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Low White Blood Court
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Low White Blood Court

My clinic finally called me and told me that the reason I have to skip my IFN injection for just this week was because my WBC was getting low.  I asked if this was going to effect my UND status, and they told me "absolutely not."  My WBC was 4.0 out of a normal range of 3.6 - 10.6.  So, it is getting a bit on the low side, obviously.  I was also told that skipping one dose would probably bring it up.  I've heard so many things, that I just don't know what to think.

What if skipping a dose does not bring it up?  I guess I'll have to go on another medication to bring it up?  I've heard a lot about low HGM and platelets, but not much about WBC.  

I also called a nurse at Roche over the weekend, and she made a bet with me that it was because my medical providers were concerned about my WBC -- she was right.  

Any info about my low WBC at this point would be appreciated.

Thanks,
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WBC should not dictate skipping your shot.  It's the ANC.  ANC is calculated by multiplying the WBC x Neutrophils.  Most doctors won't get concerned until the ANC drops below 500.   4.0 WBC is very good for someone who is treating.

If your doctor is concerned about your whites dropping he should be prepared to start you on Neupogen.  That way, no dose reduction is necessary.  You do not want a dose reduction, especially in the first 12 weeks of treatment.

I don't get your doctors thinking.

Trinity  
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As info, I had INF dose reduction at wks 6 & 7 because of low ANC (didn't even skip an entire shot like you have advised to do) and no Neupogen was ordered until I pitched a fit.  I did not clear the virus at week 12,  did 72 weeks of treatment and subsequently relapsed.  Did that cause my relapse, I'll never know but again I stress you do not want to skip or dose reduce INF at this point in your treatment.

Trinity
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Yeah, I'm with Trin on this...a WBC of 4 is good when on TX.  Mine dropped pretty much immediately to 2.0 and then stayed there the rest of my TX.  Find out what your ANC is (ANC is the neutrophil part of the WBCs).
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Your doc is an idiot.  If the WBC is low and you skip a dose the WBC will go up (while the abated IFN is doing nothing).  Then the WBC goes up and you go back ti IFN.  What comes up will go back down again.  And then what? Stop IFN again.  If that's the scheme why do the treatment at all?

The answer is Neupogen and NO dose reduction.

The guy is better suited as a protologist.
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Agree really what doctor can guarantee that you won't lose UND status when missing a shot? What week are you in now? think of how many people relapse after never ever missing any meds at all! Especially in the first 12 weeks it is CRUCIAL to stay on full dose (unless there is no solution but to this there sure is!)

Neupogen is the answer. Please call them and tell them that you have done research and found this out (but dont say an internet support group or they will think you are CRAZY I found that out the hard way = even though the forum was 100% correct!)
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I emphasize what nygirl said:  Do NOT tell them you got the information from an internet support group.  Docs do not like hearing that and will not take you seriously.
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Here is a link to the standard of care.
http://www.hivandhepatitis.com/hep_c/news/2009/HCVUpdates.pdf

I don't know how much good it will do you though.  I too am having nothing but trouble with my doctor's office.  I had to beg for a four week PCR which I didn't get till five weeks.  And then they just kept forgetting to send the results for that and the next blood tests.  So I made it clear that I also wanted a twelve week PCR and everything was pooh-poohed but I had the impression they were going to humor me.  I went to the office to pick up the order for the test and there wasn't one.  I made it clear that I would wait.  I sited the standard of care and got the order.  But they aren't sending the copies again.  It's too soon for the PCR to be back but CBC should be.  It's scary out here in the hinterlands.  We're not just dealing with a disease and treatment but the ignorance and carelessness of the available medical professionals.  I at least thought that if something didn't look right to me I could post here and if the experienced txers could alert me if something really needed a closer look.  And then I could drive the two hundred miles to bigger medical facilities if necessary.  Now, I have trouble getting the results to post!!!  To this day I haven't seen anything that looks like a thyroid test, though the SOC states that one is necessary before treatment and at twelve weeks.

Well, good luck, I hope they listen to you.  All we can do is hope for the best, that we beat this in spite of confusing care.  I wonder if the WBC concern has anything to do with your COPD?  

