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Question for JmJm530 - neutropenia
JmJm--you have been referred as the person to ask about neutropenia. I posted earlier about Neupogen. My doctor has written an order for 12 vials/Neupogen. My March 30 blood work showed WBC at 2.0 and Absolute Neutrophils at 694. On Feb.23 blood work, WBC were 2.7 and Neutrophils at 689. I really don't want to take neupogen if I don't have to. My doctor's nurse said I need to per the doctor. I've read several articles about reduction in interferon first, before going route of neupogen. I've heard there is extreme bone paid associated with neupogen, not to mention a hefty price tag. Any comment on this will be very appreciated. Good news was VL was <5 Heptimax test. Thank You.
Different doctors have different standards in terms of administering the helper drug Neupogen. One standard is to administer when Absolute Neuts (ANC) is below 750. Apparently that is the standard your medical team uses. Other doctors use lower standards such as ANC 500. Some doctors, like my liver specialist, allow ANC to drop to 200-300 and don't necessarily administer Neupogen until ANC remains that low. My ANC dropped to 320 at it's low point but bounced back to over 1000 two weeks later. In addition to the cut-off points above, some doctors may modify the cut-off points depending on the individual patients history as well.
If you feel your doctor is being overly conservative by suggesting Neupogen at ANC 694, then I'd by all means pick up the phone and tell the nurse you want to speak to the doctor. Tell him that you'd like to re-test in another week or two, as you've heard that ANC bounces around a lot, and see what the doctor says. Believe it or not, many doctors -- even the big shots -- really do value patient input but it can often get lost when transmitted through a nurse whose job is often just as much to make things easier for the doctor than it is to do what is best for the patient.
As to lowering your dose of interferon, yes, it's certainly an alternative to taking Neupogen, but it also risks lowering the odds of that SVR I know you must want, especially with a non-detectible Heptimax test.
BTW, here's a link to an '05 study that suggests that interferon-induced low WBC is not related to a higher risk of infection. Something that might be helpful with your nurse or doctor. http://tinyurl.com/qjtfz
All the best,
-- Jim
If you feel your doctor is being overly conservative by suggesting Neupogen at ANC 694, then I'd by all means pick up the phone and tell the nurse you want to speak to the doctor. Tell him that you'd like to re-test in another week or two, as you've heard that ANC bounces around a lot, and see what the doctor says. Believe it or not, many doctors -- even the big shots -- really do value patient input but it can often get lost when transmitted through a nurse whose job is often just as much to make things easier for the doctor than it is to do what is best for the patient.
As to lowering your dose of interferon, yes, it's certainly an alternative to taking Neupogen, but it also risks lowering the odds of that SVR I know you must want, especially with a non-detectible Heptimax test.
BTW, here's a link to an '05 study that suggests that interferon-induced low WBC is not related to a higher risk of infection. Something that might be helpful with your nurse or doctor. http://tinyurl.com/qjtfz
All the best,
-- Jim
thank you jmjm........your input is most valuable and I will ask to speak directly to the doctor on this subject. The doc's nurse, in a short story, basically told me not to believe everything you read on the internet. Well, if I didn't do the research and stay on top of things, I'd not have a current doctor, nor any rescheduled blood work, nor finding this out about my WBC, since note on lab work was dated 3/30 and it's 4/9 now. Thank YOU again.
If you only want Jim's opinion, then don't read this. Of all people on the board, I would say Jim is the person to ask if you don't want to take Neupogen. There are many many of us here who did take it, upon the advice of our doctors, with no terribly adverse side effects. Jim's highly acclaimed liver specialists did not use it. In my humble opinion, Jim's highly acclaimed liver specialists were only interested in Jim's liver - not the rest of him. He had multiple infections throughout treatment that may or may not have been lessened by taking neupogen. Ask him how many rounds of antibiotics he took while on treatment.
