Lab Results

[B367]

Just what is neutrophis? Last week my Dr. cut my peg-intron in half because my neuptrophis, wbc and platalets were low. I went for labs yesterday and he called this evening and said no inj. cut ribavirin in half. Go back Monday for lab draw. I don't have the #'s. He said last week my Neutrophis was 500 and this week it was below 400. He also said that if my counts didn't increase he didn't see how I could make it through 48 wks. of treatment.I would have to pull off and wait for the new stuff coming out hopefully soon. You know, all I ask for since starting (all of 5 wks. ago) was for my body to please let me do this treatment. I'll take the side effects, whatever comes with it. Just let my body let me do this.

[B367]

Thanks Karen,  I went for another blood draw Mon. They haven't called yet. I'm taking that as a good sign. If I don't hear from them first thing this morning I am going to call. To nite is shot night and I need to know where I stand.I surely don't like the Peg. but I want to beat this ugly beast. It has taken over my life, seems like my every waking thought and sometimes even in my dreams. Hope all is going ok in your world . Thanks,  B

[B367]

Thanks can-do-man. My Dr. is keeping on top of my blood counts. I have actually been going about every 5 days. I go again Mon. morning. I will ask him about Promacta.  I do feel confident that he will get me through this if at all possible. He is a gastro. doc. but specializes in liver disease and hepatitis . He works closely with Drs. at UNC Chapel Hill. He sent me there a little while back to meet with transplant specialists. The Dr. there told me he felt confident that my Dr. could take care of me and he did not need to see me back.I'm taking that as a good sign. Thanks again.

[can-do-man]

I would also like to add, I hope your doctor is doing weekly blood counts, platelet levels and ones ANC will bounce around during treatment. When my platelet level dropped to 29 two weeks later they were rising on their own and held steady in the mid 40's the rest of treatment as did my ANC.

[can-do-man]

Hi, your platelet level is very low and action should be taken, there is a drug called Promacta. A few here have used it and it seemed to work very well for them. Crossroad's used it to keep herself treating, she is also cirrhotic and was somewhat into ESLD. She is now SVR. I can understand his reason to lower your interferon based on that, as for your absolute Neut being .4 I don't see that being a problem but that should rise being your dose has been lowered (or stopped).

I feel for you as your in a tough spot, I would either seek a second opinion or at least insist that your current doctor provide you with "rescue" drugs. While I agree that there is new drugs in the works we are still close to 2 years away for any all oral treatments for genotype 1. and that is on the hope there is nothing that goes wrong while these are in current trials.

Good luck to you, when I last treated I done so with victrelis and all my numbers feel like yours but my doctor understood I needed to beat this now and stayed on top of it and now I am SVR......... Hang in there

[B367]

I picked up lab results yesterday. They are WBC 1.3   RBC   3.33 Hemoglobin   10.8 Hematocrit   32.2 Platelets     25 Neutrophis    30 Neutrophis (absolute)0.4  

[flcyclist]

I just wanted to add that my ANC also went very low (350) at about week 7-8 of my 48 wk tx.  I was a Geno 1 and did dual therapy just prior to the release of the PI's.  My doc didn't want to dose reduce, so I started on Neupogen 2x per week and continued this throughout the 48 wk tx and a bit beyond until the ANC recovered.  Some weeks the ANC was so low just prior to the shot, even with the neupogen that it barely was readable.  I never had any bad side effects from the neup shots that I could separate from the other meds.  I didn't want to dose reduce since I didn't want to reduce my chance of success and my doctor supported that approach.  I was fortunate to SVR with this approach.

With the addition of the PI's this attitude of dose reduction seems to have changed some.  However, since you are cirrhotic, you don't have many treatment options if this fails.  I would be pushing for a second opinion and perhaps another qualified hepatologist to guide you through tx.  The low platelets is another concern that could affect your approach.   Good luck to you and hope you nail it this round.

[Shdwsldy]

Yes, I wonder why they haven't had you try the Neupogen as well.  Your neutrophils that low are and even my husbands current doctor wouldn't let him start the Incivek until it was up t 700.  Neupogen is a fast acting rescue drug, but also has a short time period it is effective at about 2-4 days.  Hubby's hepatologist and hematologist had gone "round in circles" over the timing of his Pegasys, Neupogen, and lab tests.

Aside from Duke University, UNC is also closely located in Chapel Hill.  Hubby sees Dr. Jama Darling (http://findadoc.unchealthcare.org/directory/profile.asp?dbase=main&setsize=10&last=darling&pict_id=0003079)  However, if you are not comfortable with even the slightest deviation from FDA approved guidelines then this is not the doctor for you.  

But it is important to have a mutual agreement and understanding with your doctor.  If you find you can't openly communicate with the current doctor, it may be time to find another doctor you are comfortable with.

[can-do-man]

ppmguy makes a good point, being your genotype 1 these new drugs that are expected to be approved are for treatment naïve only...