Carol
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I dont' get their thinking either -- unless there is something else.  

What in the heck can I do?  I'm in my 6th week of treatment -- my energy level is nothng like it was before treatment.  I don't have the wherewithal to go find another doctor, and I doubt I could.  Doctors are very hesitant in this state to take over other doctor's patients.  It is a very small medical community.

I called Roche and talked to three nurses over the weekend about this -- they all said the same thing, that it was probably low WBC.  They also said not to worry about one skipped IFN treatment -- it isn't as uncommon as people think.  A doctor from the Mayo Clinic said the same thing -- one skipped dosage after achieving UND/RVR would not have any effect on my UND status.  Well, I'll know for sure next week.  Next Monday I have to go get more blood work done, and it takes about 5 days, so I'll know if what about UND next Friday, but if the WBC doesn't come down, I'll just have to follow doctor's orders, because that is all I've got.  

I was so upset over the weekend, that right now, I can't afford it.  

I feel like I've just got to through caution to the wind and hope for the best.

Thanks Trinity for your information.

Debra
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I agree with you -- I was so upset this weekend that I'm surprised I didn't beat up the whole neighborhood and that was the effects of INF.

There isn't anything I can do -- I'm stuck.  It is a small city with a small medical community and all these doctors consult and work together on cases.  They all graduated from the U of U med school and know each other.  it isn't a big metropolitan center where I could go and find another hepatologist.  First, there are only about 5 in Salt Lake City to begin with.  

Guy, I'm also real tired -- this treatment is hard -- I have not been physically sick, thank heavens, but it has been mentally hard and I feel fatigued and in a fog.  I've begun to wonder if I'm even thinking clearly and rationally.  

Sometimes all you can do is put one foot in front of the other and hope for the best.  I've done all I can do.  I debated with the clinic this morning about this dose skipping -- they rebutted and, of couse, they won.  We didn't yell or scream, but I didn't get any where -- and God knows I tried.  I asked about the drug neuopogena (my spelling has gone to the dogs), and they said "not now," it may not be needed.  

So, I'll I can do is just hope for the best, and that is what I'll do.  You can only argue with a doctor so much -- he does have the final say.  You can go get another doctor, but I don't have that luxury.

So, I'll just try and be happy and see the beauty that is in life and the good things there are, and try to just put this issue on the back burner.  

Thanks for your input, I apreciate it.

Debbie
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With a WBC of 4.0 I don't see how your ANC could be low.  If I remember correctly, your platelets are still robust so for the life of me I don't understand your doctor's reasoning.  

Why not call them and ask about Neupogen if that is why they want you to skip a shot.
It doesn't matter who the hell your doctor is, it's your right to ask questions and question their decision.  We've given you accurate information you can dispute your doctors actions with.

You don't have to settle for shabby care just because it's the only doc in the area.  I would be more than glad to document a list of very pointed questions to ask your doctor before you skip that shot.

Trinity


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What a dilemma -- you may have made it.  What a ordeal for you to go through.  I want you to know that I really appreicate you concern for me and this issue.  It is also very impressive that you still get on this forum to help people going through treatment -- you must be one wonderful, generous human being.  

Debbie
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I really appreciate you comments.  My ANC count is 60.8 out of a range of 39-71.  Still within the bounds of normal.  So is the WBC within the bounds of normal -- but it has dropped and quite a bit from the blood tests before treatment.  

Frankly, I'm wondering if there is something else going on -- you know those blood tests show a lot of things -- including certain possible cancers.  That has popped into my mind.  I'm not dwelling on it.  But, as I probably mentioned, I did talk to 3 nurses at Roche about this and they did say the WCB had fallen to low, comparatively speaking.

No, I'll keep mum about this forum.  I know that doctors don't like their patients comparing notes -- it threatens them, when it should.

Hey, I really appreciate your comments.  

Debbie  
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You are absolutely right.  Just because I am UND now, does not mean that I will remain so.  Many people, I'm discoverying, achieve UND, and then later relapse.  I was guarded when I got those results -- they are not a promise -- far from it.  I'm at that point now where I'm just taking it one day at a time -- I have to -- because anything could happen.  I do, however, want to learn all I can.  I am at week 6 -- so, I don't have much under my belt, in any area.  I also have so much to learn, and I'm learning, but as time goes by, I see just how much I have to learn.  It will take time.  

