not good news

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

[jmjm530]

In case you want to present some ammo to your doc, there's plenty like this on the net: http://tinyurl.com/7uv4q

The summary reads:

In anemic HCV-infected pts on RBV/IFN or RBV/PEG-IFN, EPO (PROCRIT) maintains RBV dose and significantly improves anemia and QOL. EPO has the potential to improve adherence rates, which may in turn improve SVRs.

Sorry you're feeling so lousy and have to go through all this.

-- Jim

[DebbieDo]

Hey there everyone, great news for me.......Had my PCR at 7 months and guess what, yeah, thats right..IM UNDETECTABLE
Great news for all you 1's out there, there is hope..
I killed the *******...Im so happy that i can leave all this behind me now.  With regular checkups Im good to go.....I had a low VL, 788,000, with mild fibrosis....I was so excited with the news, hugging my GI, jumping up and down he told me if i didnt settle down he was gonna call in the "men in the white coats".....I want to thank everyone for their support throughout tx. Even thou i didnt post alot i was here everyday reading and learning and praying for everyone here to receive healing from this terrible disease...Just to thank a few of you.
Chevy, LvdbyGOD, V I C K I,  TallBlonde, REV, TOny, Cuteus, SNook, Maj, OldHippe chick and if i left anyone else THANKS FOR ALL YOUR LOVE AND SUPPORT........WE ARE FAMILY in the most unique way.......I will continue to lurk here, forever, i guess....WE never ever seem to be far away from family, especially in our thoughts...LOVE YOU ALL>........
                    Debbie  :)~

[Tahquitz]

You need to follow through and stay in the therapy for whatever it takes. If you are a healthcare worker and may be exposed to 'Superbugs' then be especially careful or transfer to a postition less hazardous to you. I was infected by an MRSA that hung on for 14 days in a hospital + homecare for 20 more. Eat a high-protein diet that works to maintain strength and continous hydration. I maintained a diet of 100+ grams protein and over 120 oz. of water(+ other liquids)each day and stayed as physically active as my energy level would allow. That probably saved my life when the bug got me.
I was on Peg 180u and Copeg 1200mg per day.  
Don't give up-Stay Positive!

[DebbieDo]

Hey there everyone, great news for me.......Had my PCR at 7 months and guess what, yeah, thats right..IM UNDETECTABLE
Great news for all you 1's out there, there is hope..
I killed the *******...Im so happy that i can leave all this behind me now.  With regular checkups Im good to go.....I had a low VL, 788,000, with mild fibrosis....I was so excited with the news, hugging my GI, jumping up and down he told me if i didnt settle down he was gonna call in the "men in the white coats".....I want to thank everyone for their support throughout tx. Even thou i didnt post alot i was here everyday reading and learning and praying for everyone here to receive healing from this terrible disease...Just to thank a few of you.
Chevy, LvdbyGOD, V I C K I,  TallBlonde, REV, TOny, Cuteus, SNook, Maj, OldHippe chick and if i left anyone else THANKS FOR ALL YOUR LOVE AND SUPPORT........WE ARE FAMILY in the most unique way.......I will continue to lurk here, forever, i guess....WE never ever seem to be far away from family, especially in our thoughts...LOVE YOU ALL>........
                    Debbie  :)~

[Aubbie]

Congratulations girl, I am so happy for you and needed to hear this story.  Iwould jump for joy too! I will know on 10-28 if my numbers go down .  I am Type 1 and very mild bridging Fibrosis. MY count 129385.Shot 5 but my md said last week I could have procrite and I am very very weak and its affecting my asthma and I am using my breathing machine more. BUT TO HEAR THIS STORY I AM HAPPPPY FOR YOU AND WILL KICK THIS ******* TOO! GOD BLESS ALLLLL and I got to go to church last SUNDAY , NEED THAT LOVE OF SPIRIT> Aubbie

[doll face]

I have to agree with Jmjm that you are more than likely feeling crummy from being anemic, and that you should  probably start procrit. I felt like that too when my hemo dropped so low. They usually start people on it when it hits 10.0. I would print as much info as you can find supporting your case and show it to your doctor. Stopping or dose reduction should always be the last thing they do. Good luck.

