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Neutrophils - how low can you go?
Got labs back today and Neutrophils dropped to 446 cells/ul. Doc wants to reduce instead of prescribing Neupogen. I'm at 27 weeks (48 wk tx). Comments?
thanks in advance --stacie
thanks in advance --stacie
I went all the way to zero. It was a very scary time. I would push for neupogen or neulasta instead of reducing. Good luck.
well, at least I know I can go further without reducing. After all this suffering, I really don't want to reduce and I jwant to stay UND. thanks
Hi Stacey,
I believe the hepatology group I use in Northern CA allows patients to go to about 350-400 before they intervene, but 500 is quite common. I also think it depends on whether or not you might be predisposed to pathogens; for instance a health care worker should probably try to keep things a little tighter due to occupational exposure.
I agree wholeheartedly with Susie above; inquire about Neupogen or Neulasta as opposed to dose reduction.
I hope you’re holding on OK, and are having a peaceful evening—
Bill
I believe the hepatology group I use in Northern CA allows patients to go to about 350-400 before they intervene, but 500 is quite common. I also think it depends on whether or not you might be predisposed to pathogens; for instance a health care worker should probably try to keep things a little tighter due to occupational exposure.
I agree wholeheartedly with Susie above; inquire about Neupogen or Neulasta as opposed to dose reduction.
I hope you’re holding on OK, and are having a peaceful evening—
Bill
Hi Bill
I go back in three weeks, I will mention it. You won't believe what he told me today. He said "well, there are two things we can do." "we can put you on Neupogen, but that's expensive, so we will probably reduce your dose."
I was too tired to say anything but he shouldn't care about the expense. Geeez, sometimes I wonder which is the worst sx, insurance companies, doctors, or treatments.
I go back in three weeks, I will mention it. You won't believe what he told me today. He said "well, there are two things we can do." "we can put you on Neupogen, but that's expensive, so we will probably reduce your dose."
I was too tired to say anything but he shouldn't care about the expense. Geeez, sometimes I wonder which is the worst sx, insurance companies, doctors, or treatments.
I never got below .8 so I didn't need the Neupogen, but I think I would have gone for the rescue drug rather than the reduced dose. Good luck. I hope you don't feel as bad as the number looks!
Brent
Brent
They get nervous when you drop below 1000. My worst count was 640 and they stopped all meds for 4 days until the neulasta became available at the pharmacy. They were so freaked out that they insisted I buy an extra shot to keep on hand. The first time neuts went low (around 1000) I got a bacterial infection (kidney). Not everyone does that with low neuts and I've seen studies where they thought low neuts was not harmful. Just wasn't the case for me. I would ALWAYS prefer the rescue drugs to dose reduction.
Have you cleared yet? That would make it less worrisome for me to reduce the peg.
Have you cleared yet? That would make it less worrisome for me to reduce the peg.
Most aggressive doctors won't raise an eyebrow until ANC drops below 500.
ANC bounces around but if a consistent decline is noted, especially moving below 500 it would be advisable to talk with your doctor about the rescue Neupogen. Most people react very quickly to Neupogen given the dosage is appropriate.
ANC bounces around but if a consistent decline is noted, especially moving below 500 it would be advisable to talk with your doctor about the rescue Neupogen. Most people react very quickly to Neupogen given the dosage is appropriate.
oh, and a couple responses... Yes, UND at week 12 and I'm actually not feeling any worse as time goes on and my hb stays up. On a good note, my platelets are almost normal. In December, they were crashing. --Stacie
You've been UD for almost 4 mos. so peg reduction probably won't harm you. However, I don't see the point since your platelets are good. I still vote for the neulasta/neupogen.
IF you are one who might get sick from low neuts it does not matter if you stay home and be careful. You are not at risk of viruses, colds, etc., but of bacteria that are already in your body and the neuts just easily keep them down. If you are concerned you can take your temp every day. If it stays normal (not counting shot days) you aren't having a problem from low neuts.
IF you are one who might get sick from low neuts it does not matter if you stay home and be careful. You are not at risk of viruses, colds, etc., but of bacteria that are already in your body and the neuts just easily keep them down. If you are concerned you can take your temp every day. If it stays normal (not counting shot days) you aren't having a problem from low neuts.
Your doctor's advice is not consistent with the latest Journal articles and studies.
In general, the preferred strategy is to use a helper drug such as Neupogen instead of reducing your dose of Peg. The fact that you've been undetectable for four months makes no difference here.
is your Dr. a liver specialist ( hepatologist) or a gastroenterologist? if your doctor insists on dose reduction in my opinion you should get a second opinion from a hepatologist. I should also add that in Trinity's words my Dr. wouldn't have raised an eyebrow or even a nose hair at your numbers. My ANC was close to 300 and I remained on full dose Peg even without Neupogen.
