my labs what do you think

[lauraisstrongerthenHCV]

Hi guys I just got my labs back and my Dr. said they are ok; once again, but I dont believe that at all!!!

two weeks ago they were:
WBC- 2.6
RBC- 4.05
HGB- 11.5
HCT 33.5
platlets- 106
ANC - 1.0

this week they were:

WBC- 2.6
RBC- 3.85
HGB- 11.3
HCT- 31.5
Platelets- 88
ANC - 1.o

the platelets and the HCT dropped a lot and I dont know when it is time to worry and I swear he dont read my labs!!!!! He told me to continue with the meds and I want to but not if is going to be bad for me!!!  Has anyone else had numbers this low and still continued with the meds?????

[sfbaygirl]

Your Hgb is going down. I would ask for procrit ASAP. My doctor gives it to me at 11+. It takes several weeks to work, so by the time you get it, it will take more weeks. Ask now!

Your ANC is 1.0, that is when my doc wants me to get Neupogen/Neulasta. From studies about Hep C, we can go lower than that and not get infections. I would still check out when your doctor will give you these meds, at what number.

Do you go to a GI or a Hepatologist. Most GI's that I know don't give the procrit or neupogen. You may have to go to a hemotologist. Call and tell the dr. you are concerned about these numbers and would like to know if/when he will prescribe these rescue drugs. What week are you on?

[lauraisstrongerthenHCV]

tomorrow will be week 11.  I see a GI and he has never mentioned rescue drugs!!!  I am not even sure he is aware of thier use in HCV patients who are taking pegasys...because if he did then he could have let me stay on 180 ug and 1000 mg instead of lowering my dose to 135 ug and 800 mg of copegus when my labs were low in the begining!!!!  I should be a little upset by this b/c it greatly ruduces my chances of svr but by the grace of god I was UND at 4 weeks even with dose reductions.  So I cant complain!!!  Thanks for your comment...I kind of figured I should be getting on the rescue med pretty soon!!!  How do you find a hemotologist?????

[lauraisstrongerthenHCV]

oh nevermind hepatologist........I read it wrong LOL but still how do you find one of those???

[jmjm530]

The short answer to your question is "yes". Your numbers are not bad at all, in fact quite good in an absolute sense.

Regarding Procrit, it really all depends on what your pre-treatment hemoglobin is, how you feel, and other factors including medical history. But very generally, unless you've had a 2-3 point drop in a couple of weeks or approx a 3-4 point drop from pre-tx baseline, you may not need Procrit at this time, especially if somewhat asymptomatic. Hgb 11.5 isn't nothing to be alarmed about in itself and hgb 11.3 two weeks later is almost an insignificant drop.

Your ANC is also quite good. Many doctors don't intervene until ANC drops to .5 and some, like mine, rarely intervene. I was ANC .32 and they didn't blink. Two weeks later my ANC was over 1, all by itself. ANC has a tendency to bounce up and down. Platelets normally drop during tx and you're not in the danger zone.

If you have confidence in your doctor, run your concerns by him. If not, seek out a second opinion from someone you have more confidence in.

-- Jim

[sfbaygirl]

Depending on your insurance you need a referral by your dr. I don't think you can just call one and go to him. I got my referal through my primary care doc before tx. Thankfully, because my GI wanted me to decrease my meds too. I didn't and went to the hemotologist. Call your GI, PCP and ask for a referal to a hemotologist/oncologist. They are the dr's that deal with blood. Are you getting weekly labs? You should and if you don't have a hemotologist and your ANC OR HGB go down you may have to go to the ER to get help. The anemia from the Hgb can be brutal. Some here have gone as low as 6. and had to get a transfusion. This is dangerous level! The ANC could go as low as .3, but I wouldn't wait that long! I usually call when mine is below 1.0. It is 1.3 now and I will wait another week and see.

[jmjm530]

Just read your follow-up posts. My prior response was only to your first post in this thread. Based on what you said later, you probably don't need rescue drugs given your numbers and dose reductions -- what it appears you need is a second opinion from an liver specialist (hepatologist) to re-evaluate your dose reduction and perhaps manage your treatment from then on.  

All the best.

