WBC Count Low; Told To Skip 2 Interferon Shots.

[Carlhcv]

I don't have the numbers but the Doc's office help called me the morning after my latest CBC and I was told to skip 2 shots. She said the number had to have been below 2. I don't have insurance and can't afford special drugs or blood transfusions. Any opinions on this? How will this compromise my tx? I'm on week 18 of Peginterferon, Ribaviron & Victrelis. I thought I was doing pretty well, just mainly short of breath.

[Dee1956]

Hi, I am assuming you are UND.  I had to reduce my interferon and in fact once I was told not to take a shot until my numbers came back up.
But two? I would think (in my inexperienced opinion) that you would skip one, they would draw blood to see how you are then go from there.
Kind of odd to skip 2 without blood draws.
I would also think your WB could be way under 2.  When I treated mine went down to 1.4, I continued to treat.  That was after 6 months of tx.  I could go look at other blood work to see how low it went.

The thing they were worried about for me was the Neutrophils and Lymphocytes. something about going below .50

I am sure that others with more experience will be here soon.  I just wanted to check in
Shortness of breath is awful, I had that with my low HGB.

[Carlhcv]

I believe that my last VL test was at 8 weeks and I was detectable but down to "9". These tests are the most expensive part of my tx at $500+ each so we agreed to minimize them and I will get one at 24 wks and 36 wks and 6 months after completing 48 wks of tx. The CBCs are only $15. I am probably und now but won't find out for 6 more weeks. Of course if I am not und at 24 & 36 wks, tx will be stopped. I hate these shots but am worried about skipping 2 of them. The office girl told me that you can skip up to 4 in a row.

[mikesimon]

Rate of Infectious Complications during Interferon-Based Therapy for Hepatitis C Is Not Related to Neutropenia

"....Despite these concerns, this analysis demonstrates that systemic antiviral therapy for HCV infection is associated with a low risk of infectious complications. The majority of these infections are minor. There is an absence of correlation between the neutrophil count and rate of infection in recipients of IFN-based therapy for HCV infection. Even in patients with neutropenia, the majority of infections occurring during therapy were of minor consequence and did not require hospitalization or modification of treatment for HCV infection. We conclude that, in most cases, reduction in IFN dose and/or the use of G-CSF in those developing neutropenia is not warranted..."

http://cid.oxfordjournals.org/content/42/12/1674.full#F4

Risk factors for infection during treatment with peginterferon alfa and ribavirin for chronic hepatitis C.

"CONCLUSION:

Bacterial infections during treatment with peginterferon alfa and ribavirin are not associated with neutropenia. Older patients and patients with poorly controlled diabetes mellitus have a greater risk of developing infections during HCV treatment..

http://www.ncbi.nlm.nih.gov/pubmed/20830784

[Carlhcv]

I did do some research on this and found a definite relationship between Neutropenia and Interferon, although all were relating to cancer chemotherapy. Yes, Interferon is a chemotherapy drug. It seems that if the WBC count drops below "1" that some intervention is needed to boost the immune system. I don't have insurance and can't afford to land in a hospital. I would have thought that reduced dosage of the PegInterferon Redipen for a couple weeks would be worth a try. Maybe the Dr. is being extra careful that I don't end up hospitalized and bankrupt...

Mike, at what level are we considered to have neutropenia and at what level is emergency intervention called for?

[mikesimon]

An ANC of less than 1500 per microliter (1500/microL) is the generally accepted definition of neutropenia. Neutropenia is sometimes further classified as:

    mild if the ANC ranges from 1000-1500/microL,
    moderate with an ANC of 500-1000/microL, and
    severe if the ANC is below 500/microL.

