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,

[Marcia2202]

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

[mikesimon]

That's fascinating. I just can't get enough of this subject.

Mike

[Deb9991]

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.

[FlGuy]

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.

[nygirl7]

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.

[Marcia2202]

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.

[FlGuy]

Yeah, and that something may be a "God Complex".  Note to Emily:  Not a religious comment.

[Deb9991]

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

[spectda]

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

[Trinity4]

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

[FlGuy]

Note tashka's comment.  Might not be as easy a a snivelling brat.

[Deb9991]

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

[Deb9991]

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

[FlGuy]

Good idea, Bill

[Bill1954]

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

[nygirl7]

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.

[FlGuy]

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.

[tashka]

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.

[FlGuy]

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.

[meakea]

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.

[meakea]

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.

[spectda]

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

[nygirl7]

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).

[Trinity4]

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