[ppmguy]

          hey B367,     i assume you are a genotype 1.  please correct me if i am wrong.  if you are geno 1, you will not be able to treat with the new drugs.  neupogen is really your best option right now.  you need to stay on tx.  

[pooh55811]

PS: I also need to add that the new treatments for Genotype 1, which hopefully will be here in 2014, will still include Interferon.

[pooh55811]

I am sorry you are having these problems so soon into treatment. I agree with Can-do-man that you need to get a new doctor, ASAP. Your current doctor is risking your treatment success.

You said in a previous post that you are Genotype 1, that you have Cirrhosis, that you have had low platelets for some time, and that you will be doing 48 weeks on Triple Med. Treatment.

What is the third drug that you are doing?

You cannot do Triple Med. Treatment without the Interferon. The third medication (Incivek or Victrelis) prevents replication of the virus, but it does not kill the virus. It is the Interferon and the Ribavirin, working together, that create an antiviral state that eventually rids you of the virus. You need the Interferon and the Ribavirin.

Since you have Cirrhosis and your platelets are already low, you should be seeing a Hepatologist at a large medical center, preferably one that is affiliated with a liver transplant center. There can be more treatment complications when one has Cirrhosis so you want to be sure that you are seeing a Hepatologist who is affiliated with a large medical center.

I know you live in Mockville, NC. You are about 100 miles from Durham, NC. Duke University Medical Center is located in Durham. If I was you I would call and get an appointment with a Hepatologist at Duke University Medical Center ASAP. If your finances are a problem, Duke has a sliding scale payment system (according to income) and they also provide free care for those who cannot afford it and who qualify. I know 100 miles is a long ways, but several forum members traveled long distances to get good care. Sometimes one just has to travel to get the care that is needed and to be sure your treatment succeeds.

The physicians are listed as Gastroenterologists but keep in mind that the vast majority of Hepatologists are Gastroenterologists who specialize in liver diseases.

http://www.dukehealth.org/services/gastroenterology/programs/liver


Duke’s team of physicians and nurses provides outstanding clinical care to patients with a variety of liver conditions. Many patients can take advantage of the latest breakthroughs before they become widely available through clinical trials.
Benign Disorders

We offer treatment for these conditions:

    Hepatitis B
    Hepatitis C
    Nonalcoholic fatty liver disease
    Autoimmune hepatitis
    Primary sclerosing cholangitis
    Primary biliary cirrhosis
    Hemochromatosis
    Wilson’s disease
    Alpha-1-antitrypsin deficiency

Malignant Disorders

Duke offers care for the complications of cirrhosis, including liver transplantation. For more information, see liver transplant.

We also offer treatment for liver metastases. For information, see gastrointestinal cancer.

Appointments

For more information or to schedule an appointment, call 919-684-6437.

Information for referring physicians can be found on the Appointments and Referrals page.
Physicians

Physicians offering this service include:

    Abdelmalek, Manal F.
        Medicine / Medicine - Gastroenterology
    Brady, Carla W.
        Medicine / Medicine - Gastroenterology
    Diehl, Anna Mae E.
        Medicine / Medicine - Gastroenterology
    Muir, Andrew J.
        Medicine / Medicine - Gastroenterology
    Ravindra, Kadiyala V.
        Surgery / Abdominal Transplant
    Smith, Alastair D.
        Medicine / Medicine - Gastroenterology
    Tillmann, Hans L.
        Medicine / Medicine - Gastroenterology


Best of luck.

[can-do-man]

Being that your cirrhotic makes it all more important that you stay on full doses, and with his comment about new drugs coming out really makes me nervous in his thinking. What is his plan going to be if these new drugs don't cure you as your running out of options and to be honest the limited results so far are not that great and even less so if your type 2 or 3.

Neupogen has been used by many cirrhotics here, while I am also cirrhotic my Hepa didn't bat an eye when my ANC dropped below 500. I was on Procrit throughout treatment and had no problems... I really think you need a second opnion as your doctors reasoning does not make sense. You need to beat this now and he should be giving it his all and not thinking about what might be around the corner....... Best to you.

[B367]

I don't have the paperwork on labs. I am going by there tomorrow to pick up. I did ask him about rescue drugs last week when I was there.His response was that the risks were greater than the benefits. I don't know if that is because I have cirrhosis. I am just lost! My platelets have been low for several years because of the cirrhosis.

[can-do-man]

I'm sorry I should add that if your doctor is so concerned that your ANC is at 500 or below then why has he not gave you Neupogen, it's fast acting and would keep you on full dose, unless your HGB is also low I am not sure why he is cutting your Riba. As for your platelets do you know what they are?

[can-do-man]

Sorry to hear this but your doctor does not seem to be up on doing treatment, you need to get a second opinion fast. stopping interferon and cutting your riba in half is not to smart. Please seek out a new doctor..

Good luck