Treatment depends upon the cause and severity of he condition as well as the underlying disease state responsible for the neutropenia.

http://www.medicinenet.com/neutropenia/page2.htm

[frijole]

Can you get a copy of that CBC?  When they tell you the number is under 2, I am thinking they are referring to the complete white blood count.  Carl, it is not unusual for the WBC to be under 2 on tx.  In the two times I have treated, my WBC has rarely been over 2 for the entire treatment. A lot of  doctors get all bent out of shape about this, but it is the absolute neutriphil count (ANC) that has more meaning, and even then, that can go as low as .5 like dee said before it becomes an issue.  IT would be helpful for you to get your actual numbers and post them here.  I had neupogen but only took a couple of shots the whole of my 48 weeks.

Bean

[flcyclist]

I personally think that a reduced interferon dose for a week or two would have been a better approach, rather than skipping two doses.  It really depends on your current absolute neutrophil count (ANC) and the experience of your treating doctor.  Most experienced hepatologists wouldn't consider dose reductions or administering neupogen for an ANC over 0.5.  Some less experienced docs get excited when they see the ANC go below 1.0.  

As Mike pointed out above,  there isn't a relationship between risk of infection and low ANC for HCV patients.  However, there IS for cancer patients and this is where many of the treating doctors get overly concerned for fear of infection.  

My ANC was very low (< 0.5) throughout my 48 week tx.  My doc didn't want to do any dose reductions so I was administered neupogen 2x weekly.  Even with that, on some weeks my ANC level was so low it didn't even register.  However, I never had any infections throughout tx.  Maybe I just got lucky???   This is a discussion you should have with your doctor.  You should also keep all your lab results and keep them in a file for future reference.  Good luck to you.

[ActingBrandNew]

"I believe that my last VL test was at 8 weeks and I was detectable but down to "9". These tests are the most expensive part of my tx at $500+ each so we agreed to minimize them and I will get one at 24 wks and 36 wks and 6 months after completing 48 wks of tx"

I dont know your full story but the thing that alarms me are your VL check intervals. If Im not mistaken, the proper protocol for VL blood drawls are at week 4, 12, 24, and 48. I was under the impression based on studies that these protocols were the standard in being able to identify early and rapid virological responders. I dont quite understand why you had an 8 week VL check instead of a 12 week check. I mean its fine to have as many VL checks as you want so long as you still  have them on the standard weeks. Because I wasn't UND until week 5 I was clinically classified as an EVR....versus had I been UND a week earlier I would have been an RVR.

Its important to know when you became UND because it can help predict your chances of SVR. Its also important to know when and if you have a viral breakthrough. Like I said, I dont know your full story but from what you wrote it seems that you were still DET at week 8 and because of the cost you will not have another VL check until week 24. So my understanding is that you have missed the 12 week test as you are on week 18 now. Its important to follow the guidelines for proper classification in the unfortunate event that you have to re-treat.

Virological Responses During Therapy and Definitions
Virological Response Definition Clinical Utility
Rapid virological response (RVR) HCV RNA negative at treatment week 4 by a sensitive PCRbased quantitative assay May allow shortening of course for genotypes 2&3 and possibly genotype 1 with low viral load
Early virological response (EVR)  2 log reduction in HCV RNA level compared to baseline HCV RNA level (partial EVR) or HCV RNA negative at treatment week 12 (complete EVR) Predicts lack of SVR
End-of-treatment response (ETR) HCV RNA negative by a sensitive test at the end of 24 or 48 weeks of treatment Sustained virological response (SVR) HCV RNA negative 24 weeks after cessation of treatment Best predictor of a long-term response to treatment Breakthrough Reappearance of HCV RNA in serum while still on therapy Relapse Reappearance of HCV RNA in serum after therapy is discontinued
Nonresponder Failure to clear HCV RNA from serum after 24 weeks of therapy Null responder Failure to decrease HCV RNA by  2 logs after 24 week of therapy Partial responder Two log decrease in HCV RNA but still HCV RNA positive at week 24

http://www.aasld.org/practiceguidelines/documents/hepatitis%20c%20update.pdf

"I was told to skip 2 shots."