I don't have the knowledge at this point that many of you have -- and I'm becoming acquainted with your names now and the knowledge you possess.  It does seem to me that, after all is said and done, it is still very much a throw of the dice -- you win or lose.  But, if you have a lousy doctor, that could blow it for you.  That is really scary.  But, life isn't perfect, and doctors are far from perfect themselves.  

I'm glad I can come here and talk to all of you about these issues.  Treatment is a real ordeal -- and I've actually had it pretty good, as far as physical effects.  I haven't felt sick at all (except when I ate too much one night before going to bed).  I am fatigued and I do feel that mental fog and I am forgetful.  

It is really nice that there are people like you nygirl here to talk to.  

Debbie
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Hi Deb,

If you can, calculate and post your ANC (WBC's x %Neutrophils = ANC).

It seems to me, also, that an experienced doc would not rush to reduce or temporarily halt your interferon, even though you have the advantage of already being UND.

Here's what Dr. Douglas Dieterich, a renowned hepatologist and our former forum medical expert, had to say about ANC's:

"by Douglas Dieterich, MD, Jul 13, 2008..."

"As long as your ANC stays over .500 you should be OK. We dont worry too much about those numbers. That is really great news about the viral load. Sounds like you didnt get the Ro drug either!. Good luck! DTD"

http://www.medhelp.org/posts/Hepatitis-C/low-wbc-and-neutrophils/show/568719

__________________________________________________________________________

And have a look at this and maybe show it your doc:

http://www.chemocare.com/managing/low_blood_counts.asp#LowWhite

________________________________________________________________________

And this:

"Conclusions:  
During the treatment with pegylated interferons and ribavirin, we did not find a correlation between neutropenia and infections. This result provides a support for the notion that current guidelines for pegylated interferons dose reduction in the treatment of chronic hepatitis C for hematologic toxicity could be overly strict."

http://www.springerlink.com/content/x5nw742316h51126/

____________________________________________________________________


And this:

"Conclusions Bacterial infection during peginterferon-based therapy for CHC was associated with comorbidity of cirrhosis, but not with neutropenia, whether at baseline or during treatment. Neutropenic CHC patients might be treated safely with close monitoring."

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2009.03957.x/abstract

_____________________________________________________________

I agree with Ny and Mea that the less said to your doc about 'subversive' internet forums like this one :), the better it can be for you. :)

Temporarily halting interferon this early in tx can (but not always) have a negative effect on your treatment outcome but it's very tough to negotiate with a doc, I know, if you're wham in the middle of tx.

I'm not sure of the implication of skipping an INF shot when you're ALREADY undetected but as the Mayo doc said, maybe it happens more than I realize. It could be the riba is sufficient to hold your UND for a while but I sure wish someone could link us to studies to back this up.

If only your doc could phone Dr. Dieterich and ask his opinion. :(

If only you could call Dr. Dieterich....

What is your ribavirin dose (mg per kilo) and have you maintained your full ribavirin all this time?  I think Newleaf skipped some of her interferon after getting to undetected BUT maintained her riba and then went on to SVR (and she had cirrhosis).

Have a look at this:

"In contrast, more recent studies have suggested that SVR may not be adversely affected as long as the total cumulative RVN dose remains above 60% or if RVN dosing was not
interrupted. 6-8  Discontinuing RVN even after patients were already HCV RNA undetectable reduced SVR by increasing the percentage of patients who developed breakthrough and relapse.8,9"

http://onlinelibrary.wiley.com/doi/10.1002/hep.21712/pdf


As for your bloodwork, the best day to do your CBC's is as close as possible to, and right before your next shot. That way you may see stronger numbers. And wasn't there a little insider tip that Epi had about running up the stairs before testing to boost some number or other?

Deb, you're responsive to the meds, so that's a heck of a lot you have going for you. Hold tight and we'll help you make this come out right.

Oh, did I mention that none of us here is a doctor but sheesh, what could possibly be the reason to stop or reduce your interferon with a WBC like that? Scratching my head, gal....hang in there and ttyl.


