Aa
Stopping TX while waiting for Neupogen approval
I mainly lurk. I started TX for Hep C type 2B first week 1/09. I was <2.8 log IU at 4 weeks. I had rt labs done 2/27/07 and it showed wbc at 1.26. ( i have had 8 injections) I saw Dr 3/6 and was told to stop all treatment until approval for Neupogen. I was due to take Pegaysis SQ on 3/6 and to Dc ribovarin also. I offered to get RX and fill it out of pocket or reduce dose and dr refused. I am upset and not sure how to proceed. Dr says interruption in TX should not affect Sustained effect. Tx will just be extended at the end. I just wanted to vent and get any pointers. Thank you for listening. My Dr has treated a large number of hep C and I am wondering if I am just getting upset for no reason.
Rose
Rose
The link I gave you on my first post for the "Side Effect Handbook" didn't print right so here it is again....
http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf
Co
http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf
Co
"He was very firm and would not vary from his standard of care. Just discouraged at this moment and will start calling office Monday for med. Agree about the CBC being redrawn but when all of this is happening you are trying to quickly list off anything that you have read about decreasing dose, buying own med ect."
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I know...it can be very intimidating. When I became an anemia speaker, I was invited by the drug company a couple of days before I had to attend the speaker's program. I drove 3 hours after work on a Friday to get there. When I checked in to the hotel, there was a package waiting for me that contained a CD with slides that I was supposed to study because they were the same ones we would be expected to present the next day in front of everybody else. Of course the rest of the attendees had the slides for weeks.
The next morning when I walked in the conference room and read some of the sitting cards, I wanted to turn around and leave....many of them were doctors....professors.... managers of anemia clinics. I thought...I'm just a nurse, there's no way...
And then I remembered the lady back at the clinic where I worked that was so weak from the anemia that she couldn't get up to fix a sandwich, so she'd gone hungry. And I thought about all the others.
So I said to myself....when I go up on the stage, they wilI be going with me. I won't be alone.
And that's what I want you to think too. You're not alone. You have all of us. You may not be familiar with treatment but we are.
Write down what you want to tell your doctor and have it right in front of you....and act calm and confident even if you're not.
As Jim says, if you're willing to pay for a Neupogen injection out of your own pocket, your doctor should have no problem with that.
Something else you can do is call your insurance company and talk to customer service and explain the urgency of getting thed Neupogen approved. Tell them that you already cleared the virus and if the treatment is interrupted now because you can't get the Neupogen quickly enough, the virus will come back and you'll have to start the treatment all over again. Believe me, they won't want you to have to start all over again. It would cost them more.
Co
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I know...it can be very intimidating. When I became an anemia speaker, I was invited by the drug company a couple of days before I had to attend the speaker's program. I drove 3 hours after work on a Friday to get there. When I checked in to the hotel, there was a package waiting for me that contained a CD with slides that I was supposed to study because they were the same ones we would be expected to present the next day in front of everybody else. Of course the rest of the attendees had the slides for weeks.
The next morning when I walked in the conference room and read some of the sitting cards, I wanted to turn around and leave....many of them were doctors....professors.... managers of anemia clinics. I thought...I'm just a nurse, there's no way...
And then I remembered the lady back at the clinic where I worked that was so weak from the anemia that she couldn't get up to fix a sandwich, so she'd gone hungry. And I thought about all the others.
So I said to myself....when I go up on the stage, they wilI be going with me. I won't be alone.
And that's what I want you to think too. You're not alone. You have all of us. You may not be familiar with treatment but we are.
Write down what you want to tell your doctor and have it right in front of you....and act calm and confident even if you're not.
As Jim says, if you're willing to pay for a Neupogen injection out of your own pocket, your doctor should have no problem with that.
Something else you can do is call your insurance company and talk to customer service and explain the urgency of getting thed Neupogen approved. Tell them that you already cleared the virus and if the treatment is interrupted now because you can't get the Neupogen quickly enough, the virus will come back and you'll have to start the treatment all over again. Believe me, they won't want you to have to start all over again. It would cost them more.
Co
I need to clarify...I felt that I got very good treatment from my doctors. However I was dealing with the parameters of a clinical trial and a trial nurse who was an angel but didn't necessarily know everything. However when I insisted on something, she passed me on to the doctor to make a judgment call. I was happy with most of my results except for the neupogen decision. I really did like my treatment doctors and respected their knowledge however still had my own ideas on what I thought was best for me. I did end up gaining their respect and they gained mine and we dialogued very well. I would treat with that same doctor again in a heartbeat. It did take ongoing advocacy on my part even with very competent doctors.
Trish
Trish
I absolutely echo Jim on this one. Your first priority is to keep your adherence going with your treatment drugs. I'd switch your focus to getting that neupogen started since he seems to be digging in his heels on stopping treatment until the neupogen is in place.
Here is an article on adherence for you:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Adherence.pdf
There are plenty of studies that show the correlation between adherence and SVR outcomes, particularly in the earlier stages. Your doctor's statement is false.
If you do a search on HCV 80/80/80 you will find many articles and studies on this. The 80/80/80 rule is basically a minimum threshold of 80% of the treatment drugs 80% of the time...emphasis on minimum. The real goal is to shoot for 100% of the treatment drugs 100% of the time as long - as long as your health is not in jeopardy of course.
I don't know when your last Peg injection was, I assume your next is in a week. I would press for the neupogen prescription first thing Monday morning - it doesn't matter who foots the bill, the results are the same.
I have to say this .. personally I would keep the ribavirin going while you work this out but ONLY if I felt my HGB was not an issue at all. As Jim mentioned, we don't have your medical history or stats in front of us so it would be irresponsible to suggest that. Ribavirin impacts the hemoglobin/red blood cells and what status your HGB is at is unclear. What IS your HGB incidentally?
And I would add to my strategy to look for a different doctor. I missed in your first post that you said you were a Geno 2. It is incredibly inconceivable that a doctor would not do a 4 week PCR for a Geno 2 or Geno 3 as this is even more critical for a Geno 2 or Geno 3, that is usually the point at which a decision is made to extend treatment if they have not cleared. To not do a PCR until Week 12 for a Geno 2 or 3 is astonishing for someone who has treated many Hep C patients. I shudder to think how his other patients have been treated.
While this may seem a difficult thing to do, at this point in your treatment, I do believe that if you call for a 2nd opinion and you explain the direction your doctor is taking, a doctor who knows what he's doing will agree to see you. It is at least worth a shot.
I know this isn't easy. I dealt with various issues throughout my treatment where I had to advocate for myself. I was on a clinical trial so switching to a different doctor was an even bigger decision for me and I opted to stick with the clinical trial and just keep fighting my way through. I put up with a reduced interferon mid-treatment for a number of weeks, asking my doctor for neupogen the whole time with him refusing as he doesn't like it much and then him finally agreeing when my whites didn't rebound. I was pulled from treatment the same week I started neupogen at 34 weeks due to clinical trial requirements however I remain UND at 12 weeks post treatment so I am fortunate.
Good luck.
Trish
Here is an article on adherence for you:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Adherence.pdf
There are plenty of studies that show the correlation between adherence and SVR outcomes, particularly in the earlier stages. Your doctor's statement is false.
If you do a search on HCV 80/80/80 you will find many articles and studies on this. The 80/80/80 rule is basically a minimum threshold of 80% of the treatment drugs 80% of the time...emphasis on minimum. The real goal is to shoot for 100% of the treatment drugs 100% of the time as long - as long as your health is not in jeopardy of course.
I don't know when your last Peg injection was, I assume your next is in a week. I would press for the neupogen prescription first thing Monday morning - it doesn't matter who foots the bill, the results are the same.
I have to say this .. personally I would keep the ribavirin going while you work this out but ONLY if I felt my HGB was not an issue at all. As Jim mentioned, we don't have your medical history or stats in front of us so it would be irresponsible to suggest that. Ribavirin impacts the hemoglobin/red blood cells and what status your HGB is at is unclear. What IS your HGB incidentally?
And I would add to my strategy to look for a different doctor. I missed in your first post that you said you were a Geno 2. It is incredibly inconceivable that a doctor would not do a 4 week PCR for a Geno 2 or Geno 3 as this is even more critical for a Geno 2 or Geno 3, that is usually the point at which a decision is made to extend treatment if they have not cleared. To not do a PCR until Week 12 for a Geno 2 or 3 is astonishing for someone who has treated many Hep C patients. I shudder to think how his other patients have been treated.
While this may seem a difficult thing to do, at this point in your treatment, I do believe that if you call for a 2nd opinion and you explain the direction your doctor is taking, a doctor who knows what he's doing will agree to see you. It is at least worth a shot.
I know this isn't easy. I dealt with various issues throughout my treatment where I had to advocate for myself. I was on a clinical trial so switching to a different doctor was an even bigger decision for me and I opted to stick with the clinical trial and just keep fighting my way through. I put up with a reduced interferon mid-treatment for a number of weeks, asking my doctor for neupogen the whole time with him refusing as he doesn't like it much and then him finally agreeing when my whites didn't rebound. I was pulled from treatment the same week I started neupogen at 34 weeks due to clinical trial requirements however I remain UND at 12 weeks post treatment so I am fortunate.
Good luck.
Trish
I ran ino the prob of waiting for Neup. approval. My Dr also wanted me to stop tx. I just flat out refused, I had the Meds and was going to use them. When I offered to pay out of pocket he had NO problem. They even ran down the Nuep. for me as few kept it on hand. $287 for one shot. jerry
You''ve been given a lot of good advice and information but at this point what you need is to focus on a strategy that will get you that Peg injection ASAP and allow you to start taking ribavirin again, which I'm not sure why was stopped anyway since the riba has nothing to do with your low ANC.
Of course one strategy is simply to take the injection as some other have, but it would be irresponsible to recommend that strategy there may be something in your medical history that your doctor knows about and we do not.
So, with that off the table you are left to deal with a doctor who appears to function like a one-way street -- his way.
Your best shot IMO is to press for the Neupogen prescription Monday morning and pay for the first few shots out of pocket if this is within you means. Just be very firm and say that you do not want to hold up treatment because of an insurance issue and that's your right.
You might also start compiling a list of other hepatologists in your area -- not affiliated with this particular hospital. In fact, if you tell us what area you're in, maybe someone here has a suggestion. Then, if you can't get the Neupogen Monday, start calling for an appointment. Often a doctors office will squeeze you in if you convey a sense of urgency.
Good luck.
-- Jim
Of course one strategy is simply to take the injection as some other have, but it would be irresponsible to recommend that strategy there may be something in your medical history that your doctor knows about and we do not.
So, with that off the table you are left to deal with a doctor who appears to function like a one-way street -- his way.
Your best shot IMO is to press for the Neupogen prescription Monday morning and pay for the first few shots out of pocket if this is within you means. Just be very firm and say that you do not want to hold up treatment because of an insurance issue and that's your right.
You might also start compiling a list of other hepatologists in your area -- not affiliated with this particular hospital. In fact, if you tell us what area you're in, maybe someone here has a suggestion. Then, if you can't get the Neupogen Monday, start calling for an appointment. Often a doctors office will squeeze you in if you convey a sense of urgency.
Good luck.
-- Jim
Thank you for all the info. You always wish you had that the time of the visit. I get my blood work done the in the AM. Seven days after last injection prior to next so he has a entire week to review. I asked about decreasing the shot and again he said no. He was very firm and would not vary from his standard of care. Just discouraged at this moment and will start calling office Monday for med. Agree about the CBC being redrawn but when all of this is happening you are trying to quickly list off anything that you have read about decreasing dose, buying own med ect. Please let me tell you again thank you. Rose
"My Dr has treated a large number of hep C"
He may have treated lots of people but I doubt he did it successfully because what he says is totally WRONG.
Interruption of treatment DOES affect SVR. The virus will most likely come back and you'll have to start all over again, not just extend.
I really hate that a doctor would lie to a patient this way. (But he can't lie to all of us).
And why is he stopping the Ribavirin? That has nothing to do with the neutrophils being low.
"Another frustrations is that he had the lab work for over 7 days before the appt. it was not like i just had it done that day before the appt. and the lab called with a critical value a week ago.. "
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If it had already been a week, then he should have retested you. The neutrophils sometimes go back up on their own.
"He did point out that I could go Septic if I con't with shots. Well, what do you say to that "
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Here's what you tell him....
That according to the "Side Effect Handbook" written by hepatologists including Dr McHutchison (who I'm sure he knows), studies have shown that people with low neutrophils do not have any more infections than people with a normal neutrophil count.
http://www.projectsinknowledge.com/Init ... ndbook.pdf
Chapter on Neutropenia....Page 87 says......
"There is a theoretic concern that neutropenia will increase the propensity to develop opportunistic infections. However, peginterferon alfa-2b has been in use for years, and collective experience has not demonstrated a clinically significant association between neutropenia and infection in patients treated for hepatitis C."
Of course you would still watch for any symptoms of infections (like fever, productive cough, sinus drainage, burning when you urinate, wounds that look infected, etc) and report them to your doctor right away so he can prescribe antibiotics.
And of course, stay away from crowded places, people who are ill, and wash your hands alot.
The handbook also recommends that you don't have the blood test too close to the day you take the Peg injection because that will cause low readings.
It says.....
"Note: lower neutrophil counts will be recorded if the blood for the CBC is drawn within 24 to 72 hours of peginterferon administration. Consider drawing the CBC 1 to 2 days BEFORE peginterferon administration."
For example, if you have your injection on a Thursday and have the blood test done the next day (Friday), the neutrophils may be low. Instead, you should have the blood test done several days after the injection....let's say six days later.. on Wednesday, the day before the next shot is due.
You could also ask your doctor if you can take half the shot.
Wishing you the best of luck,
Co
He may have treated lots of people but I doubt he did it successfully because what he says is totally WRONG.
Interruption of treatment DOES affect SVR. The virus will most likely come back and you'll have to start all over again, not just extend.
I really hate that a doctor would lie to a patient this way. (But he can't lie to all of us).
And why is he stopping the Ribavirin? That has nothing to do with the neutrophils being low.
"Another frustrations is that he had the lab work for over 7 days before the appt. it was not like i just had it done that day before the appt. and the lab called with a critical value a week ago.. "
--------------------------
If it had already been a week, then he should have retested you. The neutrophils sometimes go back up on their own.
"He did point out that I could go Septic if I con't with shots. Well, what do you say to that "
-------------------------
Here's what you tell him....
That according to the "Side Effect Handbook" written by hepatologists including Dr McHutchison (who I'm sure he knows), studies have shown that people with low neutrophils do not have any more infections than people with a normal neutrophil count.
http://www.projectsinknowledge.com/Init ... ndbook.pdf
Chapter on Neutropenia....Page 87 says......
"There is a theoretic concern that neutropenia will increase the propensity to develop opportunistic infections. However, peginterferon alfa-2b has been in use for years, and collective experience has not demonstrated a clinically significant association between neutropenia and infection in patients treated for hepatitis C."
Of course you would still watch for any symptoms of infections (like fever, productive cough, sinus drainage, burning when you urinate, wounds that look infected, etc) and report them to your doctor right away so he can prescribe antibiotics.
And of course, stay away from crowded places, people who are ill, and wash your hands alot.
The handbook also recommends that you don't have the blood test too close to the day you take the Peg injection because that will cause low readings.
It says.....
"Note: lower neutrophil counts will be recorded if the blood for the CBC is drawn within 24 to 72 hours of peginterferon administration. Consider drawing the CBC 1 to 2 days BEFORE peginterferon administration."
For example, if you have your injection on a Thursday and have the blood test done the next day (Friday), the neutrophils may be low. Instead, you should have the blood test done several days after the injection....let's say six days later.. on Wednesday, the day before the next shot is due.
You could also ask your doctor if you can take half the shot.
Wishing you the best of luck,
Co
Sorry rose, looks like my brain fog is worse than yours. You pointed out your 4 wk PCR was <2.8 log IU. My first 12 wk PCR was based on a the log 10 value of HCV RNA is 2.9. Reference value was 1.9. VL was 793 and I think the sensitivity was <75 -200 IU/ml
First 24 wk PCR was a reference range of 1.70 Log IU/ml and I was below <50 IU/ml
Second 24 was was LabCorp below <10, UND
PCR's are confusing but I think I understand what you are saying now. It would be nice to now what the sensitivity of the PCR was they used just for your peace of mind.
Trin
First 24 wk PCR was a reference range of 1.70 Log IU/ml and I was below <50 IU/ml
Second 24 was was LabCorp below <10, UND
PCR's are confusing but I think I understand what you are saying now. It would be nice to now what the sensitivity of the PCR was they used just for your peace of mind.
Trin
Trinity, your case may have been different or perhaps initial dosing wasn't correct but Neup, unlike Procrit, generally works within a day or so.
Rose,
I didn't repsond as quickly to the Neup as most do. It took a couple weeks for me and my doc did have to bump up my dosage but it is fast acting for most.
Still confused as to whether you are UND or only had a 2 log drop? You're 4 wk PCR should tell you and make sure you clarify that with your doctor.
Trinity
I didn't repsond as quickly to the Neup as most do. It took a couple weeks for me and my doc did have to bump up my dosage but it is fast acting for most.
Still confused as to whether you are UND or only had a 2 log drop? You're 4 wk PCR should tell you and make sure you clarify that with your doctor.
Trinity
I just want to clear up that I am fortunate (if you call it that) to have Geno type 2 B. So I am looking at 24 weeks of TX.
Another frustrations is that he had the lab work for over 7 days before the appt. it was not like i just had it done that day before the appt. and the lab called with a critical value a week ago..
Again the suppport here is a big help. I have followed the med routine to a T and now am at a loss over how to spur others. I even have a 2 week supply of pegasys in case..
Rose
Another frustrations is that he had the lab work for over 7 days before the appt. it was not like i just had it done that day before the appt. and the lab called with a critical value a week ago..
Again the suppport here is a big help. I have followed the med routine to a T and now am at a loss over how to spur others. I even have a 2 week supply of pegasys in case..
Rose
Since none of us are doctors, nor do we have your medical records, no one here can really make a call whether you need Neupogen or not and whether it's safe to continue with treatment. For that you will have to rely on a doctor.
That said, if the only issue delaying your injections is insurance approval, I think we are qualified to say that your doctor has no right to hold up injections if you're willing to pay out of pocket until the insurance kicks in. This is something you have a right to demand. Immediately.
And I think we also can say that your doctor is wrong that missing a few weeks (if I read you correctly) will not affect treatment. Missing a few weeks of injections could potentially put you into a viral breakthrough, or technically a "relapse" since you're basically off the drugs. Dr. Dieterich talks about this in the professional forum if you want to spend some time flipping through his posts. Just because your doctor tells you it won't make a diffference does not mean he is correct.
-- Jim
That said, if the only issue delaying your injections is insurance approval, I think we are qualified to say that your doctor has no right to hold up injections if you're willing to pay out of pocket until the insurance kicks in. This is something you have a right to demand. Immediately.
And I think we also can say that your doctor is wrong that missing a few weeks (if I read you correctly) will not affect treatment. Missing a few weeks of injections could potentially put you into a viral breakthrough, or technically a "relapse" since you're basically off the drugs. Dr. Dieterich talks about this in the professional forum if you want to spend some time flipping through his posts. Just because your doctor tells you it won't make a diffference does not mean he is correct.
-- Jim
He was Very firm in saying NO! Said a very weeks would not make any difference in TX. If I had not been lurking here I would not have know any better. He did point out that I could go Septic if I con't with shots. Well, what do you say to that.... He is tired in with a teaching hospital but I see him at his clinic. