ANC drop. Again. (or ) Life Sucks then it Sucks More. /Att:: Goofy

[jmjm530]

The problem with frequent labs seems to be frequent bad news. I thought my ANC had bounced back, but this week it bounced the other way to 472 with WBC at 1.4. My increased Procrit also seems a little slow on the draw and remains in the low 12's in spite of two weeks of increased Procrit.

Goofy...was it you that mentioned your doctor doesn't intervene with Neupogen until ANC is below 400?  Really not thrilled about injecting any more drugs into my system. Also wondering if anyone else had similar problems mid-treatment with decreasing ANC. My NP led me to believe that it doesn't happen that often later in treatment and they rarely use the stuff. I guess they might have to dust off a few vials. :)

-- Jim

[Forseegood]

I was just telling Califia today how humbled I am by her, and you and so many others on this board and many others. You just keep going no matter what with true bravery and good humor, even though I bet it can get pretty harrowing sometimes.

As silly as this sounds, I liken it to a soldier on a scary maneuver, you guys exhibit so much valor and strength of character. I hope all this pays off for you in a big way someday, and you'll finally be post tx and on the SVR train. Best of luck and good wishes to you, and anybody else reading this post....

[GoofyDad]

At 2x toxicity, I suppose I can only hope for the best and keep fogging a mirror each morning just to be sure! ;-)

[FlGuy]

As you already know, having a clue about what's happening with your body, anticipating the situations and awareness of solutions is important to us under tx.  Jim, I have you and others here to thank for that education and the sources that we discuss in this forum.  I'm able to speak lucidly with the docs and in return they take time to slow down the assembly line, and the whole process runs on an assembly line,  when I need to speak or understand.  Im very fortunate in that respect.

[jmjm530]

Sounds like a very good system. Glad you've had no dose reductions so far.

-- Jim

[FlGuy]

The Gastro, Hemotologist and I have have a plan.  I go for CBC weekly, the hemo makes all blood adjustments (procrit, neupogen).  The Gastro gets the CBC weekly but he deals with the virus, alt, ast and his things.  I have a pre-set set of scripts from the Gastro that I take to Quest on schedule (liver functions, uric, TSH, PCR etc).  So, all I do is stay on schedule and give blood, get results.  The main part of the plan is that no dose reductions without all 3 in agree.  Hasn't happened yet.  The Hemo gets after ANC at 1000.  At this point I'm predictable - if the ANC is dropping, it's not going to stop dropping.  So, I probably get neupogen sooner than most.

[FlGuy]

The Gastro, Hemotologist and I have have a plan.  I go for CBC weekly, the hemo makes all blood adjustments (procrit, neupogen).  The Gastro gets the CBC weekly but he deals with the virus, alt, ast and his things.  I have a pre-set set of scripts from the Gastro that I take to Quest on schedule (liver functions, uric, TSH, PCR etc).  So, all I do is stay on schedule and give blood, get results.  The main part of the plan is that no dose reductions without all 3 in agree.  Hasn't happened yet.  The Hemo gets after ANC at 1000.  At this point I'm predictable - if the ANC is dropping, it's not going to stop dropping.  So, I probably get neupogen sooner than most.

[FlGuy]

The blood taking is just like in a lab. Venus blood in a vacuum tube. The machine look like a printer.  A little door opens, tube goes in, the machine sends a probe into the tube, in a about 45 seconds, voila!  I'll get the name of the machine monday, there a manufacturer's label right on the front.  Gives 16 specific reading (WBC, PLT, HGB, RBC - all), patient ranges, and histograms for WBC, RBC, PLT.  Long time ago I talked to the tech about the machine.  They do regular calibrations and test it against known sample values.  Also talked to the Quest people (when in for a PCR) and asked them how they process CBC's.  They said they use CBC machines at a central location in this area.  Who knows the absolute accuracy of any machine?  I figure that even if it's 10% off - that's ok for the decisions I need to make.

[jmjm530]

When you say "if meds are required, they're in the next room" -- are you referring to Procrit and Neupogen or anything else?

I thought about seeing a hemotologist (still might) but I know it will be stepping on my hepatologist's toes (which I already have more or less used up my quota. :) )

The advantage, of course, with the hemotologist is this is their speciality and the special services you describe. The disadvantage, as I see it, is that my hepatologist has treated literally hundreds (many thousands) of hep c patients and bases intervention on this very specific population group.

Also, from what I've read here and on other boards, it appears that that those that use hematologists tend to get quicker dose reductions/drug than those that don't. Not sure how this holds in your case. At what ANC level does your doc intervene with Neupogen?

-- Jim


-- Jim

[jmjm530]

I thought the office machines used finger pricks? Sounds like yours uses venus blood.