I myself relied on comments by Jim and others to convince my hemotologist that I knew more than her - even giving her the above mentioned studies. Although my white counts dropped dramatically in the first 4 weeks of treatment, I held off. However, when ANC dropped to .4 I bowed to her wisdom. What is the harm? I was sick once on tx and it lasted a week or so. I was on antibiotics for 2 weeks during that illness.
There are other factors. What is the state of your liver? Cirrhotics are encouraged to NOT let their ANC drop as low as others. What is your immune system like over all? Are you subject to infections - particularly skin infections, sinus problems, sore throats, not sure what else. A re you areound small children, hospitals, old people, others that may caarry and spread infections?
The thing about low white counts is that we can't feel them. With low red counts we are dragging and out of breath and dizzy and beg our doctors for help. With low white counts, I feel that we have to rely uupon the wisdom of our doctors.
Jim - no disrespect to you. You know I disagree with you on this issue.
I took Neupogen from week 16 or so through to the end of my 56 week treatment and then for about another month thereafter. My hemotologist (who is also an oncologist (and a lawyer, but I digress....) said that after chemotherapy (including treatment for hep C) when your white blood counts remain low for so very long, they may NEVER get back up to pre treatment levels. She said that was okay, but, still, in my opinion, we should try to keep those white blood counts as high as we can. Rarely during my course of treatment was my white count over 2 and for the most part, even with Neupogen my ANC remained between .5 and .8.
I myself relied on comments by Jim and others to convince my hemotologist that I knew more than her - even giving her the above mentioned studies. Although my white counts dropped dramatically in the first 4 weeks of treatment, I held off. However, when ANC dropped to .4 I bowed to her wisdom. What is the harm? I was sick once on tx and it lasted a week or so. I was on antibiotics for 2 weeks during that illness.
There are other factors. What is the state of your liver? Cirrhotics are encouraged to NOT let their ANC drop as low as others. What is your immune system like over all? Are you subject to infections - particularly skin infections, sinus problems, sore throats, not sure what else. A re you areound small children, hospitals, old people, others that may caarry and spread infections?
The thing about low white counts is that we can't feel them. With low red counts we are dragging and out of breath and dizzy and beg our doctors for help. With low white counts, I feel that we have to rely uupon the wisdom of our doctors.
Jim - no disrespect to you. You know I disagree with you on this issue.
I took Neupogen from week 16 or so through to the end of my 56 week treatment and then for about another month thereafter. My hemotologist (who is also an oncologist (and a lawyer, but I digress....) said that after chemotherapy (including treatment for hep C) when your white blood counts remain low for so very long, they may NEVER get back up to pre treatment levels. She said that was okay, but, still, in my opinion, we should try to keep those white blood counts as high as we can. Rarely during my course of treatment was my white count over 2 and for the most part, even with Neupogen my ANC remained between .5 and .8.
Friole,
No disrepect taken, and I tried to objectively point out that different doctors have different cut-off values for Neupogen, something not all here do, often citing only their own medical team's approach. Hopefully I made that clear, but yes, my bias runs toward later intervention based on not only what my doctor said, but on some other well-known docs who have had patient's here -- Goofy's for example, I believe -- as well as the study I posted.
Your point on my multiple infections is a good one, except that they began almost from day one of treatment, before my ANC had a chance of dropping. I had the same thoughts myself actually on needing Neupogen, and therefore asked my medical team several times if Neupogen would help my continuing sinus and prostate infections and they said they didn't believe it would. And once again, when my ANC did hit "320" I was on the horn with my NP and was asked to wait a week because she was convinced they would bounce back up. Within two weeks they were over 1000. I'd have to check my notes but in reality my ANC was probably above 750 for the vast majority of treatment (during those infections) and certainly above 500.
Don't pretend to have the answers with this, but it has been others that have been complaining recently on the side effects of Neupogen, not me, since I've never taken it. Hopefully, your input and others will give Lilla a more balanced viewpoint on the issue.
