in the middle of tx, but I don't want to drive myself crazy in the mean time. Unfortuately I didn't get a 4 week PCR (I didn't know I should have), so I don't know if I would have been able to qualify for the early disconnection of tx. But, I am definately going to talk with him about my chances of obtaining SVR with shortening (or even quitting) tx. The only thing is that my doc has me scared to wait for treatment with other meds. He said that the other meds might not be better than the current tx, and he doesn't know if, or when they will come available. So that leaves me with the question of what do you do in the mean time. Do you just wait and let the liver get worse or is their anything they can give you to stop damage. Although I didn't have any damage I did have elevated liver enzymes when I started tx(AST/ALP 74 and 63). Although they have stabilized what does that mean? I just have so many questions. I just don't want to stop tx and then this disease kills me in like a year or two. Please help you guys.
Nyhepc: If you don't mind me asking what week, grade, stage and geno are you?
Kalio1: Are you saying that I am on the wrong dose of riba? Should I be at a lower dose? I thought I was on the right dose for my weight, but I sure would love for that to be wrong and to eliminate one or two pills?
v eggie dip: You said that you were going to wait to treat until better tx comes along, correct? If so what are you going to do in the mean time? Did you doc give you anything to slow or prevent any other damage? If so can you let me know what.
Jim: So if I'm correct you've been on the added Procrit and it still isn't helping? If so what are you going to do next if the added Procrit doesn't kick in?
There is more involved to just quiting at this stage. Once a person goes on treatment with the current Pegs/Ribavirin and discontinues, the VIRUS MUTATES. It will also make your viral load increase significantly. Please take this into consideration also when evaluating what course of action you are going to take.
This will have an impact on future treatments if you decide to discontinue.
As stated, hepatitis c is generally a very slow moving disease. I don't know how long you've had it but for me it's 37 years and I'm still a stage 2-3.
Your doctor is taking a very pessimistic view of the newer drugs in trials. 2-3 years is what a lot of us are hearing and the results, while not guaranteed, certainly are promising. Again, you have so much time to wait if you so choose that all cards are in your favor.
As to what I'll do if my hemoglobin keeps dropping, I really will have no choice but to reduce the ribavirin at some point. I don't think going beyond 60,000 U/week of Procrit will make any difference. So far the jump from 40,000 to 60,000 hasn't produced any results.
My NP said "I don't want to alarm you but Interferon can produce kidney damage"...Geee...they never mentioned that BEFORE treatment. LOL. In other words, she's suggesting that my kidney function may be somewhat compromised and that is resulting in a lower hemoglobin. But so far my Creatine is still in the green zone.
To repeat it again, there's a lot about these drugs they just don't tell you going in and a lot they don't know regarding long term effects. I still wonder what being anemic for 48 weeks will do to my brain function long-term. Because I was told my liver damage was 3/4, I really didn't have a choice. Have a good talk with your doctor and ask him what he really knows about the long-term effects of all these drugs we're taking. And keep looking in his eyes.
Although I'm not really behind the short course tx right now. Other than confirming you were clear at week 4, you meet all the critirea. Considering you have no damage or inflamm and all the complications; I'd call it a day. I believe you already have high chances for svr, considering the short course. Good Luck
Actually the Hepatitis C is an RNA virus, which means that it mutates frequently. Once an infection has begun, hepatitis C creates different genetic variations of itself within the body of the person. The mutated forms are frequently different enough from their ancestors that the immune system cannot recognize them. In a recent major breakthrough, three groups have reported the replication of full-length HCV clones in vitro, paving the way for the development of effective antiviral therapies and vaccines. Hopefully this will give all of the Future people who don't even realize they currently have it a better treatment and a vaccine for the ones who don't.
Howdy! I'm a sympathetic oldtimer popping in--ended tx 2 mos. ago. Rather than add my own two cents to the speculation, I'd like to suggest that you also present these questions to a knowledgeable RN at a Delphi forum called "Unity." She's worked with huge numbers of people undergoing hep treatment & truly knows her medical stuff. I say this because ANC management is a very tricky issue and none of here really has sufficient training or experience to advise you well in this area. The very best of luck to you, whatever you decide.
Thanks for the link but there is no mention I could find about treatment (as opposed to not being treated) mutating the virus in such a way to make future treatments more difficult.
I'll also point out that this is a 1998 article and in hep c terms means it could very well be out of date.
The reason I brought this up in the first place is that I've heard what you stated by several posters here and on other boards but never with any collaborative studies. Until I see a study, I'll assume at best it's just another theory about this very elusive and insidious virus.
But moving toward the future, I agree that now we can replicate the virus, the sucker will hopefully be meat in a few years.