What about a dose reduction? Why skip altogether and not reduce the interferon? If you have room to reduce Id speak with my doc about reducing the dose rather than skipping it. And skipping 2 doses? If the CBC is relatively inexpensive than why skip 2 if you dont even know if your WBC have improved? Ask your doc for a CBC after the first week of missing or reduction to see if it improved. Presuming that you need 2 weeks interferon free to improve your WBC may jeopardize your TX.  Just my opinion.

[medic54]

If I were you I'd get another doc. The order sounds odd but just the fact that he/she had the 'office girl' call with this message (no opportunity to question) would be enough for me. Good Luck

[medic54]

To my above post I will add an event in my treatment: I was plagued with neutropenia throughout treatment and my doc was fine with it "as long as it stays above 500". It hovered between 550 and 650 most of the time. I eventually went on Nupogen the last 2 months but prior to that I get a call from another one of the gastro docs in his group (weekend coverage detail) and she's near panic telling me my labs just got back, my ANC is 550 and I need to cut back on my ribavirin (now this is a board certified gastroenterologist believe it or not) . Well, I ignored that (it's the economy stupid) and the next week my regular doc concurred with my call...but as they're all in the club, did his best to CYA her incompetence.

[medic54]

he started me on Nupogen ("or we'll have to cut back on your Peg") when my proceeding labs came back:
1- ANC  462*
2- ALC 1085
3- WBC  1.9
It was all about the ANC as my WBC total had dropped lower before and not a word about it. Lymphocytes dropped from pre-treatment but were still within normal limits. Read studies stating that with HCV 300 should be OK and that it doesn't get dangerous till about 100. Nupogen worked for me with one shot every 10 days (155#, 59 yrs, stage 3, peg-180/d, rib 1000/d).
Good Luck

[medic54]

Check the Nupogen thread a few prior to yours here. A post by Bill1954,
re- med help purchasing (Nupogen) through needymeds.com

[ppmguy]

           my lab work comes back as wbc with differential.  mine was below 2  most of tx.  when my wbc with diff. hit 1.6, my dr had me reduce my peg to 135 mcg, for one week. i questioned my dr, and she replied that was tx protocol.  the next week my wbc was at 1.9 and cotinued at full dose.  
            when i was on soc in 2008, my dr had me skip a full dose and i became detectable.  peg inf has a 5.7 day half life, so i would question my dr.   dont have the knowledge to tell you yhat the VIC and RIB can sustain your status without peg.
                                             barry

[Carlhcv]

I appreciate all of the feedback. I got some info from the office girl. WBC is 1.65, This can also be expressed as 1,650. She couldn't find an  "ANC". RBC is 4.1. Hemoglobin 12.4. My Doc knows my financial situation and is trying to keep me from ending up in a hospital. He is treating me for free and I'm getting the meds for free. You guys are not doctors and cannot advise me to go against his orders but I am leaning toward either doing a low dose shot for 1 or 2 weeks or skipping just 1 week and getting a CBC before the next shot. I don't want to jeopardize my tx because my doc is being extra cautious.

[can-do-man]

Not sure what makes your doctor think with that level you might end up in the hospital, and I agree with Mikes statement risk of infection is really low....... My ANC got as low as .3 and my doctor never freaked but he also deals with TP patients.

As for neupogen, you can get that for free also, many here have. She can't find your ANC levels? Oh my, is she also the one who said you can skip up to 4 shots?

Sorry but the care your getting doesn't seem to good.

[ActingBrandNew]

"You guys are not doctors and cannot advise me to go against his orders"

Not sure anyone here claimed to be a doctor nor suggested you go against your doctors orders but merely offered suggestions based on life experience. Regardless if you are treating for free, you still have the right to actively participate in your treatment by educating yourself and making informed suggestions. Hope you figure it out.