Hugs,
Susan
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Carol, I will look that site up and read about SOC.  

You really nailed it about this disease and the way some doctors approach it.  Hey, I'm not sure I'm in the hinterlands like you, or out in outerspace.  I swear.

That is unforgiveable that you are treated in such a way.  It sounds like your care providers are really not on top of it or they don't seem to understand the seriousness of this treatment and the effects of HCV.  But, it is a sad and cruel fact, that not too many doctors are well educated about treating this condition.  I've got to give you a lot of credit for sticking to your guns and demanding that you get what you need.  We have to be proactive in our health -- because if we don't, no one will.  

I did smoke -- but quit. About a year ago I had the lung function tests, and I did not have COPD at that time, however, even if you quit smoking, COPD can show up at some point.  

Thanks,
Debbie
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" I think Newleaf skipped some of her interferon after getting to undetected BUT maintained her riba and then went on to SVR (and she had cirrhosis)."

Newleaf had a PI to back her up, Deb9991 doesn't.


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Susan:

I copied all that your wrote to me so I can have access to it.  There is a lot to look up and study, and this is valuable information.  

I really appreciate your taking the time to really go into detail about these issues -- you are so well informed and I just can't believe what a wonderful person you are to go into all this detail with me, a total strange.

Thanks so much for you kindess.  All I can say, is that all any of us can do or did, was just hope for the best and get as much information as possible.

But, the point of the matter is, even with all this info, I can't go against what my doctor says.  I had a conversation this morning and I brought up all the points about dose reduction -- I fought for my case, but I lost.  I just can't take IFN this week.

I even thought about taking it any way -- I really did.  In fact, a guy suggested that I should, but I just can't do that.  Maybe if I had a large supply but I don't -- I only have one left -- so I couldn't get away with it.  Also, I don't know this for sure -- but, it has crossed my mind that maybe something else is going on because of the low WBC.  It's probably the IFN, but he could be something else -- doubtful, but the WBC tells a doctor a lot of things about the body.  

Thanks kiddo,
Debbie

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That's a good point that Trinity makes about Newleaf's PI. Newleaf also did an amazingly shortened treatment, so she was clearly hyper-responsive to the meds. For those reasons, she's not a relevant reference point for you.

I can't think of anyone else right now, except myself. I missed my seventh interferon injection due to a mess-up, did not have UND at the time of that missed injection (at least at my four week test), didn't take another injection for a week (stupid me) and went on to SVR, anyway (with UND by week twelve).

So although it's possible to SVR despite a skipped injection and the Mayo Clinic doctor says it's not uncommon, I'd try my best to persuade the doc against this and insist on a study to support his decision. Maybe he has a d-amned good reason but he hasn't shared it with you and that's not right.

You had UND very early in tx - was it at four weeks or six weeks?

xoxo

Susan

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Our letter crossed in the mail!!!

xoxo
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You have COPD too?  I have had it for years and sometimes just walking to my car is difficult. Cold air starts me coughing so much I throw-up(yuk).  I was wondering because my Doc was concerned when I start tx that it could be a problem, any tips would be appreciated on how to deal with COPD exacerbations and tx.

Donna
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I had my first blood test right after taking the 4th injection -- so, it was only 3 weeks.  I was sort of upset taking the blood tests early, but the results were good.  

I don't like skipping the dosage -- but, I'm sort of in a bind.  It is sort of odd that none of my blood tests seem to demand it -- unless my doctor has some strange reason for it.  I got into a debate with this clinic this morning -- but, I lost.  I presented my case as best I could and they presented their.  They were the judge and jury, so I lost.  

So, I'll just hope for the best.

Thanks so much.

Debbie
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Do you have a family history of autoimmune disorders that the doc is aware of?




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absolutely not."