Be well,
-- Jim
No disrepect taken, and I tried to objectively point out that different doctors have different cut-off values for Neupogen, something not all here do, often citing only their own medical team's approach. Hopefully I made that clear, but yes, my bias runs toward later intervention based on not only what my doctor said, but on some other well-known docs who have had patient's here -- Goofy's for example, I believe -- as well as the study I posted.
Your point on my multiple infections is a good one, except that they began almost from day one of treatment, before my ANC had a chance of dropping. I had the same thoughts myself actually on needing Neupogen, and therefore asked my medical team several times if Neupogen would help my continuing sinus and prostate infections and they said they didn't believe it would. And once again, when my ANC did hit "320" I was on the horn with my NP and was asked to wait a week because she was convinced they would bounce back up. Within two weeks they were over 1000. I'd have to check my notes but in reality my ANC was probably above 750 for the vast majority of treatment (during those infections) and certainly above 500.
Don't pretend to have the answers with this, but it has been others that have been complaining recently on the side effects of Neupogen, not me, since I've never taken it. Hopefully, your input and others will give Lilla a more balanced viewpoint on the issue.
Be well,
-- Jim
I started taking neupogen and although I don't like the stuff, it has picked me up, in a way. It makes me sore. I only had bone pain before I started neupogen. And I do think my low wbc were making me very blue and moody. However, you might try the reduced amont of interferon for a couple of weeks and see what that does on your CBC. I think you are doing the right thing in considering your options.
The point I forgot to elaborate on in my previous post had to do with the up and down nature of ANC. Certainly if my ANC had stayed around 300, my medical team probably would have put me on Neupogen. But it didn't, and apparently it bounces around for a lot of people as well, not just by my NP's word, but by others who have reported the same here. Therefore, it just seems reasonable to me not to jump on the Neupogen because of a single low test when in reality you may be over 1000 within a few weeks on your own.
-- Jim
-- Jim
Won't get into neup, other than to say I trust my hemo/onc - think they have my blood 'stuff' as their focus and the tx doc/liverheads watch my liver. PCP is the traffic cop. All of which is fine with me. I think it's great the doc's a lawyer and vice-versa. What a set of possibilities! Lawyer, heal thyself or he can have a fool for a client. I also know one, what a thirst for knowledge. Hey, only one more week, you're in the home stretch now. Hope you have grand kick-back plans.
FL - you hit a point here - that many of us try to override our doctors. We may actually know more than the local yokel GI's but we have got to put our faith, if guarded, in them.
I have often wondered why my counts both dropped and other's didn't - i have a bang-up immune system - rarely missing work in 20 or 30 years. So why did my whites tank so much? I think I attribute age, but never asked the hemotologist. The truth is I wish I had never sent my hemotologist that letter and study. It did offend her and she passed me off to her nurse. She did monitor the labs but I never had another meeting with her until the end of treatment. She basically let me take Neup once a week although if it were up to her I would have taken it twice a week. I don't know why she gave up lawyering to study medicine but she is a fastinating woman.
Jim - Snowybird has been having the worst adverse reaction to Neupogen of anyone on the board. I think I experienced some bone pain, but there again, it goes back to my particular system which I think is fairly insensitive (tough?). Only after I was done with the INF and RB and taking the Neup alone did i notice bone pain. As far as your infections - maybe you did have many right from the start of INF but I still think you would have been aided by a boost in your white counts. I (personally - just my opinion) think your liverheads did you a disservice.
FL - Damn DC for having that holiday -- extended the "season" til the 17th. I am one whooped dog. My biggest up coming event post season is a canoe trip thru Mariscal Canyon (in Big Bend -- at the very bend of the river) on April 28th. Ahhh if you have never seen the desert in bloom...... And then of course, there is my whirl wind trip to Dallas the next week to see the liverhdad.