Do you happen to know the name of the machine and now accurate it is compared to a commercial lab?

I have heard finger-***** CBC's are not as accurate but your system sounds very good. Like my doc wants me to do an ANC on Friday but of course the results won't be ready until Saturday when he'll probably be playing golf. :) I might as well just wait until Monday then and get results Tuesday. With your system, we could have drawn blood and made a decision the same day.

But the next best thing to your own hemo-oncol is setting up a system to get lab results the next day. This is especially important regarding Hgb during the first six weeks when anemia tends to raise its ugly head.

[FlGuy]

No doubt, quick lab results and immediate action are critical. Each Mon I have a CBC in the Hemotologist ofc. Process is: sit down, blood draw (using that butterfly thing), without taking a step nurse pops it in CBC machine. Out pops 2 copies of the report, we both look, decide if any meds, then I'm outta there. If I'm in the bldg more than 10 minutes it's a lot.  If meds are requied, the stuff is in the next room.  Since it's also oncology there is always a Dr. to read results and make a fast decision, if needed.

I you are able to use such an office, like a hemo-oncol with one of those machines you may be able to cut some time out of your routine.

[tina-b]

Ferritin levels over 1000 are toxic. But hey, so are the meds.

Glad your feeling better already ;)

[GoofyDad]

Cougar says, "We really need to stop doing that to ourselves, it's like with our blood chemistry going all crazy - we might just be victims of spontaneous combustion one day"

LOL, Cougar - I have a mental picture of me walking towards the office one morning and Ka-blam. Like the big guy in Monte Python's Meaning of Life. Goofy splatted up to the third floor windows!

You're right though. We do more to ourselves fretting over this and that. But who's going to stop? Not me, I'm afraid.

Well maybe I'll give it a go. Tomorrow's my 4 wk VL & maybe I'll just scratch off that FAX PATIENT sticker and not worry about it. Let whatever comes, come. Discover strength from within. Go with the flow. Find my center. Accept that which I can't control. Like the Lotus flower, be one with the wind.

And maybe the Veggo will have us all over for a weinie roast in February!

[LvdByGod]

jim, i'm so sorry to hear your still enduring all this...i pray your numbers look good on next dr visit...i hope you don't need the nuep but it will be good to do what ya need to in order to give yourself the best chance of clearance in a safe way...remember all this will be over someday and to have an SVR in your pocket will make it all the sweeter...some day it will be a distant memory!!!

my prayers are with you jim, God's wisdom to you...

sandi

[GoofyDad]

I got a chance to read <a href="http://www.mercola.com/2003/apr/2/iron.htm
">the artcle</a>. I do appreciate your posting it, though I couldn't find mention of toxicity levels for ferritin. The author did suggest that high iron causes HVC and that interferon is "absolutely not" the solution.

Let's just say the Goofs feeling a little better already :)

[dutch_boy]

Like so many others have said I'm so sorry your facing so many challenges.  You are there SO MUCH for everyone on this sight and I only wish you were having an easier time.  If this helps at all I've been in your situation 3 times myself and everytime they either threaten to get me going on Neupogen or dose reduction (or transfusion).....and everytime it looks like the path is going to be bumpy my counts bounce just above the "panic zone".  You too have been there I know.  I certainly hope your numbers move upward this week and gets you out of the danger zone.  I know how tired you are of needles......we are in the same boat...but worse comes to worse the neupogen is quick and will help you.  This whole blood game is so confusing as it seems to have a mind of it's own....this week my hemoglobin dropped again to 7.2 and I'm on 60,000units of Procrit/week.  It seems to have ups and downs triggered by somthing I have yet to comprehend.  In the meantime my ANC is teetering just above 500.....doctor won't intervene until I hit 500 and my hemotologist also is in this camp of waiting till 500. I know none of this helps you but at least you know someone else "out there" is going through similar blood games as you are.  We both are gettting through all these hoops and challenges and the numbers of weeks left for both of us is getting smaller and smaller.  I'm now down to only 12 weeks and my blood hopefully will just hang in there a little longer.  Thinking of you jm and I hope you bounce upward as you have before.
Scott

[jmjm530]

Thanks again for the support and advice. I'll be watching my ANC closely and have no problems with Neupogen if necessary.

Fortunately, unlike Procrit, Neupogen works very fast so I suppose the trick is not to get too far behind the Eight ball but on the other hand not to pull the trigger too soon. Sounds like my doc will follow Brooke's and Goofy's protocol and intervene around 200.  For now, excepting a new sickness, fever or an infection, I'm OK with waiting or I would have insisted for Neupogen today. I've had two bounces already with my ANC and hopefully will get another.

