Rising ANC with 1/2 dose Neupogen

Dear Forum Friends

Some of you might remember I was struggling with the decision to take 1/2 dose of Neupogen a couple weeks ago.
My doctor said yes, my hematologist said no, My doctor's nurse questioned the idea....

Well, I decided to go with my doctor...and as of this week my very low 600 ANC is now 1500.
(remember we had tried  (2) full doses of neupogen and I thought I was going to die and barely got to 900ANC )

My doctor seemed shocked, but pleased, and I nearly fell out my chair as they entered the exam room mapping out a plan of treatment.

My doctor wants to use my case in a study or paper I agreed. If my trauma can help someone else that would be great.

I'm being treated at a teaching hospital by a doctor who's rather well known for treating Hep. C.

So, maybe what I've had to deal with might help someone else.

If any of you pray...please pray that this works out well.

Again, thanks for all the support and encouragement during the past year.

[Bill1954]

Sorry to hear it; but thanks for sharing. So how do they plan to manage your treatment going forward? What options have they offered you?

Bill

[CINNs]

Hi,
I too am on neup. 300ml 1 wk. but every wk I have me blood taken and my wbc's / anc's get lower and lower. my dr is going to start me on 2 neup. shots a wk. and yes I thought I was going to die. That neup. has got to be one of the worst medicines for sx.
But if I don't do this the dr. says the only other option is to stop tx.
I am geno 1a w/ cirrhosis (stage 4 grade 4) so don't really have a choice.
From what I was reading are you saying that you did better with less neup.?
I'm really scared they are going to stop treatment......cindy

[Rosebud41]

I was having some trouble with neupogen sx and they reduced the amount I was taking to avoid the sx.  Neither my doctor nor I was expecting my anc to rise so quickly.

Remember I WAS NOT on  treatment and had low numbers without treating.

I had two bone marrow biopsies a year apart and the found no reason for my low anc
numbers and my liver biopsy was not that bad.  None of my numbers were really high as I have read. Almost every inch of my body has been scanned, poked, x-rayed...you get the picture I'm sure!!!

Bill 1954:  As I find out exactly what the plan is for me I'll share the info.

CINNs if you can hang in there do it, and I'll be praying for you that you might have the strength to indure. God Bless You!!

I really believe the many people who have prayed for me duing this difficult made all the difference in my mental and physical wellness.


Rosebud41

[Trinity4]

Rose,

I have a friend who was advised by one of the leading Hepatologists in the country to pre-dose with Neupogen prior to treatment because ANC was hanging around 600.  Never indicated a reason for low ANC either.

I started tx with a low white count and ANC just kept getting lower and lower as tx progressed.  Could be because of the advanced stage 3 liver disease but without Neupogen I couldn't continue tx.

I really hope your numbers stay at acceptable levels and you can treat when the time is right.   Good Luck to you.

Trinity

[springfever]

I think I'm the friend Trinity is talking about, unless she has another friend like me.  My esteemed Dr. (I really love him) is pre-treating me with Neupogen for one month.  He said my neutrophils were so low that I would not be a candidate for tx.  So he will try to get them up.  Sounds like we're in the same boat.  

My ANC bounces a bit, but hangs low.  It has gone up to 1800 on its own before.  
I'm glad you posted this and glad you are on track and feeling better.  Sounds like you're in good hands.

[jmjm530]

My doctor seemed shocked, but pleased,....Well, I decided to go with my doctor...and as of this week my very low 600 ANC is now 1500.
---------------
Not trying to sound facetious, but you might point out to your doctor that ANC can bounce around -- forget half a dose, even no dose. My ANC was 300 one week and two weeks later is was around 1200. No Neupogen. Is your doctor a hepatologist? Many hepatologists wouldn't even prescribe Neupogen with ANC 600 as studies not show that treatment induces Neutropenia (low ANC) is not associated with an increased infection rate.

- JIm

[Trinity4]

You did the right thing Rose.  If you start treatment with low ANC, it won't get any better.  

Jim, you may not have needed Neup but Rose did.  Still don't understand what the adversity to Neup is with you?  Very few people on this board that I can tell take it and those that do need it in my opinion.  Just because you didn't need it and your ANC bounced around doesn't mean everyone reacts that way.  It's a rescue, thank goodness we have it and if it's available to people who have problems with low ANC, they should TAKE IT.