I dont think anyone can say absolutely not considering we have so many relapsers that do not miss (not even reduce) doses however it's so lucky that so many nurses were around on the weekend, I didn't know they did that you really lucked out.
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No, I don't have COPD -- someone mentioned that I might have it because of my low WBC.  However, I did smoke -- I quit and after I quit, I had all the lung function test, and I was normal, however, I was told that if you ever smoked for any length of time, the possibility of COPD still exists -- it can still occur -- within a certain amount of time -- I never quit understood that.  Usually, if you quit smoking after several years, your lungs to repair themselves, up to a point.  Even if you have COPD, quitting smoking can have tremendous effects on hour health for the better.  I hope you have quit -- and remember there is a lot they can do for you -- there are exercises, and also there are experimental drugs in the works that may can reverse some of the damage of COPD -- so, you do have good things coming your way.  

Still, you can't smoke for 15 to 20 year or more and not have some lung damage -- that is a fact.  I think there is a point of progression, kind of like liver disease, that if you quit drinking, or whatever, the liver can heal itself.  It is like that with smoking.  

Good luck.  

Debbie
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Flguy.........."Your doc is an idiot"

Plus........."The answer is Neupogen and NO dose reduction."

Best answer i have seen here

cando.
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You are right -- no one can say "absolutely not."  First it is practicing poor medicine and we all know that there are no absolutes until you've tested UND six months after treatment, and even then, there is a chance this virus could come back -- it has happened.  

I don't know why they said that -- I was arguing the point, and maybe that was annoying to the person I talked to.  Because I kept hitting this clinic about everything I had read and studied about skipping a dose -- I've also heard, as mentioned somewhere on this post, that one missed dose probably won't have an impact, but others say it can.  The point of the matter is I just will never know, especially if I don't achieve SVR -- and it is no guarantee whatsoever, especially with G-3s.  They have a funny way of being UND for a long time, right up to the end, and bingo, that virus can come back, but it can for anyone.  

I think the real important thing to remember is that it is probably wise and prudent not to get your hopes up to high while treating.  Keep focued and do everything to the best of yur ability and also keep in mind that this treatment may not be successful -- that is what I am doing.  I'm just looking at treatment as a possible chance -- and no more.  

Thanks for all your support today.

Debbie
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I don't have a history of any autoimmune disorders.  I did test positive for cryoglobulins in the blood, but I'm not sure about that.  This disorder does fall into the rhematoid artritis family, which, I believe, may be considered an autoimmune disorder.  Finding info on cryoblobulins is no easy tast.  First it is rare and I've read conflicint account about it.  One study said that "mixed cryo" is definitely an extrahepatic manifestation of HCV, and that it is fairly common in people who have this virus.  Another study said it isn't all that common in HCV patients.  After treatment, I'll deal it then.  Actually, because of cryoglobulins in my blood, I decided to treat.  I may not have.  There is no liver damage -- 0 fibrosis.  Supposedly treating successfully with IFN, and achieving SVR, can also knock out the cryogloblins, but that isn't guaranteed either.  What a dilemma!  Also, another wrench thrown into this cryo deal is that I did not test postive for RA.  So, I'm not even sure, to be honest with you, that this cryo is caused by HCV.  Maybe I've had it all my life -- I don't know.  Most doctors know little about it.  It is a mystery disease and for the most part is not real serious, but it can in some cases -- it can be real serious, even deadly.

Other than that I've never had a doctor tell me there was anything wrong in that area.  
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Yep!

My sentiments exactly.
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I would just do the shot and not tell the doc about it. :-)
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CockSparrow was a G-3 who had null response two times and went on to SVR.

He knew a heck of a lot about G-3's (and the related studies) and I wonder what he'd advise about you skipping a dose. I wish I could ask him.

He said, "Whats also clear is that G3s who RVR are dead easy to treat, at least as easy as G2s." I think he based that on the highly complex Berg study.

http://www.medhelp.org/posts/Hepatitis-C/3a-Riba-dosage/show/481276


"Tailored Treatment for Hepatitis C" by Thomas Berg, MD

"It is no longer appropriate to generalize that patients who have HCV genotype 1 and 4 are ‘‘difficult to cure’’ because of viral kinetic evidence to the contrary. Conversely, it is no longer appropriate to think of all patients who have HCV genotype 2 or 3 as ‘‘easy to cure.’’ Although genotype is an important driver of response and is useful in designing the initial treatment plan, it is clear that once treatment is initiated, RVR is the most important and powerful predictor of SVR."

