Possibly Stopping Tx

[KAMO]

Hey there!  Does anyone have any suggestions besides stopping tx?  My latest blood work results are: platelets 60,000; Hgb 8.6, absolute neutrophils 750.  Everything is low!! I have been on procrit 40,000 for 2 months and was pushed up to 80,000 per week for the last 2 months.  Guess it's not working very well. I did have a transfusion in July and less than 2 months later I'm down from 11 to 8.6.   The doctor would give me something for the white count, but that's not gonna help the platelets.  This is my second time treating and I'm only at week 20.  I had a good response with my viral load at week 12 but didn't get undetectable.  And now my doc has cut the interferon from 180 to 135 to see if the counts come up. I'm sure someone has some input........please!

[sfbaygirl]

The blood count drops are common for most of us during tx. I was pretty shocked when I first started looking at my labs and most every one of them were either high or low, when before they were all normal. ANC at 1.3 is cool. At least you don't feel bad when it is low (I hope!) I started taking shark liver oil pills to help raise WBC, it helped someone here...but it hasn't for me so far. Hopefully you will stay where you are or drop just a little. Would they kick you off of the trial if you had to get Neup? As Jim said, his went to 320 and didn't give him Neup. Sounds like you should be good for a while. My ANC didn't start tanking for several months into tx. I think it went low, but not low enough for neup. until then.

[prettydamscared]

Thanks for answering.  I'm in the study and my labs are from my 4 week point.  I've been so focused on hg, haven't paid much attention to anc.  Really hope levels hold out cuz we're not allowed any rescue drugs for 12 weeks....8 more weeks for me to go and anc's already at 1.36.  But, who knows, they may start holding steady now. I sure hope so.  Thanks again, Char

[bobbyullc]

what stage was your liver damage????i hate to sound like a broken record but you may be able to wait for better meds that WILL come along. if you are having real problems and are a geno 1 you only have a 45% chance with the present tx. good luck

[KAMO]

I am getting a second opinion from my oncologist who has known me for 20 years. He knows what's normal for me after knowing me so long.  I am genotype 1 and have a complicated history  Thanks for the input and questions to consider.  I thought. I read somewhere that if ANC goes below 500 that's to low to continue treatment?

[FlGuy]

Not necessarily stop.  It's probably a point to consider Neupogen or Neulasta which are proven to increase ANC's rapidly. Your oncologyst will have an opinion on that in particular.

[jmjm530]

Kamo: I read somewhere that if ANC goes below 500 that's to low to continue treatment?
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As stated above, my medical team rarely uses Neupogen, and then only if ANC is below 300 and stays there awhile. 500 is probably a more common number for intervention, but my doctor has treated hundreds of hep c patients as well as being involved in research and trials. In case you missed it, I posted a link, above, to a study that suggests that inteferon-induced Neutropenia (low wbc) does not correlate with higher infection rates. You might want to print this out and bring it to your doctor.

All the best.

-- Jim

[GrandOak]

I used Neupogen at 700 and 600.  Each time it had a dramatic impact of WBC high normal and ANC a bit over high normal 4 days after first shot. However, over a few weeks everything dropped back to the lower regions again, and I'm waiting to see if like the first time it drops to level requiring another Neupogen round 3-4 weeks after the last.

I guess some of the factors one needs to consider with these rescue meds is that their usage is very dependant upon the health of the patient.  If one is at risk of or has medical conditions which makes it's usage risky, then doc may prefer to avoid them.  As a patient, I would want to know why doc is not prescribing and what alternatives they see to allow me attempt SVR success.

[mremeet]

Hey guys great conversation concerning blood counts etc. I'm trying to piece some of this stuff together so I can start tracking my bloodwork with a better understanding towards anemia. First off "ANC" is absolute neutrophil count right? And that is the same number as WBC (white blood cell) right? I added my neutrophils, lymphocytes, monocytes, eosinophil, and basophils and they equaled WBC exactly. So I'm assuming all those 'cytes' and 'phils' are various types of white blood cells? And together they constitute "white blood cells?" Right now my total WBC is 2,920, which is technically below the lower normal limit of 3,800. Jim when you say 300 to 500 is the lower limit before neupogen is employed, you mean it really can get that low? Wow, that is quite a low number. And I'm confused on what number is looked at for determining red blood cell anemia. I thought hemoglobin (HGB) was what was tracked mostly, but platelets seem to be important as well. Right now my HGB is 16.1 and platelets are 187,000. When would I start to become concerned with these numbers? Appreciate any insight, thanks in advance.

[Snookmiester]

Well, my WBC's where 1.2 for most of my 48 week duration, and ANC's dropped as low as 600....Never did they go higher than 900, and my Doc was never concerned..Didn't even really mention it at all, and told me after every CBC that all my labs looked stable.
Guess ever Doc has different guidlines..
But the reason I assume your Doc is lowering meds, is because of platlets. And a dose reduction is the ONLY way to get those to rebound.

[GrandOak]

Looks like your numbers are pretty good.  For a better understanding og blood work numbers see:

http://www.labtestsonline.org/understanding/analytes/cbc/glance.html

[sfbaygirl]

You mentioned the 'lasta word in the same sentence as try!!! BAD. I suppose if you have to....as i did. Not gonna do it next time though.

[NYgirl]

I unhappily have to agree with the guys above....I really don't know why your peg was cut but since it was AND the fact that you were still detectible at week 12 it does hurt your chances big time at SVR (assuming you cannot treat for 72 weeks IF you are UND at week 24).

If you could have held out 4 more weeks before reducing (and again I would have perhaps dropped one RIBA pill if I HAD to either quit tx or reduce) you could have seen if you were UND at 24.

