not good news

[nyhepc]

taking peg 180/copeg 1000 times 5 weeks. had labs done today. compared these to labs of 7/8 and 7/22
wbc  3.3  2.5   1.8
hgb  14.2  11.1  9.9
hct  42   32   28.1
plt  116   116   90
he has pulled me off meds for 1 week, stating because of the rapid descent into the gutter(my words). depending on results of cbc on the 10th, will start over on peg 135/ copeg 800.
my thoughts:  no wonder i feel so crummy.
              riba 800 is still within the standard,right?
              what about the peg 135?
              i am concerned about the reduction in dose, everybdy says don't do it.  but am also concerned that i work in a healthcare facility. we get patients from the hospital with these superbugs...that's scary too!  there is absolutely nothing easy about any of this.
thanks in advance for your thoughts

lorrie

[chellski]

you know when i read these long threads, i forget whats going on - thanks for clearing that up about debbiedo - i was confused!
kathy - you're strong and jmjm is among many incredibly quickly informative people on this site - i can't even think straight sometimes..thats why i'm here....all the time........

later-
chelle

[nyhepc]

take it from one who now knows...keep on top of labs.
i wonder if part of the problem is the insurance companies. i'm sure they have parameters for the procrit and neupogen, you have to be below a certain number before they will approve the drug. that may have been part of my problem...i was over then under too quickly

[friole]

My test is a LabCorp and is headed exactly as Jim said the Quest test it "CBC with Differential/Platelet"

Jim, think I will get that test tomorrow.
Kathy

[jmjm530]

Mine is usually done as part of a larger panel but sometimes I have it done separatly. Quest labs notes it as "CBC W Diff and PLT" which means cbc with differential and Platelets. Not sure if that's the same as a simple CBC. If no one here knows, you can always call the lab.

[sunspot]

Is the Neutrophils Absolute done as part of a normal CBC? I don't see it on my last labs.

Dana

[jmjm530]

The way you're feeling, get that test done tomorrow by all means. When I had my big hemo drop, I had CBC's weekly, and twice a week for a short while. Hemo can floor out on you fast if you're not looking.

[friole]

I don't know what the corrolation is.   My Neutrophils are 39 and that is shown as a % and the absolute is 1.1 (and is shown in K/uL) How are you doing - any better - you were having a pretty rough time.
Kathy

[cougareyes]

Great thread, this info is so valuable; the drs sometimes don't seem too concerned until its almost too late. I have some blood count values that are listed as low, but not as low as some of you. Also i guess before they intervene the values has to be extremely low. My neutrophils are listed as segmented not absolute, does anyone know the conversion. 36.2 out of a range of 42.0 - 71.0       Thanks for listening

[friole]

You are the fastest research in town!

You are right on the neutrophils - they are shown in K/uL so I assume the K means 1000's so I am at 1100

My rx for the CBC's is for 5 times.  I don't think there were any particular dates on them.  I wonder if I should go get one (at LabCorp) tomorrow morn which would be exactly 3 weeks of riba and peg. I wasn't tired when I took that test last Fri and I am now
Kath

[jmjm530]

A two point drop in hemoglobin in two weeks will account for how tired you feel. I ended up in the ER with a little over 3 points in three weeks.

If it were me, I'd get set up with Procrit right away. Procrit takes two to four weeks to kick in, so if your hemo keep dropping and you wait a few more weeks to act, you could potentially suffer needlessly, or worse, get yanked off treatment.

The Neutrophils Absolute are usually expressed in larger numbers. I'm pretty sure your (1.1) is actually 1100, which is fine. Neupogen isn't indicated until it drops to around 500. But I'd check this out to make sure that it is 1100.

Platelets are great. Mine are 79 now. My doc doesn't get concerned until they hit 20.

[cuteus]

I believe debbie did the full course of tx,and is now 7 mo post tx with the best news until the 12 month mark, the spot you will be claiming for yourself not too long from now.

[friole]

Finally got them -- and no wonder I am getting tired.
            PreTreat         2 week
                             on treatment
WBC             5.0              2.7
RBC             4.6              3.99
Hemoglobin     14.6             12.4
Platelets      273               224
Neutrofils
  (absolute)   2.8                1.1

So that is a 2 point drop in the Hemoglobin(even without a calculator-haha)
The rest of the stuff - I am going to have to go back and read a lot of the other posts and start researching.  The have scheduled an appointment with a Hemotologist  on 8/16 (that will be right after I do another CBC)  They called with an 8/22 appt and I told them I thought my counts were dropping pretty fast and would like one sooner so they upped it.  Still, that means three more weeks of possible dropping counts.  

In your opinion and from what you (anyone) have seen, once these numbers start dropping, do they keep on dropping so fast?  Any comments appreciated

[nanniegea]

Congrats....job well done!!! Gives us all some hope that this virus can be beat.....may God bless.