Nothing outdated about the the way Hep c Virus Mutates. That has not changed no matter what date on the article. She started out with very low viral load and stopping treatment "if she were to relapse" the viral count will replicate faster than if she had not went on treatment. That will give her many, many more copies of the virus which will mutate. I guess that is what I'm getting at.
Anyway, It's a personal decision and one that would be tough for any of us to be faced with. I'm sure she and her Doctor will make the right choice.
I have seen similar thoughts posted here and on other discussion groups about the virus "mutating" because of treatment, however haven't seen any studies, which doesn't of course mean they don't exist. But I would like to know what are you basing this statement on?
Brooke, I was interested in the earlier discussion, so I did some reading. You may be interested....
"Relapse is defined as an elevation of HCV viral load following initial suppression. If it occurs, it usually does so within several weeks following completion of interferon alfa therapy, with viral load initially rebounding beyond and then returning to the pretreatment level."
Also, remember in the Alessandra Mangia study, 9 of 10 relapsers from a 12 week treatment (genos 2 & 3) achieved SVR by subsequent 24-week treatment. No obvious treatment-enlightened mutations from my point of view. (I gave up trying to find a you a link, but it's out there somewhere - I have it on my hardrive).
I don't offer this as a suggestion of what you should choose to do, just some info that compliments the viewpoints taken above. Best wishes to you.
You are definetely having a harder time on tx than I did and it wears you out. I like to emphasize that hep c is not just a liver disease, it affects other organs, it has been found to replicate in places like the gallbladder, lymph, adrenals, etc. They don't know how this is significant but it reinforces that we should not just think about the liver when referring to hep c. I guess that is why your tx at stage 0 surprises many here, it is because they only see it as a liver disease. I have been wondering about hep c's connection to kidney disease in the absence of cryoglobulinemia. I remember having urinary retention prior to tx and dx and the urologist could not find a problem. I don't have this anymore after tx. Another person's husband died of kidney problems, he had hep c. I wish people would stop referring to hep c as just a liver condition, but as long as they keep doing it, I will keep reminding folks that extra hepatic manifestations have to be considered also.
gl with your appointment today. I would try the boosters for a month and see how they help. Many here have been on both meds early in tx.
Plus, how do we know that the sample taking was truly representative of the whole liver? didn't someone just post having no damage one year and stage 2 in a yr? biopsy mistake? non linear progression? Try to finish, to avoid further organ damage, all of the organs, not just the liver.
Thanks everyone. In a way you guys helped me tremendously and in a way you made my decision soooo much harder. I'm going to take all of the info I've gotten here to my doc today and I'll be sure to keep you guys posted on my decision.
you've had this virus for 7 years and a 0 0, why did he even want you to treat? i read recently that it takes around 15 years in most people to even start doing damage. A great many don't have damage until 25. You have years before this virus would do much, and in the meantime there will be better meds. I can't help thinking continuing with all these meds they are giving you...I dunno, some people have a harder time adapting to them...I'd factor in how great for your system all that can be.
This disease has it's own logic, it's not as fast acting as say cancer or something else. I just think docs are trained to treat disease, it's a knee jerk response...you got something, take this pill and get rid of it. But this disease is more complicated than that...and contrary to what some have said, I believe from all that I've read that extra hepactic manifestations would probably be far more likely in a more advanced case of the disease progression continuum than having had it for 7 years.
The fact that your doc doesn't seem to know butkus about the new meds in the pipeline doesn't inspire much confidence with me at least, even though of course what I think doesn't matter all that much. I don't have a medical degree, neither do most here, and we know more about these upcoming meds than he does? what's wrong with that picture? I don't care if he's busy, youre a real estate broker, you know about your real estate market. Whatever you do, I hope you start feeling better soon and let us know how you go, good luck to you.
Brook, I'm in the same boat you are. ANC is real low & so far Neupogen hasn't helped. I'd like to quit InterfronRiba, but from some of the posts it sounds like my viral load would increase more than when I started.. I feel caught in a trap!
Hope you find the right solution.
hap, the thread is 7~8 years old. It would be interesting to see how it turned out all this time later.
But since you asked and I was in the same boat, I am on Neopogen or G-CSF as the doctor calls it, and found the time of week I took it made a big difference. I was taking interferon on Saturday. Started Neopogen on Thursdays and it had some effect but not a lot. Then went to 2x per week Monday and Thursdays and that boosted it back on up. Went back to 1x per week but on Mondays and it still continued to rise to the point that it's the highest it been even prior to treatment. For me it apparently works better if i take it sooner after the inteferon shot rather than later in the week. Good luck. BTW the side effects were worse on me than interferon but I kinda sorta got a little used to it like everything else.
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