Because after week 24 the odds of achieving SVR are VERY VERY low.  In fact both doctors I went to would not consider treating me past that if I had not come up UND by then. One is a world reknown NYC doc as well and he is the one who advised me treating for 72 weeks (I was UND between 12 and 24).

What I guess I'm trying to say is...since it seems to me that the doctor has already botched this up (IN MY OPINION OF COURSE)...I might stop and regroup.

Give your body a rest and if you have time see what is coming down the road. I can't remember your stage and grade but - right now you CAN live with the 8.6 hgb if you had to but who wants to?

For that to IMPROVE he should have dose reduced you there - but he didn't.  Makes no sense to me at all.

I was taking too much Riba (I requested one extra a day LOL) and my hemo was horrible all through tx and I was on major epogen - when Dr. J in NY had me drop one riba (at week 46) my hemo went straight up to 12.2 even though I REDUCED the epo to only 40,000 a week!

So you might have had a good shot at succeeding if you had dropped the pill - but not the shot and since there is no guarantee you could ever achieve SVR AFTER week 24 (remember they base on how FAST we get to UND) I think I'd take a rest and maybe try again afterwards.

Or try and get in a trial like Mr. Beagle Bailey who simply cannot do the Ribavirin.

My bestest of bestest to you. This disease sucks it just sucks.

[sfbaygirl]

I believe you have the WBC correct. ANC is part of the total count and is called Absolute Neutrifil Count (sp fog). My doc says I need neupogen (or neulasta, YUCK) when my ANC goes below 1000. It has been down to 400 or .4, usually every 3 weeks. So I get a shot in the office. For Hgb my doc says if it goes below 12 he gives me a booster of aranesp. Most dr's (it seems here anyway) won't give them until the Hgb is below 10.

Those are the two main blood tests for rescue drugs. I know MissMiss had nemenga for her low platelets, at 40, but not many dr's do this I hear. Neumega has brutal sx. Neulasta has brutal sx too!

[prettydamscared]

My ANC went from 2.61 to 1.36 in a week, that would be from week 3 to 4.  Should I be concerned about that?

Thanks, Char

[FlGuy]

You're right.  Neupogen good. Neulasta bad.  Have you been able to avoid the 'lasta?

[mycoldfeet]

I'm new to procrit and a couple other "rescue drugs" but isnt there something besides procrit? I was reading that one hospital changed protocols from procrit to Aranesp, I just put in procrit vs.... in search engine and thats what come out. Heck I just want to help you get through tx, most here know more than me, Seems like there is something a bit newer out but I don't know the name, one of the reasons I read was procrit wasn't as much trouble to regulate. Good luck.... hell you might bounce up with the procrit heard it takes 3 to 6 wks to start working

[KAMO]

I'm genotype 1 and stage 1, I had leukemia in 1985 and lost 2 family members to liver cancer.  Anyway, I got a response from my oncologist who also felt my counts weren't terrible.  Lowering the interferon will help bring my platelets up.  It's only been one dose so far that was lowered. But I will be calling the doc to get back to the original dose until it's absolutely necessary to do something.  My oncologist wants the hepatologist to call him if they insist on going lower.  

Thanks to everyone for all the information.  I have a better understanding and a whole bunch of questions for my hep doc. It's so frustrating - I guess it just shows how much "they" still need to learn about this virus/disease.

[KAMO]

Thanks!  That will be one of my questions to the doc.  Since I have been on procrit for over 4 months and it doesn't seem to be working very well - there has to be something else we can try.

[sfbaygirl]

Yes, the drug is called Aranesp. It is the same as procrit, but is time released, so you are getting more of the drug all the time. kinda like pegalated interferon/vs. interferon. It was nice for me, b/c I didn't have to go into the hemo as often. It lasts for 2 weeks.

If it is anything like Neulasta ( time released Neupogen) Aranesp may be stronger and help keep that Hgb higher. I sure would give it a try if you aren't getting results from Procrit. Neulasta is so strong it knocks me down for a week. I have heard neupogen isn't so strong and sx aren't bad, so I will try it. I

I never had any sx from the Aranesp. All it did was help my anemia go away and feel better. I no longer need it after several months of it. My Hgb is holding at 12.

[sfbaygirl]

No, I would not worry about your 1.3 ANC, or the drop, until it goes below 1.0. That is when my dr. wants me to come in for a Neup/lasta shot. You may stay at that level or go to 1.0. I would just check your labs for the ANC and make sure it doesn't go below this.

[FlGuy]

From what my experienced doc's view, you don't have an issue with either ANC or platelets yet.  His instruction to the tx doc were to allow them to go to 500 (then neupogen for anc's) and down to 30 (30,000) for platelets.  The issue seems to be with hgb, for which you're already getting procrit.  I don't see the reason he cut back on the peg, should have been the riba if anything.  And, not cut back on the riba unless the anemia is a serious issue in your fuctioning. Actually, you seem kinda normal for someone in your place in tx.

[jmjm530]

Of course I don't know your history, but that said, except for your hemoglobin the rest of your numbers don't see to warrant a reduction in inteferon. Many here have continued on full meds with platelets less than 60,000 and ANC less than 750. My ANC dropped to 320 at one point and they still didn't put me on Neupogen. Speaking of which, if they were that concerned with ANC (which again my doc wouldn't have been) why didn't they consider Neupogen before reducing your peg? So I guess maybe a another discussion with your treatment doctor (or another medical opinion) might be in order.

Assuming you're a geno 1, you do realize that since you were detectible at week 12, you probably will have to treat a total of 72 weeks for a decent chance of SVR. That's assuming you become non-detectible at week 24. I understand you are committed to treatment at this point, but that's something you should weigh in the context of the difficulties you're having, especially if you do not have significant liver damage.

All the best.

-- Jim