Be well, Bean
I have often wondered why my counts both dropped and other's didn't - i have a bang-up immune system - rarely missing work in 20 or 30 years. So why did my whites tank so much? I think I attribute age, but never asked the hemotologist. The truth is I wish I had never sent my hemotologist that letter and study. It did offend her and she passed me off to her nurse. She did monitor the labs but I never had another meeting with her until the end of treatment. She basically let me take Neup once a week although if it were up to her I would have taken it twice a week. I don't know why she gave up lawyering to study medicine but she is a fastinating woman.
Jim - Snowybird has been having the worst adverse reaction to Neupogen of anyone on the board. I think I experienced some bone pain, but there again, it goes back to my particular system which I think is fairly insensitive (tough?). Only after I was done with the INF and RB and taking the Neup alone did i notice bone pain. As far as your infections - maybe you did have many right from the start of INF but I still think you would have been aided by a boost in your white counts. I (personally - just my opinion) think your liverheads did you a disservice.
FL - Damn DC for having that holiday -- extended the "season" til the 17th. I am one whooped dog. My biggest up coming event post season is a canoe trip thru Mariscal Canyon (in Big Bend -- at the very bend of the river) on April 28th. Ahhh if you have never seen the desert in bloom...... And then of course, there is my whirl wind trip to Dallas the next week to see the liverhdad.
Be well, Bean
thank you all for your comments; they mean so much and I do realize everyone reacts differently to tx and the drugs administered. I am thinking a little clearer today and will address the main issue with my doctor and that is communication. As mentioned, my lab work had the note 3/30/07 start neupogen/CBC 2 weeks. Tomorrow is two weeks and I didn't even know about this until I called my doctor on 4/6 and still was not told until I got hard copy of results 4/9, and then was not told until I inquired about the notation. My lab work back at end of February showed ANC count to be 689 and 3/28 lab work showed them at 694. Not a huge increase, but they are higher. I know the doctors can't spend large amounts of time with each patient, but I need to know WHY before I start filling myself with drugs. Boy, this HepC battle is a true roller coaster.
Friole: As far as your infections - maybe you did have many right from the start of INF but I still think you would have been aided by a boost in your white counts. I (personally - just my opinion) think your liverheads did you a disservice.
-------------------
Of course your're entitled to your opinion, but this thread made me go back to re-check my lab reports, and again I'll state that I found no correlation between my infections during treatment (mostly sinus and prostate) and my ANC levels. In fact, my ANC was well over 1000 when most of these infections occured That's an ANC level that would not have called for Neupogen even under the most conservative guidelines.
FL,
We have discussed the one verus 2 doctor approach before, and it seems to work well for you which is the important thing. However, I believe you did acknowledge at some point that you would have preferred a one doctor approach if you treatment doctor handled these things. But possibly I have things confused here.
-------------------
Of course your're entitled to your opinion, but this thread made me go back to re-check my lab reports, and again I'll state that I found no correlation between my infections during treatment (mostly sinus and prostate) and my ANC levels. In fact, my ANC was well over 1000 when most of these infections occured That's an ANC level that would not have called for Neupogen even under the most conservative guidelines.
FL,
We have discussed the one verus 2 doctor approach before, and it seems to work well for you which is the important thing. However, I believe you did acknowledge at some point that you would have preferred a one doctor approach if you treatment doctor handled these things. But possibly I have things confused here.
Bean; Lived in Az for many years. Loved, and became a student, of the desert. Beautiful places.
Jim: You're right. I would have preferred a one-stop shop. Ala the Gish Gang or others that have been mentioned here. But absent that availability, I've hitched my wagon to the current process and have developed a level of trust in the team. Psycholgically, it's important for me to have the faith in these guys.
Both: I'm confused by ANCs. My first go, I was below 1000 around week 14-16 or so. This time, at week 24, have not dipped below 1200. Wonder if it's change to Pegasys. Dunno. But, have made a concerted effort ot be 'more healthy' during this tx, diet, rest, some exercise. Box of chocolates.