[jules2551]

Call back the "office girl" and ask her what your Neutrophil # or % is.  You can calculate your ANC level with knowing your WBC is 1.65.

My WBC was normally under 2 and ANC as low as .31.  I was giving Neup shots for about 1/2 of tx.  Like Cando said you can get it free and she should know how to calculate your ANC levels.

You are going to have to be your own advocate here.  Get all your lab results and make any appt with your Dr quickly

[Carlhcv]

"You guys are not doctors and cannot advise me to go against his orders"

That didn't come out right! I meant that I wasn't going to ask if that would be OK because the folks here are not doctors, even though many seem to know more. My Dr. is a Gastroenterologist. I don't want to say more because he might see this. I cannot change Drs. because he is treating me for free. That means that I have to be informed and help with my own tx decisions. Thank you all for very knowledgeable and helpful input. My next appt. is June 21. I think that I will take the reduced shot and not skip 2 shots. Apparently he is more comfortable seeing wbc count over 2. Now I need to figure out how to tell him that under 2 is OK and I can get Neup shots for free if needed. With luck wbc count will go up.

[flcyclist]

Since dose reductions are based on the neutrophil count (ANC), then your doctor must know this number in order to make this decision.  It sounds like his office staff doesn't know how to read the lab report, which doesn't surprise me.  

The following is from the Pegasys package insert: "Dose reduction to 135 µg PEGASYS is recommended if the neutrophil count is less than 750 cells/mm3. For patients with ANC values below 500 cells/mm3, treatment should be suspended until ANC values return to more than 1000 cells/mm3. Therapy should initially be reinstituted at 90 µg PEGASYS, and the neutrophil count monitored."

[jules2551]

Go to www.neupogen.com and click on AmgenAssist and answer the questions.  This should get you assistance if not free neupogen

[medic54]

flcyclist makes a good point. This decision is certainly base on your Absolute Neutrophil Count and if the 'office girl' can't find it...something is really wrong. The Pegasys disclaimers above must be taken in their whole context though IE-liability avoidance. Almost every study I've read never alter the dosage at all above 500...and I've read a few times that HCV treatment patients shouldn't get into trouble until it gets below 100. But since she couldn't find it ??? and who knows, you could be at ?? And if your doc doesn't call you well I guess you have no choice but to reduce. But you know, if you walk in there they have to let you see your labs. I understand your doc seems like a very honorable person treating you for free (as my grandfather did but those docs are rare today) but you have to be your own advocate because if he/she are wrong...they just move on but you loose. In my line of work, I unfortunately have to step in and become a patient advocate a least once every couple of weeks.

[Carlhcv]

I bookmarked the neupogen site for future reading and reference, thanks. I see this dr. in one of many offices that he uses. I think that Monday I will drive to his main office and get the paperwork. I will take a reduced shot of Peg-Interferon. Then I will go from there. There have been other red flags that this doctor may not have a lot of experience with hep C. The first Dr. that I saw for it quoted me $170,000 for tx! I'm getting tx for the cost of the bloodwork. $15 for CBC, $500 for VL.

[medic54]

The theory behind the reduced ANC protocols is base on cancer (radiation therapy) and study after study concludes that HCV patients don't get into trouble (infections) like they do. My doc explained it as "pegilated interferon alpha puts your remaining immune system on hyperdrive.. that's what it's designed to do". But even then his limit was 500 and he let that slide for a bit but when I hit 395 I got Nupogen. Required 1 shot ever 10 days which kept my ANC between 700 and 1050. You might want to investigate the free or reduced Nupogen avenues others have talked about, print them (along with a study or two establishing safety at an ANC 500 level) and take them to your doc. My doc was going to make me wait 6 months for my after treatment SVR test so I printed a study showing only 1% difference between 4wks and 24wks and got my order then (@10 wks).

[medic54]

That's with a VL TMA test (10 IU) .. the PCR testing is not near as sensitive (typically > 40 IU).