Even though you've got such AMAZING predictors working for you, zero fibrosis, starting viral load of 50,000 (!), undetected after three weeks of meds, maybe earlier, female, I'm stumped why the doc would intervene with those numbers and not give you a study to support his decision or refer you to some sort of published guideline. And why didn't he offer a dose reduction instead of skipping it entirely? :(

I hope you keep us posted.

Susan


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If one didn't know their ANC off hand couldn't it be roughly inferred from the WBC level? So if your WBC is 1.5 then your ANC is also likely borderline? If your WBC is 4.0, well within range, couldn't it also be assumed ANC is in it's range?

Deb you have complications I don't so fwiw ... I was taken off after shot 11, 14, and 19, for *two* weeks each time to allow WBC/ANC's to come up. I felt much the same as you about the treaters (as opposed to the tx). No confidence. I was told the same by the Roche nurses. But VL tests at week 10, 19, and 31 showed UND. The stress they were needlessly putting on was much, much, worse than tx itself. How it all ends, SVR or not, remains to be seen. Just saying it is possible to remain UND through these kinds of tribulations.
Of course everyone is right, fight for an alternative, Neupogen, ... that WBC isn't bad, it's in range for pete's sake. It's something else they're looking at.
All the very best.
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Cocksparrow double dosed INF last go round.  He did the shock and awe approach and there was never any INF dose reductions or skipping doses.
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I can understand you not being in the position to look around for a new doc when you're so close to d-day for your next shot.  (I had to fight for a 4 week pcr and went to a private hepatologist - luckily I live in the city and had that choice).

My WBC went down to 2.2 and my ANC to .6.   I didn't have a choice of neupogen here so carried on being careful to wash my hands often and stay away from sick people.

I have had no luck with nurses who don't seem to be on top of the more subtle lab test readings which dictate this kind of call.   However, I DID  go to the accident and emergency at my local hospital because I was too scared to take my 3rd injection when my bloods had dived, and I thought I had a chest infection (it turned out to be  the 'riba cough' which I eventually got used to throughout tx).  

If nothing else, the hospital did immediate blood work,  and mentioned that they could ring an on-call hepatologist for guidance...... just a thought.     It was a pain and I was there for hours, but I went home more empowered.

Also, my hepatologist started 'poo-poohing' my internet research, but I mentioned that there was an 'expert forum' with a Mt Sinai Specialist (as above PortAnn's post) answering posts, and he concurred that I was on a reputable site... and took notice of my requests.    If you can e-mail your dr with the studies above and get him to ring you 'urgently' he may come around.

So very sorry you're having to go through this, and I hope you get some traction locally.
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"He knew a heck of a lot about G-3's (and the related studies) and I wonder what he'd advise about you skipping a dose. I wish I could ask him."
-------

He probably would have said to his doctor....

"Shouldn't you wait until my white cells drop below normal before trying to make me skip a dose?  Because according to the lab  4.0 is in the  normal range.  Plus there are no guidelines on how to dose reduce when the white cells are normal."

LOL

Co
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my anc was .3 and my wbc 1.3 the other day after inf injection, I take neupogen every week it anc will go back up to 2.0-4.0
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Deb, tell your doctor that you don't reduce or skip doses when the white cells are perfectly normal.  A result of 4.0 is whithin the normal range of 3.6 - 10.6.

It doesn't matter whether your white cells dropped a little as long as they're within the normal range.

Plus.....tell him it doesn't matter how low the white cells are as long as the NEUTROPHILS are okay (neutrophils are white cells that defend you against bacterial infections).   As hcvJames said, if the white cells are normal, that means the neutrophils must also be normal.

In other words, there's no reason to skip a dose.

I would say to the doctor, Explain to me why you want me to skip a shot if the white cells are normal.  That makes no sense.  Dose recuctions are supposed to be avoided, especially in the first 12 weeks of treatment.  

Here's a booklet written by hepatologists that explains when to reduce doses.  Page 87 in case you need to prove it to your doctor.


http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf

One last thing.  Don't have your blood tests done right after taking an interferon injection because your numbers will be lower.  Have the test done several days after the injection.

Good luck

Co
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Exactly.

