Dr. says stop Low Neutrophils

[Rosebud41]

Well, the doctor finally called back.
He said when he spoke with the hematologist he
suggested I stop until he evaluates me.

I suggested maybe I could continue the REBA but he said the hematologist says stop!

So, I guess I'll have to wait until Thurdays to see what the hematologist has to say.

Does anyone have any thoughts about my situation?

[wyntre9]

I've been on tx 66 weeks.  during the first month, my neuts and ANC dropped to .7  (can't remember which is which).  this was in my first lab report.  my gastro called me at home and ordered me to go immediately to a hematologist.  he was so concerned, he called me back twice more, once with directions, the second time to make sure i was leaving!  *LOL*

Hematologist gave me neupogen and said i could continue on my schedule.  Injection was that night.  Hematologist said he didn't understand why my Dr. was so concerned coz I wasn't below .5, yet.  in any case, after getting low labs the next time i was put on twice monthly neupogen.

From what I understand, there isn't much of a reason to interrupt treatment, yet, unless your numbers are below .5.  your Dr. is probably trying to play it sade.  (IMHO).  Knowing what I know now, i would probably do the injection, see the hemo ASAP.  What week are you on and what's your gentoype, stage and grade?

wyntre

[Rosebud41]

Geno type 1 is all I know
I don't see the hematologist until next week.
Have not had a biopsy.

I asked doctor today about continuing and he said the hepatologist indicated
I should stop until I see him Thursday. That will be almost a week without a shot.

I really sick of this. It's like I'm going backward.
Maybe God has another plan.
I'm going to do as instructed
But, I' ve  learned a real lesson.

[jmjm530]

Since you don't know your numbers, you really have no choice but to follow your doctor's advice.

That said, you could demand to see the hematologist before your next injection, so that in the event you get the green light to continue, that you won't miss a shot. Meanwhile, unless you have full confidence in your medical team, you might also try to line up a second consult with a liver specialist (hepatologist) who could help evaluate how suitable you are to continue treatment. Sometimes these appointments can be arranged in very sort notice if you explain the urgency of the matter to someone other than the appointment secretary -- perhaps the nurse or the doctor directly. What would be handy to have before the call would be a copy of both the pre-treatment labs, your latest labs, and your current doctor's explanation of why he and the hematologist is asking you to stop. A lot of work, but worth taking a crack at if so motivated.

All the best,

-- Jim

[burned74]

Jim, you have far more knowledge than me or most anyone else on this site so I would defer to you.

During my treatment, I went on neupogen due to a low ANC count. It seems like it is a  straighfoward formula . Once the ANC's drop to a certain level you just go on neupogen. Its as simple as that.

My Doc did not seem that concerned at all. Maybe Rosebuds doc is not so experienced and he should think about transition to someone who has treated more Hep C patients.

[jmjm530]

Of course, hard to be certain given no blood values were posted, but it certainly seems that way. Like you suggest, in general Neupogen is preferred to reducing the Peg dose, and Procrit preferred to reducing the riba. In this case, it seems like both drugs are being stopped, and early-on, where stoppiing the drugs can have the most negative effect. This assumes, of course, that Neupogen or Procrit are even needed, because we've seen some cases before here where apparently inexperienced docs were pulling the plug just because someone's WBC's went in the low zone, which is something quite normal on treatment. Hopefully, Rosebud will be able to get some clarification soon either from the hematologist and/or a consultion with a liver specialist (hepatologist).

-- Jim

[Rosebud41]

You are both correct. I had the wrong doctor.
I've seen a "real" hepatitis specialist as of Thursday.
Evidently, I should not have even started treatment with my low baseline neutrophil
count.  I have been taking some blood pressure meds for 1 1/2 month that has neutropenia as a side effect. A hematologist is now checking it out. If that is my only problem the specialist says I can try again to start the treatment or I can wait to see what treatment the treatment will be available in the future.
The specialist indicates that it looks like it was situation of real bad timng.
After his exam he says it appears I am in good health except for the virus.

Not only did the doctor who was treating jump the gun starting the treatment.
He prescribed too much Neupogen to correct the situation. I feel lucky to have made it through the crisis with no worse problems than I have. (After the second shot my levels dropped to almost 0.1)

If it were not for the community weighing in and making suggestions I just don't know
what would have happened.

What are your thoughts?

I'm blessed, and I'm lucky etc.