Stopped due to low neutrophil count

[Rosebud41]

I was stopped after the second week because my neutrophil count plunged to below .5

Apparently, my count was really too low to start treatment in the first place. Evidently, the doctor treating me did not realize my count had recently been dropping. And was too low to start the treatment without some investigation.

I then went to a hematologist. Every other aspect of my CBC is on target (normal) except the neutrophil count several test have been run and they all have come back clear.

My doctor gave neupogen me  to bring it up. He was (lack of experience except with textbook cases) really alarmed because he had never seen a drop like mind after the second week. I think I was given too neupogen much and my numbers were off the chart.

I then went to a hematologist. Every other aspect of my CBC is on target (normal) except the neutrophil count. Several tests have been run and they all have come back clear. They're still looking to try find out what has cause a drop in neutrophil count. I feel pretty good execpt for joint/muscel pain that can't be stopped if it starts.

During the  two week I was on Pegasus/Reba my enzyme count had started to come down.

The hematologist is still looking, but I really feel pretty good and I don't think he's going to find anything serious.

Is there anyway the hepatitic itself could be causing problems.  Yesterday my  neutrophil count was 2.7.

It will be taken again on Tuesday to see if it has gone up, down or stayed the same.

Got any thoughts?

[FlGuy]

There is no need to stop tx if they gave you Neupogen.  The stuff works quickly in bringing up Absolute Neutrophils.  This will put your treatment at risk.  The (2.7) does not seem to be the neutrophil count, maybe the WBC count. I'd suspect that your treatment dos is a gastro who does not have a lot of hcv experience or just doesn't care about the outcome.

[Rosebud41]

My neutrophile count was 270.

I don't think he had enough experience, my internest found him.

She is no longer my doctor.

[Rosebud41]

My treatment was stopped 3 weeks ago.

There's not a lot I can do about that now.

I'm seeing a hematologist that probably would not have stopped so soon.

I can understand the doctor was frightened, but there is nothing I can do about that now.

He should have found out  about my problem and how to handle it before we started.

Telling me my treatment will be at risk does not help in this situation because there is nothing I can do about that now but hope for the best.

Unfortunately, the gastro I had was in a panic and I did not have an alternate plan.

Has anyone else had to stop and re-start?

It's unfortunate that's the situation, but I am stuck with it.

I have to believe God has another plan for this situation.

Rosebud

Rosebud

[ladywhy]

There are many here who have had multiple tx's. FLGuy, I'm sure did not realise you had already discontinued tx. Now's the time to find a Hepatologist preferably at a Univ. Hosp.. It happened, I'm sorry...but time to move ahead. You'll get the buggers yet!
y

[Rosebud41]

Ladywhy:

I realize Flyguy was just trying to help and I was not offened. I am just frustrated!!

I spoke with a top doctor at an area research hospital and he said he would not recommend treatment for anyone with a baseline neutrophil count of less than 1400.  On Friday I was 270.  

It appears my levels have been dropping little by little for the past few years and the doctors want to know what is causing it.  Personally, I think it has something to do
with the hepititis. I only got the diagnosis two months ago at 59 years of age.

The hematologist I am now seeing is investigating to find the cause of my low neutrophil count.  He appears to be willing to do some  creative things to try to treat me. However,
I will certainly move with more thought and info than I did with the first doctor who was recommended by the internest I no longer see.

Does anyone have any suggestions?

Does anyone know of any hospitals in the Mideast who would consider my case.

Flyguy I know you were being helpful so just give me some more info and
we'll all move on it if I can.  I need all the help I can get.

Rosebud

[ladywhy]

I'm glad to hear that your hemo dr is thinkin outside the box....creatively. For those of us who can't do SOC for whatever reason...that's the kind of dr's we need (Hepa, Hemo's etc..)
I wish I knew someone in the Mideast...but hopefully we'll get some answere here from other posters.I know you must be concerned and frustrated....what I do (quite often!!) is say the serenity prayer...for some reason it works.
I wish you a Happy Holy Easter.
Yvonne

[Rosebud41]

Dear SusieQ

I had a scan of my organs and it looks normal.
Everything related to my CBC is absolutly normal except the neutrophil count.
They have run lots of tests and so far everything has come back OK. (Still a few out.)
in 2002, 2003 my numbers were fine. I believe they were somewhere in the 2000 range, but slowly they have been dipping.  The hemotologist questions what the hepititis is doing in my body of if I have some other issue.  I think he'll try to tackle the problem if he can't find anything serious to prevent treatment.  I think my count went down to .02.
They stopped treatment and gave me neupagen.  My level after stopping eveything for a week was 270 neutrophils   WBC if I remember was 2.9.

I really don't think the should have stopped treatment, but I think my dr. was leaving town and wanted to be on the safe side.

I go see the hematologist on Tuesday.  

I'm in Michigan, but I will go wherever I have to.

The doctor I am seeing now seems to want to treat me and his physicians assistant has suggested some things she says the doctor is considering. I think my previous doctor, who is being real nice, would just as well send me off to someone else.

The hematologist really seems like if he can't find anything in my system that would exclude treatment that he will work with the Pegasus/REBA and neupagen.  If that is the case I am really going to make sure we have plans and back-up plans for any possible situation.

Because on my low baseline and age I may have difficulty finding folks who think out the box and are willing to give me a "shot."