As far as infections are concerned, newer studies do not find a correlation between bacterial infections and low ANC.
Full dose compliance is one of the few things within our control during treatment. my suggestion is not not to lose that edge without a second opinion.
-- Jim
In general, the preferred strategy is to use a helper drug such as Neupogen instead of reducing your dose of Peg. The fact that you've been undetectable for four months makes no difference here.
is your Dr. a liver specialist ( hepatologist) or a gastroenterologist? if your doctor insists on dose reduction in my opinion you should get a second opinion from a hepatologist. I should also add that in Trinity's words my Dr. wouldn't have raised an eyebrow or even a nose hair at your numbers. My ANC was close to 300 and I remained on full dose Peg even without Neupogen.
As far as infections are concerned, newer studies do not find a correlation between bacterial infections and low ANC.
Full dose compliance is one of the few things within our control during treatment. my suggestion is not not to lose that edge without a second opinion.
-- Jim
Jim,
I read the study about no correlation. It was just data about one group, as I recall. Once again the studies are not always as reliable as we'd like. I developed a kidney infection the first time my neuts dropped and they really weren't that low. It's more of a person-by-person thing. I use the neulasta as soon as I hit 1000. Kidney infection was agony, with pain and high fever and the broad spectrum antibiotic was worse than the treatment meds; made everything taste and smell wrong.
I read the study about no correlation. It was just data about one group, as I recall. Once again the studies are not always as reliable as we'd like. I developed a kidney infection the first time my neuts dropped and they really weren't that low. It's more of a person-by-person thing. I use the neulasta as soon as I hit 1000. Kidney infection was agony, with pain and high fever and the broad spectrum antibiotic was worse than the treatment meds; made everything taste and smell wrong.
" If you are concerned you can take your temp every day. If it stays normal (not counting shot days) you aren't having a problem from low neuts."
That's not necessarily true. I'm on Neupogen and never ran fevers from low ANC so normal temp doesn't mean your ANC isn't low and isn't an accurate gauge. I do get fevers and bone aches from the Neupogen on injection days and 2 days after Peg injection. 60 wks so far so there isn't a standard except for CBC to determine where your ANC is.
That's not necessarily true. I'm on Neupogen and never ran fevers from low ANC so normal temp doesn't mean your ANC isn't low and isn't an accurate gauge. I do get fevers and bone aches from the Neupogen on injection days and 2 days after Peg injection. 60 wks so far so there isn't a standard except for CBC to determine where your ANC is.
I'd opt for the neupogen, even though I never took it.
My doc thought my 500 was fine. He let it go until my regular blood work two weeks later when it bounced back. I don't know if this was expertise or negligence on his part. :)
In my late stage of tx, it went below 500 and although the nurse expressed minor concern, she let me finish without intervening. I had the same problem with hemoglobin in my last few weeks .
Two weeks after tx, both my hemoglobin and ANC were almost normal. Pretty nice, huh?
My doc thought my 500 was fine. He let it go until my regular blood work two weeks later when it bounced back. I don't know if this was expertise or negligence on his part. :)
In my late stage of tx, it went below 500 and although the nurse expressed minor concern, she let me finish without intervening. I had the same problem with hemoglobin in my last few weeks .
Two weeks after tx, both my hemoglobin and ANC were almost normal. Pretty nice, huh?
I'm in a trial, so when mine got to 640, they wanted me to reduce my peg. Someone here suggested eating shiitake mushrooms or taking a shiitake mushroom supplement. I did both---don't know if that helped bring it up quicker, but I felt it was worth a try. My mindset was anything to try to stay on full doses.
The good thing is that the anc doesn't take as long to come up as the hgb, so if they insist on reducting, it will hopefully come up quicklly. Gotta say tho, I'm a big believer in full doses like jim.
Good luck
The good thing is that the anc doesn't take as long to come up as the hgb, so if they insist on reducting, it will hopefully come up quicklly. Gotta say tho, I'm a big believer in full doses like jim.
Good luck
Temp does not mean your neuts are low, only bloodwork tells that. Temp means you are getting an infection because neuts are low. It would be a lot harder to guage if you run temps from other things though.
first, the study didn't say there weren't any infections on treatment. In fact, there are plenty of infections on treatment and no doubt this is caused by the treatment drugs.
The study said something that different. What it said was that those with low ANC didn't have any more infections then those with higher ANC. I'm sorry about your kidneys, but low ANC may have had nothing to do with it. But the study aside, many here including myself are treated with let's call them "big hitters" have been allowed to continue on full dose at comparable ANC levels.
but getting back to the question. As I see it, the prudent thing would be to really make sure that dose reduction is necessary before reducing.
Your comment that dose reduction "probably won't harm you" may be your opinion, but I've never seen any data to support it or any top doctor who builds a treatment strategy around that.