[jmjm530]

Another authoritative and informative article on Procrt intevention versus "conventional" therapy.

http://tinyurl.com/a2efp

See page "3".

[Tallblonde]

Lorrie,

Jim's offering some great advice.  I hope you can use it to persuade your doctor to keep you on the full-dose treatment.  Good luck to you.  Hopefully this will just be a tiny bump in the road.



Debbie,

Great news indeed!  Congratulations and best wishes for continued good health.

Susan

[rearfang]

I have to agree with what others have said. I had to stop for a week at week 8, but was undetectable at 9 weeks, so hopefully no harm was done, but I worry still. I do think they are right about the procrit. Keep your chin up!

Debbie-- Great news! BTW , where in upstate NY are You?
Lauren

[Califia]

They should have put you on Procrit after that second lab test came back showing a 2-point drop in baseline Hgb.  The hematocrit is out of range, too, which clinches the anemia issue right there.   Now they're going to cause you to play catch-up with the Procrit (if they do prescribe it), which is going to cause absolutely unnecessary physical stress.

Damn it.  Someone should be paying attention and isn't.  

The real stunner is your platelets--the platelets you started with.   116?  Are you serious?   Of course, I might be used to a different lab range...  but my anxiety is that if you started treatment with very low platelets, your doctor's caution is understandable.   The idea would be to give your body a brief rest for a week and then titre up slowly to standard dosing.  This would naturally mean longer treatment to compensate.  

Still...they missed the anemia presenting 2 weeks ago.   You must hold them account for this.  That gives you bargaining advantage, because you'll need all you can get w/ these folks.

You and the doctor and nurse need to communicate ASAP.   Ask questions, take your time and don't let them rush you.   Then make a decision and cause them to comply however you can.

I'm sure that many of the good ladies here would be happy to provide cue cards if you should find yourself in need.

Report back soon?

[Califia]

Looks like you might get renamed Debbie Can Do.     Wow!    You fought very hard for this and won.  That's pretty inspiring for all us Geno 1's still swimming upstream.   I'm truly happy for you and hope that things will continue getting better and better.

[dutch_boy]

I'm so sorry to hear you are going through this stressful time.  jmjm's suggestions to you are very good (as always!).  In my case I had numbers very close to yours at week 4 but my platletes held in there for me which is a big difference between our situations.  I was prescribed Procrit and it took over 3 weeks to finally have it in my posession and those weeks were terrible.  No energy, dizzy, fatigue like I've never experienced etc. I was at 8.5 hemo...the point is that the doctor should have already gotten the ball rolling with your Procrit as you have had a 2 log drop in your hemo a while ago.  What happened with my situation was when the Procrit took effect(about 3 weeks after taking it) my WBC also came up some.  I was told the Procrit only effects the RBC and Hemoglobin directly so I don't know why my whites also came up but it allowed me alot of peace of mind.... I know I wouldn't be on tx still without Procrit.  Your situation is more complex as your platletes are low so maybe this is relative to why your doctor is taking (or NOT TAKING) steps that are STANDARD guidlines for getting us through this tx. You look as though you also will be heading for getting help with your WBC with neupogen but your ANC is a critical factor in determining that. (as jmjm stated if your ANC is below 500 neupogen is in order...ask your doctor what yours is and demand neupogen or to be sent to a hemotologist who will help get you on track.)  Ask lots of questions, arm yourself with knowledge from jmjm's suggested articles above, (search the archives on this site..lots of great info to arm yourself with when it comes to low blood counts) and fight for keeping the tx going as continuous as possible. I wish you well. I understand how frustrated with your blood you must be.....I've been there and it is still a battle!  Best to you nyhepc and keep us posted.  Thinking of you hoping you stay strong.
Scott

[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.

[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

[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

[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

[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

[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.

[nanniegea]

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

[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

[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.

[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.

[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

[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]

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

[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.

[sunspot]

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

Dana

[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.

[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

[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

[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