I've never come across a discussion here of dose skipping when within normal range. :-O

Susan





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Something is amiss with this skipping a dose thing that we don't know about.  It just doesn't add up.  No way would I skip an INF dose with a healthy WBC and platelet count.

Trinity

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Agree 100%.

And just so you know not taking one shot is probably not going to up your energy level that much - usually it's the riba and anemia that get the lethargy level REALLY down to the point you seemingly can't go on any longer (but we do).  What is your hemo at?

Seriously everyone in here is in agreement this time so that speaks volumes - but we all have always realized that when at all possible stay on full dose meds. IF there were a serious complication and IF there were no neupogen then of course...dose reduce but right now you are not even "low" so what is their thinking? It is not correct.

G3 can be an easy geno or a tough geno and you just don't want to take that chance - there are no PIs yet for G3s so if you have to retreat - you'd have to do more meds for a longer time period.

What week did you go UND? I was going on the presumption that you were a geno1 (I cannot remember everyones stats - never could) and UND prior to week 6 is great for G1 but a G3 would have to have had it earlier for it to really matter I think they look for you to be UND by week 4 and that is just normal response rate - like a G1 being UND at week 12.  I think so anyway, if I am wrong I am sure someone will correct that fact (sorry but I was geno 1A and 1B).
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Deb had first vl at week three, so she went und between day 1 and week three end.

The problem is that deb has already exhausted talking to the doc and the nurses and they won't budge. She is either stuck with doing what they say or finding another doc which is not easy in short time as we all know. They only dispense her meds a little at a time at this clinic so she can't just take more or she will be short another time.

I think this thread at this point is not problem solving for her any longer, just adding to the frustration since she can't do anything.

Deb-While you continue tx, I would try to get another appointment with someone at the university even if it takes a while, Perhaps you can tell them you are in the middle of tx and need some advice promptly. Or if you know another doctor that can help advocate for you or get you an appointment earlier that would be great.

Perhaps since you responded so quickly this won't effect your svr at all so don't let it get to you too much, but it does go against the grain of standard tx.

- Dave
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Dave...you are right on the money about the point at which Deb is with her doc.

I would like to add one suggestion to Deb that I hope won't add to her pile of doodoo to wade through with all of this...  Ask your doc if he would consider getting a consult with a hematologist (blood doctor) who would take over the monitoring of your blood counts and possibly even prescribe Neupogen for you (if needed).  Some GIs and Hepatologists are "scared" (for lack of a better word) to go the Neupogen route because they aren't familiar enough with it -- it's more in the speciality of a blood specialist.  If you're not sick of suggesting things to your doc, try this...or keep it in the back of your mind in case you need the suggestion later.
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P.S.  Another idea that worked for a friend of mine from another Hep C forum was this:

Her doc was about to reduce her TX meds because of WBC issues and she knew from her internet research that she was not comfortable with a TX med reduction so she put her foot down and asked her doc to please find a way to get Neupogen for her.  He still was not comfortable prescribing it on his own so he finally agreed to consult a colleague of his that he knew at Mayo Clinic and the Mayo Hepatologist said:  Definitely give her the Neupogen -- so her doc gave it to her.  This was a classic case of her doc just not feeling comfortable with treating the blood issue which was not his area of speciality.  When he got another colleague's okay...he was okay with it.  

Deb, these suggestions might not fit for you right now, but keep them in mind for the duration of your TX.
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Another solution.  Find a snot-nosed little kid with a cold and do your best to catch the cold from the little rug rat.  Upon infection, your WBC will increase.  Voila, you CBC results will 'look' better.
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Unfortunately, getting sick with viral infection will not increase WBC. She would have to get something bacterial, like pneumonia, which I would not recommend doing.
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I might be willing to trade HCV for a bacterial infection.  The way the doc is conducting treatment Deb might be left holding the HCV bag.
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I remember when my doc wouldn't prescribe procrit.....but it was so totally needed and I would NOT dose reduce for anything.  It took some work and convincing through research (kindly provided by the folks in here) and I am so glad I listened to the guys in here rather than my own 'scared' 'not knowledgable' doctor and got it.