-- Jim
The study said something that different. What it said was that those with low ANC didn't have any more infections then those with higher ANC. I'm sorry about your kidneys, but low ANC may have had nothing to do with it. But the study aside, many here including myself are treated with let's call them "big hitters" have been allowed to continue on full dose at comparable ANC levels.
but getting back to the question. As I see it, the prudent thing would be to really make sure that dose reduction is necessary before reducing.
Your comment that dose reduction "probably won't harm you" may be your opinion, but I've never seen any data to support it or any top doctor who builds a treatment strategy around that.
-- Jim
My hematologist told me that people with hep C treatment induced neutropenia do not usually get infections until they get very very low. I didn't get an infection until I reached very close to zero and again when I bottomed out to zero and stayed that way for close to 6 weeks, even on neupogen. The problem is, if you get an infection you cannot fight it off without a neutrophil count. It isn't just as simple as you aren't more prone to infections. Also, the best doctor to see is a hematologist, not a hepatologist. The hematologist/oncologists are used to seeing ANC counts below 100 and using the rescue drugs. They also treat many hep C patients as many hep docs are not expeienced using the rescue drugs and would prefer to hand it over to the hematologist/oncologist docs. They would be the likliest to prescribe neupogen or neulasta.
Jim I'm seeing a gastroenterologist. My opinion of him has become a little more favorable over my treatment comparing notes with all of you but I still keep one eye open.
Leaf, i understood what you said about the temperature, actually not a bad idea, sure won't hurt.
No decisions yet on drs part, I go back in 2 wks for more labs. I'm glad I have the time, I like to come here and bounce it off all of you so I know most of the options and can have an intelligent coversation with him. If it comes to it, I will try to convince him to prescribe the Neupogen.
Leaf, i understood what you said about the temperature, actually not a bad idea, sure won't hurt.
No decisions yet on drs part, I go back in 2 wks for more labs. I'm glad I have the time, I like to come here and bounce it off all of you so I know most of the options and can have an intelligent coversation with him. If it comes to it, I will try to convince him to prescribe the Neupogen.
here's a link to the study mentioned. The authors do not seem to share`your concern about not being able to fight off infections.
http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html
we also disagree on which type of Dr. -- hepatologist or hematologist -- is best to make decisions regarding helper drugs. I am sure that there many hematologist at the top of their game were very knowledgeable about HCV treatment. However, at least based on what I've read here, the problem in many cases is that hematologists are often not as familiar with HCV induced anemia and neutropenia and their ramifications as let's say a hepatologist in a major teaching hospital and may have a case load personally of over 100 HCV patients at any one time. This base of experience is almost impossible to duplicate by any other specialty. And that reason, at least the hepatologists I have consulted with administered their own helper drugs and do not send patients out to hematologists under the circumstances that we've been discussing here. Going back to what I read here, I've seen a number of cases were obvious mistakes -- such as premature discontinuance of therapy -- are made on the advice of hematologists.
Where we do agree I believe, and that seems central to the question here, is that Yuk has better options than reducing the Peg which would in turn potentially reduce the chances of SVR.
Yuk -- you seemed to have confidence in your Dr. which is good but personally I would think ahead on this very important issue and try to get some sort of commitment right now that if push comes to shove you will minimally be allowed to helper drugs as opposed to dose reduction. Having that discussion the day the doctor tells you to cut your peg in half is not the right time. If it turns out that you cannot get this commitment, you might start looking around for backup Dr..
-- Jim
http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html
we also disagree on which type of Dr. -- hepatologist or hematologist -- is best to make decisions regarding helper drugs. I am sure that there many hematologist at the top of their game were very knowledgeable about HCV treatment. However, at least based on what I've read here, the problem in many cases is that hematologists are often not as familiar with HCV induced anemia and neutropenia and their ramifications as let's say a hepatologist in a major teaching hospital and may have a case load personally of over 100 HCV patients at any one time. This base of experience is almost impossible to duplicate by any other specialty. And that reason, at least the hepatologists I have consulted with administered their own helper drugs and do not send patients out to hematologists under the circumstances that we've been discussing here. Going back to what I read here, I've seen a number of cases were obvious mistakes -- such as premature discontinuance of therapy -- are made on the advice of hematologists.
Where we do agree I believe, and that seems central to the question here, is that Yuk has better options than reducing the Peg which would in turn potentially reduce the chances of SVR.
Yuk -- you seemed to have confidence in your Dr. which is good but personally I would think ahead on this very important issue and try to get some sort of commitment right now that if push comes to shove you will minimally be allowed to helper drugs as opposed to dose reduction. Having that discussion the day the doctor tells you to cut your peg in half is not the right time. If it turns out that you cannot get this commitment, you might start looking around for backup Dr..