I think I was just bummed out that my Hgb and ANC which up until now had stabalized are all of a sudden falling. It's becoming apparent that staying on treatment at full meds is a lot more than will power or even medical intervention. Sometimes it's the luck of the draw -- the genetic draw.

-- Jim

[Healed24]

Hi, Jim. Thanks for the advice you gave me (personal and medical) I really appreciated it (I really needed it). Okay, on a personal note I think you should go for the neupogen if you can stand another shot. The shot is actally really easy to give. It doesn't sting like Procrit and the needles are really small (personally I hardly feel it). The only side effect I get is a nasty little rash at the injection site and headaces (although the headaces could be from the Procrit or Peg). Other than that it help keeps me on the meds (eventhough as you know I'm still on a lowered dose). An ANC of 400 is pretty low, but not so detrimental that you have to walk with soap and sink connected to your hip (hahahahahaha). N-E-Way, My doc waited until my ANC was 100 before giving me neupogen (although in my case, my ANC dropped from 2000 to 200 at week 1 after my first shot of pegasys) and he wanted to wait and see if my ANC would rebound,  (unfortunately they never did and I ended up taking neuopgen anyway). Although I thought that was kind of low, I didn't protest because like you I didn't want anymore drugs in my body. If I had known what I know now I would have demanded that he give it to me when I had the first drop, but I never did get an infection. I hope I don't offend you (or anyone else on the board) by saying this, but in my  case I don't have any medical problems other than the HepC and I am 26 with a pretty good immune system, so that could be one reason why I never got sick. Personally I wouldn't recommend that anyone let it get that low before interving with Neupogen, but in my case it didn't hurt me to wait. On the other hand if your ANC has been dropping for weeks it is unlikely that you will get a signifcant boost without meds (sorry to be negative). Well I realize this is getting kinda long and I don't want to rattle on, so I'm gonna go. I hope this helps you, as you have helped me so much.

BROOKE
GOD BLESS, AND YOU (AS WELL AS EVERYONE HERE) ARE DEFINATELY IN MY PRAYERS.

[jmjm530]

Just kidding about the frequency. I've been pricked more than a porcupine has quills.

But the real key is not just frequency but getting the results THE NEXT DAY. Why lose an entire week waiting for lab results when you can act on them RIGHT AWAY. Regardless of what other tests are ordered, your CBC should be ready the next day or even the same day depending on the lab. I have Quest Diagnostics fax me the results directly. The other method is to train someone at your doctor's office to work with you.

Don't know your Hgb or Procrit history but hope things work out with your lower Hgb and ANC.

-- Jim

[friole]

Just finally got my CBC from last Thursday - my lowest ever -- hgb, 11.2, and ANC .7.  Will call the hemo doc tomorrow and get another one, since it's been a week.  Here I thought I was gliding.  Personally, Jim, I think frequent blood counts are a good thing (to quote Martha)
Kathy

[cougareyes]

Sounds like you hit it, but look at what you put yourself through the last couple of days. We really need to stop doing that to ourselves, it's like with our blood chemistry going all crazy - we might just be victims of spontaneous combustion one day.    Peace

[GoofyDad]

Veg - Non-a non-b jaundice episode in 1980-81 would appear to be the onset.

Tina - Thanks for the link. I'll read it whan I have a moment.  ANC, WBC, plateletes, RBC, hgb all dropped like lead balloons.

Coug - It looks like iron stain may not have been completed at bx. See my earlier rant on that, or better yet, don't. Iron studies were normal 12/04. Assumption is that high ferritin is a byproduct of riba induced anemia. Riba literature apparently warns of false ferritin readings. At time of ferritin reading, hgb had dropped 4 pts in 3 weeks.

[cougareyes]

I didn't see if you posted your diag of your iron stain on your biopsy. Most consider very high ferritin levels anything over 1000. Yet many say that through diet it would be vey unlikely that you would get such high readings, unless it is genetics. And cirrhosis, hcv does play a role; but if it wasn't there at your biopsy; I would be very curious to see how it got so high this early in treatment. There is a form of genetic homochr*****(don't know how to spell it)high ferritin levels. Also some forms of anemia will cause ferritin to rise(to a high level). Not sure where you are on that side of your blood, but it might be something to look at.   Good Luck

[tina-b]

Thanks for the link, when I get time I will read it all.

[tina-b]

google "toxic levels ferritin" click the first link that pops up.

This is the link to copy and paset

http://www.mercola.com/2003/apr/2/iron.htm

I hope I don't get in trouble for that.


"Yet, they seem to be treating me more agressively and the nurse says my reactions to treatment are suggestive of cirrhosis."

What the devil does that mean? "my reactions to treatment are suggestive of cirrhosis" How are you reacting to tx?