Low White Blood Court

[Deb9991]

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,

[Trinity4]

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  

[Trinity4]

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

[meakea]

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).

[FlGuy]

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.

[nygirl7]

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!)

[meakea]

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.

[carol411]

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

[Deb9991]

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

[Deb9991]

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

[Trinity4]

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

[Deb9991]

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

[Deb9991]

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  

[Deb9991]

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

[portann]

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

[Deb9991]

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

[Trinity4]

" 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.

[Deb9991]

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

[portann]

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

[portann]

Our letter crossed in the mail!!!

xoxo

[djbn13]

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

[Deb9991]

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

[portann]

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

[nygirl7]

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.

[Deb9991]

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