-- Jim
I've had zero neutrophils during two different tries with interferon. It isn't the HCV that is causing it. It's the interferon. And the hematolgoists have lots of experience with that drug and many others when it comes to neutropenia. My gastro spoke at a hepatology conference in NYC during the time I was hospitalized and sat with me for a long time one day in the hospital telling me that the hep docs he spoke with almost always turn over their patients with stage 4 neutropenia to the hematologists. We weren't dealing with 500 neutrophils Jim. And the point is no one with under 100 neutrophils can easily fight off a bacterial infection. I don't believe that a hematologist/oncologist would rather cut a dose or stop treatment. They know better than that. They deal with that every day of their lives no matter what the patient is using these drugs for.
Fat fingers hit post before I was finished. sorry.
The study at HCV Advocate talks about people with neutropenia at or above 500. And it seems to say that it is unclear if these patients have an increased risk of bacterial infections. And they didn't even look at patients who were below an ANC of 500. In fact they looked at people with counts just below the norm so those people enter into the mix as well. And these people developed infection at a rate of 18%, At another point they referenced that no patient had a count of less than 750. Are you sure we are reading the same study?
I'm passionate about this because I don't want anyone to end of hospitalized from this, or worse, die of treatment induced neutropenia. It was a terrifying experience. And it got worse when the neupogen decided not to work for quite a long time. Fortunately that doesn't happen very often but it is a real possibility. I was not his first case.
The study at HCV Advocate talks about people with neutropenia at or above 500. And it seems to say that it is unclear if these patients have an increased risk of bacterial infections. And they didn't even look at patients who were below an ANC of 500. In fact they looked at people with counts just below the norm so those people enter into the mix as well. And these people developed infection at a rate of 18%, At another point they referenced that no patient had a count of less than 750. Are you sure we are reading the same study?
I'm passionate about this because I don't want anyone to end of hospitalized from this, or worse, die of treatment induced neutropenia. It was a terrifying experience. And it got worse when the neupogen decided not to work for quite a long time. Fortunately that doesn't happen very often but it is a real possibility. I was not his first case.
California Pacific Medical Center in San Francisco maintains nine hepatologists *and* nine hematologists in their medical/transplant liver clinic:
http://www.cpmc.org/advanced/liver/team/medstaff.html
I believe hematologists provide an essential role in HCV management; an I can’t see them dose reducing any medications unless necessary. They also treat cancer Tx, where dose compliance is every bit as critical as HCV treatment, I’d think.
Bill
http://www.cpmc.org/advanced/liver/team/medstaff.html
I believe hematologists provide an essential role in HCV management; an I can’t see them dose reducing any medications unless necessary. They also treat cancer Tx, where dose compliance is every bit as critical as HCV treatment, I’d think.
Bill
I don't disagree with anything you said and perhaps we were having two different conversations :) What I was trying to say, and what I believe you said as well, was that most well versed hepatologists (and I'll include well versed hematologists) do not panic and reduce Peg just because ANC falls to around 500. I also don't think that "Yuk" should reduce the peg without getting another consultation. My guess is that you agree with me here as well. And that really was the question of this thread.
I never inferred your ANC was because of HCV in my comments were solely directed to those on treatment. I was also not commenting on ANC approaching zero as was your case. But again I was trying to give an opinion in Yuk's case where the ANC was much higher.
Last word from me on hematolgist versus hepatoloigst. As I have already stated, I'm quite sure there is some very knowledgeable hematologists who know exactly what to do with a patient on SOC. And and I'm sure that the ones working at CPMC are especially knowledgeable. But I still stand by my observations in this forum. And that is I have seen a number of bad calls by hematologists who invariably were not working with top hepatologists but with a local G.I. who simply turn the patients over to them. This two doctor approach did not seem to work for a well at least in those cases. I'm sure there are exceptions. Had my hepatoloigst decided I needed the services of a hematologist I certainly would've went. But he didn't and as far as I know his practice handles most of these issues in house.
-- Jim
I never inferred your ANC was because of HCV in my comments were solely directed to those on treatment. I was also not commenting on ANC approaching zero as was your case. But again I was trying to give an opinion in Yuk's case where the ANC was much higher.
Last word from me on hematolgist versus hepatoloigst. As I have already stated, I'm quite sure there is some very knowledgeable hematologists who know exactly what to do with a patient on SOC. And and I'm sure that the ones working at CPMC are especially knowledgeable. But I still stand by my observations in this forum. And that is I have seen a number of bad calls by hematologists who invariably were not working with top hepatologists but with a local G.I. who simply turn the patients over to them. This two doctor approach did not seem to work for a well at least in those cases. I'm sure there are exceptions. Had my hepatoloigst decided I needed the services of a hematologist I certainly would've went. But he didn't and as far as I know his practice handles most of these issues in house.
-- Jim
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