I doubt I would be cured if I had not kept the entire dose.  It did take work and dedication but it was well worth it (and that was right when I had a six point drop in my hemo in ten days and was almost dead...but perseverance paid off).

But it's each individuals choice as to how much of additional risk they are willing to add to their potential failure rate.  Personally, I was not and am glad I listened to the folks who guided me and not the doctor who just did not know better.
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I believe Deb has already stated she wasn’t going to consider changing her treating GI right now; so I won’t g there. However, there might be an acceptable option.

Deb— could you call their office and request a referral to a hematologist, so that another office could manage your blood? This would take the responsibility out of the GI’s office and put it squarely into one that routinely manages blood irregularities.

This ought to let the GI who is treating you save face, perhaps get you into an office that will manage this more aggressively, and give you a bitter shot at success.

Just thinking out loud here; this might have been mentioned above too; however I haven’t taken the time to read through everyone’s comments.

Good luck,

--Bill
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Good idea, Bill
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James -- I agree with you.  They likely are looking at something else -- I just have that gut sense, which is kind of scary.  It could be totally unrelated to HCV -- like markers for cancer.  They are doing this for a reason -- this is a respected and well known doc in town.  

There is a reason, and I'm beginning to feel that more and more.  There has to be a reason.  No doctor would risk a patient's chances for SVR until something was going on.  I will find out, after that next blood test.  

HCV may not be my biggest problem -- it could be something else.

Thanks so much for you wisdom and help.
Debbie
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Okay -- I'll comb the neighborhood for some sick kid and catch his cold -- hey, this was the best one I've heard!

Darn good, old boy!

Debbie
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Note tashka's comment.  Might not be as easy a a snivelling brat.
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Markers for cancer are generally done by an AFP test.  According to the numbers you have provided us on your blood work nothing is abnormal.  They don't generally look for cancer markers in routine blood work.

I think you are worrying yourself needlessly.  All this speculation could be eliminated if you ask your well known doc EXACTLY what he is basing his decision on to skip the INF dose.  The information you have provided is vague.

Trinity
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Maybe you can "harvest" some boogers.  I heard that sometimes have staff in them, a nice thriving bacterial strain! LOL

I think if you had something serious deb the doc would have to tell you, I doubt that's it, but that's my take!

Your gonna svr regardless,
-Dave
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Bill that is a real good recommendation.  I just got back from the clinic getting my riba.  I went through the whole thing again about the danagers of skipping a dose, and my WBC was still in normal range, blah, blah, blah.  With a piercing glare from the head honcho who runs that clinic, I was told that "your WBC has dropped to low to fast.  This is what the doctor does when this happens, and he has had great success at it.  He's done this for years."  Then she went on to say, that because I probably got a "Very early Rapid Viral Response and I had nothing to worry about.  Don't worry."  Then I said, but, but, but -- end of conversation.  Suggesting a hemotologist wouldn't work -- because I know what I would be told, "this doctors been reading lab reports for 40 years -- he knows what he is doing."  

It was a good suggestion -- and I appreciate your input.

The only good thing is I only have about 6 more days before my next injection.  Alos, I can't help but feel that maybe there is something else that doctor is looking for.  

Debbie
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Yeah, and that something may be a "God Complex".  Note to Emily:  Not a religious comment.
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You can always do half an injection. Then you would be sure to maintain some kind of Peg level. You can account for a missing dose later, saying that you messed up a shot. Nobody needs to know what really happened.

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Well good luck I have never heard of such lunacy but I am not a well known doctor who thinks a week 3 is a very early rapid response for a geno 3 - I thought that was pretty much expected.

Either way I guess he told us - let's hope the odds are on your side.
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I like the way you think.  I think it was Deb who once said that the clinic controls the meds that she receives.  Not sure if that's still the case, though.
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A couple weeks ago, the clinic was closed for two days.  I was upset because I was scheduled to have an injection on one of the closed days and was not told.  When I went in, I demanded that I give my own injections because I did not feel it was fair to be at the mercy of when the clinic was open or closed.  Now, I won that one.  I now give my own injections, thank goodness.
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That's fascinating. I just can't get enough of this subject.

Mike
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:-)  You gotta be sneaky when you have to.

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