Not time for rescue meds yet...

[medicmommy]

Well, saw the liver doc today...I'm officially on "doc watch" because of HGB, HCT, WBC counts trending downwards...Doc is optimistic the drop will slow and level off by week 6 of treatment...And Procrit won't be necessary...Labs to be repeated weekly...No adjustments in Interferon needed as yet...Week #4 vl on Monday!

[fuzzy1dar]

Sorry to here your levels are low...what is your hgb, wbc?  Mine hgb dropped to 10 after 4 wks tx.  Went up to 10.5 as of 3/10/08.  Waiting to see where I'm at now...going on #9 friday. What geno are you?  I'm 2b on riba 800mg/day and Pegasys.  Good luck on your monday appt.

best wishes,
Darla

[Forseegood]

at least you know the cr*p is working! best to you! let us know okay???

[Wassup]

Hi Sweetie, sorry you're anemicish.  Hope you will be well enough to enjoy your Easter.  Hope you get to feeling better VERY FREAKIN SOON.  Many Hugs, Ant B

[charm27]

Im 10..5 after 5 months and still holding.  It might drop more and it might not.
Let us know if anything changes.
Glad no rescue drugs yet!

[FlGuy]

Generally speaking, it's the riba that affects the hemoglobin levels and the Peg that affects the absolute neutrophil counts (which is the WBC component that most doc keep an eye on).  One other thing, for most people who do not have other issues hgb and hematocrit (hct) usually rise and fall in proportion to each other.  Usually the hct is just about three times hgb.  So, if you hgb is about 10.5, hct usually around 31.  If 12.5, usually around 37 - and so on.

[nygirl7]

Usually the docs won't give you Procrit unless you drop underneath 10.  Once you do they get more liberal. Where are you right now?

The Procrit is extremely expensive.  I was on it twice a week and the box only contains ten vial. The cost is $6,000.  Yes six thousand dollars. For five weeks medication. That makes the regular meds of SOC look like nothing.

Right there you know why they don't want to give it to us unless they have to.

Once you get down to 9...you'll fight with the doc for your life to get it.  Oh by the way it's not just the number - it's also how fast you go down that matters.  Eventually your body will adjust to being in the 10 area...

I lost six points in just over a week and that was my undoing.  It was one of the worst things I"ve ever gone through in my life and I could not have continued treatment without the Epogen.

Good luck!

[medicmommy]

Well, in 2 weeks (weeks #2/3 of tx) my hemoglobin dropped 2.5 points and the hematocrit 7 points...As of last draw I was at 10.9 for hemoglobin and 32.0 for hematocrit...No other medical probs besides the hep going on (that I know of!)...I'm hoping the drop will start slowing down now, and that low energy truck won't back over me so frequently!  The insurance Co already approved the Procrit if it's needed, so no wait if the time comes...
Fussy1dar- I'm a 3a, so 24 weeks of tx...On 800 mg of riba and on 180mcg of Peg...In week #4 of tx...I started with a 16,000 vl pre-tx (original was 463,000 brought down with naturopathic stuff) so, I'm optomistic my week #4 vl will be UND! (I hope, I hope!)

[nygirl7]

They won't prescribe it unless you go under 10 most likely.  I never really heard of it just slowing down out of nowhere before - but I guess anything is possible.  

I hope it happens for you!!!!!!!!!!!!!

[medicmommy]

I think the doc was taken off-guard by my..."So, when do we start talking Procrit, etc...?" LOL  I believe the "Oh, it'll slow down and when it does, your body will adapt better..." statement may have been an attempt at reassurance...After comparing notes with you all here,  I realize this will probably get worse before it slows or gets better...At least I have an idea of what to expect and the stuff that goes with it...I'll become more insistent (squeaky wheel) if/when needed...You all are such a wealth of info! Thanks!
Fl Guy- Question on Neutrophils...So, if they are low...Means difficulty fighting off infection if you get one? Or presence of infection and too many being destroyed? Or just not enough being made? (meds affecting bone marrow)...

[mikesimon]

Typically, a low white blood count is associated with a decreased ability to fight infection but according to a recent statement on the Clinical Care Option decreased WBC which results from treatment doesn't seem to have as serious an adverse effect on our ability to withstand infection as it does in other cases of low WBC. Bone marrow suppression is the reason for the low WBC.
Mike

[nygirl7]

Just so you know - your neuts can go back up and down all of the time without any assistance on their own...hopefully this will happen for you.  When mine got low enough my doc said the same 'well let's wait and see if they go back up" and you know what...they did I never needed to go on the neup.

That was fine with me - human pin cushion not being a fun experience!

I hope they do go back up by next time for you!

[FlGuy]

Ditto to what Mike and NYG said. Looking back to the spans of time that I was on tx (and neutrophil challenged) was about the healthiest I was in a long time, if I exclude the hcv and the tx effects.  No colds, no flu, no lingering wounds or infections. I suspect that it had something to do with the charged immune system brought to us by Peg.  In any event, and based on the neutrophil level there is no reason to suspend or reduce treatment.  Neutrophils are easily fixed if they get below the level that you doc has determined to be 'actionable'

[lmr28]

So glad you are only being "watched"!  That is great news.  I'm also relieved that they are doing regular CBCs!   I think that is all very encouraging.   Sounds like you are doing all the right things!
Take care of yourself!
~l.

[medicmommy]

How are you doing? Feeling any better? No doubt, this is definitely a roller coaster ride...Sleep well tonight!

[lmr28]

I'm up, I'm down.  I'm down, I'm up.  Wow.
Yesterday was one of my best yet, today was hell.  Go figure.  I feel good and go right past my limits and overdo it!  Every time I say I am learning my limits, they change!  lol!
Hope you are taking it slow!  I am back to work on Monday.  ;-(  Spring break zoomed right by.  I sure do better pacing myself when I am not working.  I am trying to come up with some plans for a rest mid-day or a reduced schedule when needed.  The days were sure getting LONG before this past weeks reprieve!
Take care!
~l

[medicmommy]

If it helps...Even with the labs still sliding, I'm starting to learn to pace myself (tough lesson, there)...and it seems to be getting a bit easier as time progresses...It is unfathomable to me the thought of working 12 hr shifts and picking up 300 lb people all shift...There's just no way...I'd do one lift, and that would be it! Pooped!  I'd imagine finding the stamina to mind wrestle kids is no different...Maybe, as the changes become less, you'll be able to work out a pace that you can live with, and still have some sort of livable income...Hang in there! Enjoy your weekend...

[spcecst2]

Here is a link to some good info

http://www.chemocare.com/managing/low_blood_counts.asp

--ANC number is important when talking about wbc and infection--
ANC greater than 1500 No increased risk of infection
ANC 1000-1500 Slight increase in risk of infection
ANC 500-1000 Moderate increase in risk of infection
ANC 100-500 High risk of infection
ANC less than 100 Extremely high risk of infection

[medicmommy]

Thanks so much! I can't believe how much I've learned about labs that I THOUGHT I knew more about...LOL I'm writing the link down so I may browse the site at my leisure. (Not to mention, pass on the info!) Very good to know...