[DebbieDo]

Hi, I think you might have me mixed up with the other Debbiedo..Im Debbiedo #1.....the other one might be from NY.....Im from CA

[cuteus]

you only hugged him and jumped for joy? what is the encore for the year mark?

You made it!

[jmjm530]

My doctor doesn't get concerned until platelets hit 20. Then they intervene with Neumega, they don't stop therapy. Lorrie at 90 still has a way to go. My platelets are 70 now, down from 177.

[RobBetz]

Hi All,

I just got back my test results from week 5..I am on week 7 of shot....my ALT is now 30 down from 127 and my AST is 25 down from 57...hoping to be undetectable by week 12.

Robert
AOL IM:  roberttbetz
Yahoo IM: roberttbetz

[nyhepc]

thanks for your thoughts.  here's my plan.  will take the week drug-free, so i can breathe again.  today, will go pick up my lab and insist that he contact the ins co re: the procrit, neupogen, so that we are ready when i start again. if i have that, no reason i can't get back to full dose. if this causes a setback at 12-wk PCR, will insist he try again at 16. if this is a total lost cause, will ditch this guy and go see lauren's doc in albany and start over. have already spoke to PCP about referral.
in defense of my doc, he was aware i was getting into danger zone, which is why he ordered the test in 10 days and not 2 weeks. think my numbers dropped more than he expected.  he is very conservative, but it's looking like that's not what i need :)
warm wishes to all
lorrie

[jmjm530]

I share your frustration waiting for lab results.

Depending on state laws and the specific lab, you may have a number of options.

Often, there's a "send/fax duplicate results" box on the requistion form. If not, the doctor/nurse can write in such instructions. (Often they're more then happy to do so since it means they won't have to field your phone calls.) In some states I believe you may not even need such instructions and can contact the lab itself.

In my case, I don't have blood drawn by the heavy-handed tech at the doc's office, but take my requistions to a local Quest blood drawing center where an older Swiss lady with the hands of watch maker painlessly does her thing without a pinch or bruise.

Because my doctor has filled in my name and fax number, I generally get the results the next day and only call my doctor's office if there's something I think they should look at. When I do call, invariably they haven't seen the results yet. LOL.

[friole]

NY - What is happening with you just reinforces the fact that we must take charge of our own cases and we must have access to out lab reports ASAP.  I had my first CBC and liver panel done last Friday, after my 2nd week.  I am STILL trying to get my lab reports.  I am getting so frustrated with the doctor's office. For two days I have had calls into the nurse, and she has not called.  Yesterday I was incredibly tired (so suspect a drop in red blood count) and so I really want to see that blood work. I am going to call the office again today and tell them I am coming over to pick up the labs.  The problem is, they are are only game in town.  There are 3 GI's and they all office together. One of them won't take Hep c's anymore (and he is the best) and the other one - I don't know - I may ask to transfer to him.  I hope they get you on the Procrit soon.  If not, I hope you do change doctors.

DEB - Hooray.  Grat news.  THank you for sharing

ROBERT - I am sooooooooo glad to see a post from you.  You were beginning your shots right when I got dx and started reading this forum so I have been wanting to know how your were doing.  As I recall, you didn't have sides last you posted.  How is that now?  I will take shot 4 tomorrow and other than 2 tired days, I have not had any sx to speak of.

Kathy

[avidreader]

You mentioned a doc in Albany. Albany NY? I'm interested because my doc is in Troy. I like him so far, but so far we haven't had any tough treatment decisions to make. He is a very strong advocate for better/more federal funding/less stigma etc. for Hep C folks and I do like his attitude, so I'm hoping that my doc isn't your doc! Good luck--it sounds like you are getting lots of good advice from folks.

[mikesimon]

Congratulations Debbie. I know how great you feel. CELEBRATE!!! I just had a PCR at 13 months post tx and I too was clear. Recently I had a bad motorcycle accident and worried about hepc recurrence. I had nothing to base my fears on but this virus is freaky and you just wonder sometimes what might trigger a problem.
nyhepc, I too agree with jimjim. I much prefer supplementing for low Hmg and/or wbc rather than reducing doses or stopping tx. I wish you the best. Mike

[chellski]

ny - sorry to hear your having a hard time right now - it seems you've gotten the best advice and can approach your doc with it. mine always seems so surprised when i have info to come back at him with....good luck!

debbido & robt:   yea!  looks like you're both on your way - debbie i'm a type 1 and doctor willnot do under 48wks  good luck!
robt - haven't heard from you in so long - was wondering whats up - glad to hear you watching ur #' and all is going in right direction!

<3michelle

[jmjm530]

Chances are you feel "crummy" mostly because you're anemic.

A better alternative would be to start on Procrit for the anemia. I think your doctor is pulling the plug too soon and reducing your chance for SVR -- especially by stopping riba during the first 12 weeks. Have no idea why he's stopping the Pegasys.

Your platelets look fine and the only other number you should be concerned about is not your WBC but your ANC (absolute neutrophils). If they're above 500, you're OK. If not, then Neupogen will bring them back up.