Jim: You're right. I would have preferred a one-stop shop. Ala the Gish Gang or others that have been mentioned here. But absent that availability, I've hitched my wagon to the current process and have developed a level of trust in the team. Psycholgically, it's important for me to have the faith in these guys.
Both: I'm confused by ANCs. My first go, I was below 1000 around week 14-16 or so. This time, at week 24, have not dipped below 1200. Wonder if it's change to Pegasys. Dunno. But, have made a concerted effort ot be 'more healthy' during this tx, diet, rest, some exercise. Box of chocolates.
The way it was explained to me is that changes in ANC can have numerous reasons including infections themselves and the bodies defense to them. That might at least in part account for the difference in treatment experience. Either that or the "box of chocolates". LOL.
The thing about neutrophils is they should be at their highest while fighting infection. If your were only at 1000 during your infections, they were not working at capacity - they should have been more like 3000 or 4000. So teh neutropenia was inhibiting their capacity to do their job. Their half life is 4 hours I think I read.
"A true increase in neutrophil production usually reflects an infection, particularly a acute bacterial infection."
http://en.wikipedia.org/wiki/Neutrophil
http://www.mult-sclerosis.org/neutrophil.html
Now here's an interesting tidbit from Wikapedia -- Neutrophils gravitate to infections and invest particles. When called to action the form a superoxide that mutates to hydrogen peroxide and converts to chlorine bleach! How's that for a clean up job!
"A true increase in neutrophil production usually reflects an infection, particularly a acute bacterial infection."
http://en.wikipedia.org/wiki/Neutrophil
http://www.mult-sclerosis.org/neutrophil.html
Now here's an interesting tidbit from Wikapedia -- Neutrophils gravitate to infections and invest particles. When called to action the form a superoxide that mutates to hydrogen peroxide and converts to chlorine bleach! How's that for a clean up job!
I'm not saying treatment -- and possibly neutropenia -- made for difficult times during treatment. However, no one suggests taking Neupogen when ANC is over 1000, right? That's what I thought we were talking about, because that's where my ANC was for most of treatment. And then there's the study which says that interferon induced neutropenia is different from the neutropenia cancer patients have and is not associated with increased infection rates. BTW, as you probably know, Wikapedia, can be edited by anyone online, like you or me. So watch out, because I might change the Neutrophils page a bit to further my points :)
-- Jim
-- Jim
...about her friend Henley and I remembered how with low Neuts, I would get a scratch in the garden and before you knew it it was getting puffy and showing signs of inflamation. It is absolutely remarkable the defense mechanisms the body has under normal circumstances - get a scratch from a a rose thorn and it's like a call echos accross the kingdom "BREACH, BREACH, OUTER WALL BREACHED, and all these factories fire up and start cloning defense droids and delivering patching materials and all, and we just keep chugging along unaware, maybe shoving the injured hand into sacks of organic steer dung, which is like paratrooping in hit squads to help the breaching insurgents.... an example of that involuntary defense run amuck is the whole gag reflex thing.... what's up with that?
I answered your identical post on the other side so "Friole" wouldn't see
my answer:)
-- Jim
my answer:)
-- Jim
I was wondering about low wbc....I was relieved to hear that you treated with anc at 300. On my bloodwork last week my wbc was 1.3 with anc at .4 (which is 400 right?) My pcp runs my labs and faxes the results to the liver Dr. I haven't heard anything from either one (the pcp mailed me a copy as requested) I don't think my liver Dr. even looks at the labs untill I go in for app. (not till the end of May but I have more labs drawn before then) He already told me that he wouldn't give me neupogen because it can enlarge the spleen and mine is already enlarged.(Thus the low platelets) He would reduce the meds because neupogen could cause my spleen to rupture. My hgt was fortunatly up to 11.7. Maybe my wbc will come up on its own too...yours did didn't it. You never did take neupogen did you?
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