-- Jim

[lauraisstrongerthenHCV]

It's really not about trust...well I just feel that my doctor is only human...and all humans screw up or get lazy and drop the ball.  I wish I had the time and money to seek a second opinion every time my labs came back but I dont...thank god I have all of you :)  I value all of your opinions b/c unlike him you have been through it and you know when it is time to worry.  I just want to make sure that my numbers can go lower before I worry myself to death. Every week on shot night I am a nervous wreck and I swear each time that this is going to be the shot that does me in... like all my levels are going to drop to 0 in my sleep...I know it sounds crazy but I think that is a sx of this med too... j/k I was always this way LOL.

[jmjm530]

Non-detectible at week 4 is excellent, especially if you're a genotype 1. Perhaps the dose reduction didn't make any difference. Still, it comes down to how much confidence you have in your doctor. Things may come up in the future where you may need rescue drug intervention. You want to be with someone who will take appropriate actions. Is this your current doctor? No one here can examine you or write you an rx for Prcorit. In any event, definitely get a sensitive week 12 viral load test to make sure you're still non-detectible.

Good luck.

-- Jim

[lauraisstrongerthenHCV]

yes I am geno 1...and I have read on here before about someone being undectable and 8 weeks later having a high VL so I am going to ask my Dr. to do another PCR at 12 weeks like you suggested. So in a nut shell my numbers are slightly low and no need to be concerned and I should just keep taking my meds as usuall!!!  That is exactly what I wanted to hear!!!  Week 11 here I come!!!

[sfbaygirl]

I don't know when you take your labs, but I think it makes a difference. I used to take them the day after my Inf shot and they were always low. Now I take them the day of or the day before and they are not low enough for the rescue shots.

Don't worry, sorry to make you feel it is an emergency to get rescue drugs. I just think you need to have a plan in place in case you need them. Do you have insurance? You could just call and leave a message or a fax with your questions about the rescue drugs. It is good to have them set up ahead of time, if you need them.

I thought your labs were a week apart, so hgb going down a bit in two weeks isnt' bad. Jim is right about how you feel when they are low. It is good you are watching them and I still think you need to get a hemo or pin your dr. down on what he plans to do, besides drop your meds, to get your levels up if need be.

[lauraisstrongerthenHCV]

OH NO NO no!!!!  you did make me think it was an emergency!!!!  I understood exactly what you meant....it is not necessary at this stage but you can always take precautionary measures.  I think you are right!!!!  I will call tomorrow and see what he is going to do if they get any lower.  My real concern was "how low can they go"  All the way to the floor j/k now I have that song stuck in my head!!!!  but I really just wanted to see if anyone else had similar numbers and still continued with the meds.

thanks for your reply

and I take my shots on Thursdays and get my labs on Monday or tuesday so that I have the results by thursday.

[jmjm530]

Best to take your viral load test the day before your shot or the day of your shot.

For example, your week 12 viral load test should be taken the day before your 13th shot, or the day of your 13th shot but before you actually take the shot.

That way you're getting a "trough" reading and less chance of a false negative. Your other labs like blood counts can be taken any time. Also, if you're not getting it already, ask your doctor for a very sensitive Viral Load test. Sensitivity should be 50 IU/ml or less.

-- Jim

[lauraisstrongerthenHCV]

I have a feeling my doctor will not willingly let me get a 12 week pcr...but I am going to make him...if not I wonder how much they cost???  not that I have any extra money!!!  Anyway I am glad you let me know when to take it b/c I had no idea.  I will take it the monday after my 12th shot.  Oh and the last PCR I had was sensitive to less then 10/ml  so I would like a less then 5/ml if labcorps has that one!!!

[jboyhk]

The tests are about $350.

[GrandOak]

HCT and Platelets have very little bearing.  Although the platelets are looked at to make sure a clotting risk is not developing or if one is considering surgery in the near future.  FWIW, my platelets have been around 70, give or take a few points, throughout tx.

The Hgb and ANC seem to be the more critical measurements which are closely watched for me.

At any rate, all your numbers, while low, do not appear to be excessivly low yet and something to be concerned with.

[lauraisstrongerthenHCV]

no I mean I will get the regular labs on that monday and the PCR on WED or Thursday (shot night)  I did understand I just didnt write it correctly

[lauraisstrongerthenHCV]

well that is about $340 more then I am willing to pay LOL

[jmjm530]

I'd be surprised a doctor who does 4-week PCRs doesn't automatically do a 12 week, but always good to double-check.

If for some reason he won't, by all means get one on your own, maybe your family doctor can write you a rx. $350 sounds ballpark (you may have to negotiate with them on the phone) if you have to pay out of your pocket but 12-week PCRs ordinarily are paid by insurance companies. If not, you might also want to call Quest Diagnostics, tell them you're paying out of your own pocket, and ask how much they'd charge you for the HEPTIMAX test. It's also a very good one.

You said you will take the test the Monday after your 12th shot. I'm assuming then that you will take your 12th shot on Tuesday night and the test six days later.

Meanwhile try and relax, a negative 4-week viral load test that goes down to 10 IU/ml is quite excellent!

-- Jim

[jmjm530]

Just read your post "C16". Yeah, that's correct.

[lauraisstrongerthenHCV]

well I try my best not to worry about it. I am a true believer that everythig happens for a reason and this wont be the first time I have said that HCV has helped me to appreciate life so much more and to not take the little things for granted. I used to worry about my shoes looking new or getting a new purse and stuff like that but once you start fighting for your life you truly realize that material things dont matter...I mean I could have a million dollars but if I need a liver and I cant buy one what good does it do.  I pitty all of those who used to be like me and worry about the stupid stuff in this world when they should be worrying about thier health... besides for the ribarage episodes and my major overall bitchiness b/c I am tired and sick;;;; HCV has helped me to become a better person...funny hunh?????

If I have High VL at 12 weeks then so be it but I am honestly not concerned about that....God is hearing way to many prayers for me,,, to let me down!!!!

[bobbyullc]

yes , a 4 week und is great. you are on your way. my readings were similar to yours for 48 weeks and i had just the normal sides we all have which really stink. keep your eye on your counts but so far so good.
bobby

[Kalio1]

Keep in mind some of these blood values fluctuate. Many people use "rescue" meds. to counter the problems caused by the tretment meds. It is all part of the game of this treatment which is a form of chemotherapy. To walk the line between the tx effects sometimes takes more drugs and sometimes takes a reduction in meds too. If people just stopped the tx when the issues arose rather than try to counter the side effects then the tx was all for naught. It is a balancing act.

[Sally01]

I would be happy to have the numbers you reported.  I did not receive Procrit until HBG was 8.  Insurance would not cover Neupogen until WBC< 1.5 and my platlets have run 60-80 throughout treatment.  I have been in treatment over 1 year.  I know you are concerned but some of thoses lab values can flucuate more than others and still be acceptable.  Great news that you test UND

[lauraisstrongerthenHCV]

thanks to all that responded..........You really give me the strength to keep on!!!!  With out all of your support I know I would never have made it to week 11!!!!  Thanks

[NYgirl]

Procrit/Epogen costs $6000 for ten vials so they dont want to give it to you unless you absolutely need it

But basically your numbers don't appear bad to me at ALL, in fact at this point I think you are VERY LUCKY to have such high numbers!

Many of us completely crashed and burned BAD - since your drops are also very slow...that is a good thing for you.  A sudden and drastic drop is the hardest to deal with but if it's "slow" your body has time to acclimate.

Most doctors will not consider Procrit/Epo until UNDER 10. Most insurance won't pay for it before then.

My doctor also would not prescribe for my whites until .5 - although I went down many times...we never needed to go on them - they can rebound completely on their own.

And any less shot is a good thing!

[lauraisstrongerthenHCV]

so even though your numbers were extremely low you still continued taking the meds????  Did your doctor ever make you take a break or lower your dose?

NYGirl you said that your WBC was .5 during that time were you still taking pegasys?  Did you have any diff. sx???


sally did you have any sx when your hgb was 8????  just want to know what to watch for,

laura

[GrandOak]

Amen and ditto on the testimony on how HCV has changed your perspective on the importance of life and the shift from the importance upon material things which are only for a season.

I have tried to also understand what I am to learn from dealing with this insidious disease and it has opened my eyes in numerous ways to gain a glimpse of understand as to what others suffer through with a variety of other illnesses.

[Sally01]

When my hbg was 8 I was very tired and listless.  Unfortunately it takes a little time between getting numbers like that and receiving the rescue drugs. Just have to take it easy and rely on those around you to understand. I did have to have 2 transfusions for low hbg and I felt almost immediate relief.  At no time were the Peg or Riba stopped or reduced.  I think my doctors really beleive in pushing forward to eliminate this virus. Just keep beleiving that someday it will be worth it.My riba was inturrupted only once for respiratory issues. My VL came back the next week where it had been UND.  I am back on the riba and test Und again.  Try to stay on the tx if you can