I've never had anemia but ANC did not recover and I WAS sick all the time. I don't care what studies you gather your information from, it doesn't apply to everyone and never will just like I'll probably never have anemia nor do I have extreme side effects but I will ALWAYS have low ANC.

Is there a side effect that you want people to be aware of?  Since you were never on Neup you couldn't have experienced it first hand.  Awareness is one thing, but you're not experienced with Neupogen to say whether someone needs it or not.  Two weeks as in your case or a month of numbers are not the only factor when considering Neup.  Pearlman will prescribe Neup with an ANC below 600.  He's about as good as they get in my opinion.  
It really irritates me when you comment about Neupogen not being necessary because a lot of the time it IS necessary from a clinical point of view, not a personal one.

I'm not defending Neupogen because I take it.  It can be nasty stuff and has it's own side effects.  What I am defending is the information you continually post on the board about Neupogen and low ANC which might discourage people to take it if their doctor recommends it.  If that is the case, they could be dose reduced or pulled off of treatment.

Trinity

[portann]

Congratulations on your great news.  You've worked really hard to sort out your pre-tx challenges and can soon start thinking about treatment.

My ANC has been okay on tx.  I began with a high number and am one of those lucky people who hasn't tanked. That said, my hepatologist always intended to step in with rescue drugs during tx, if it got to 500 or 600. It can be nasty stuff but does the job.

He certainly would have resolved a low ANC number before starting tx, since tx is such a heavy hitter. He would have denied me tx rather than let me BEGIN at the cutoff for intervention.

You're in the hands of a top specialist at a teaching hospital, so that's an ace in your hand. Together, you fixed your numbers and even had two bone marrow biopsies in the process.

You show a lot of determination to see things through, so I'm sure that whatever tx holds for you, you can do it.  

All the best,

Port

[jmjm530]

Jim, you may not have needed Neup but Rose did...  S Just because you didn't need it and your ANC bounced around doesn't mean everyone reacts that way...

I've never had anemia but ANC did not recover and I WAS sick all the time. I don't care what studies you gather your information from, it doesn't apply to everyone and never will just like I'll probably never have anemia nor do I have extreme side effects but I will ALWAYS have low ANC
-------------
Aren't you doing the same thing you're accusing me of, i.e personalizing the discussion as to what would work for me or for you?

I post both what worked for me, what my doctor told me, what I've read, and the study that you seem to repeatedly distain. I'm not discouraging anyone from anything, just encouraging people to be as empowered as possible on this topic so they can make the most informed decision possible in conjunction with their medical team.

Sorry you're "irritated" about my point of view and my doctor's point of view that differs from your point of view and your doctor's point of view, but that is what this forum is about -- sharing all relevant opinions. Or maybe I should just bow out of these discussions so everyone will treat the way you think they should treat?

[jmjm530]

Just realized I never posted the study you don't "care" about, but maybe some other may, as well as some of their doctors who may not be aware.

"...In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not usually associated with infection.."

http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html

[Trinity4]

"Or maybe I should just bow out of these discussions so everyone will treat the way you think they should treat? "

I never said that.  I always advise a rescue if warranted.  We disagree on when it's warranted that's all.  

Rose's pre-tx ANC absolutely required a helper drug and without it she would not have been able to start tx or sustain the effects interferon has on ANC.  Do you think she should have made mention to her Hepatologist that it can go as low as 300 prior to starting tx?  That is my point. CINN needed it, springfever needs it prior to starting tx.  
We do what we have to do to increase our chances of remaining on treatment and forum members should know rescues are very relevant to succeeding or failing.

[portann]

I'll bet two dollars that everyone's hepatologist would agree that in the case of  an individual who has:

1) very low ANC's and

2) NOT yet started HCV tx

that the low ANC has to be fixed first.


If the 'study' does not address pre-tx persistent low ANC, how exactly is it relevant to Rosebud's case?

If anyone knows a doc who says to h-ell with ANC levels prior to starting tx, make my day, give me his phone number and let me ask him myself.

The chief reason that my hepa waved me through into treatment is because every one of my starting numbers was a beaut. And look at me now, the old gal's pretty beaten down, bouncy-bouncy or not.

[jmjm530]

Do you think she should have made mention to her Hepatologist that it can go as low as 300 prior to starting tx?
----------
My remarks were directed to Neupogen and ANC values *during* treatment, not pre-treatment. The fact that this was pre-treatment was not made clear in the initial post of this thread. And frankly, I have no opinion on taking Neupogen on a preemptive basis because I'm not studied on that topic. Are you? Apparently even within her own medical team, there was a difference of opinion.

But that's really not what our *discussion* was about, was it.  It quickly turned into one of our older discussions -- albeit a little more spirited this time :) -- about Neupogen and when to take it.

The 500 threshold you mention is a very common one and I have no problem with it. But we have repeatedly seen people here take Neupogen with ANC 1000 and even higher, and probably because their doctors weren't as experienced as they could be. Should we just cheer them on, or maybe let them know that others treat differently. That is one of the amazing things about a forum like this -- perhaps the most amazing -- is that you can get snapshots of how a fairly large population of patients treat with a variety of different doctors.

The study I post is an important one and does not mean, nor do I suggest, that people should not take Neupogen. But it does add something to the discussion and no doubt that is one of the reasons that the ANC threshold seems to be dropping among hepatologists. Your doc uses 500 and PA's uses 500 I think. Mine and several others here -- think FLGuy, not sure -- uses closer to 300. These are all good doctors, just different cut off points. And yes, my ANC did pop from 300 to over 1000 without Neupogen, but maybe yours wouldn't. And, I'm sure if mine didn't, I would have been on Neupogen and glad that it's around. As it worked out, I'm still glad it's around but equally glad I didn't need it.

-- Jim

[springfever]

The study addresses 5 patients with pre-existing neutropenia.  3 had constitutional neutropenia with minimal change during tx.  2 had advanced fibrosis with significant decrease during tx.  Of the 5, pre-tx, 855 was the lowest starting count.  

Not much to go on for pre-tx neutropenia, but it's good to see some data to compare with my own.  Since my ANC 600 is less than any of the 5, makes me feel good about my doctor's course of action.  Also, gives me some numbers to watch for during tx.

This forum is invaluable to me.

[jmjm530]

If the 'study' does not address pre-tx persistent low ANC, how exactly is it relevant to Rosebud's case?
-------------------------------------------
As stated previously, I was talking *during* treatment, not pre-treatment. That said, and my thanks to "springfever" (post above)  for a better read than I.

Turns out that the study does address pre-tx persistent low ANC aka as constitutional neutropenia. While counter-intuitive,  as much of medicine is, it appears that the ANC drop with pre-existing neutropenia is less than what would be thought.

Thanks Springfever for the heads up, and happy that the posted study was useful to assuming you hadn't read it before.

-- Jim

-- Jim

[portann]

Springfever, I was also going to thank you for studying the study. You're a rare gem!  One of these days, I'll have to learn to read.

Five people in a study is not much to go on, in terms of how best to proceed. Since none had ANC's anywhere near as low as yours, your doctor was both prudent and smart. You're the one to pay the piper, so if he can avoid your going to the emergency, so very much the better.

Thanks for posting and I hope all is okay.

Port

[springfever]

I had not seen the study before, Jim, thanks for posting it.
And a heartfelt thanks to Trinity for advising earlier to listen to Pearlman..he knows what he is doing.

Rosebud, I hope you/we get to read the paper your doctor is writing on this topic.

Portann, I don't know about rare gem.  I read all I can find and understand little.  I read on.. like I know what I reading. haha

[Rosebud41]

Springfever our situations do seem very similar...

My blood was monitored for nearly a year prior to trying the neupogen.
It was stable. There was very little bouncing around.

As you know my doctor is a hematologist and head of the department at a major teaching hospital. He is also head of  the department at a large medical school in my area.He is well known and treats many of the medical professionals,in this area, who become infected.

He has mentioned to me that some people can be allowed to drop to 300 ANC before intervention. However, I don't think he would consider starting treatment with 300 or even 700.

I feel very positive about the care I am now getting.

Again, thanks for your interest and support

Rosebud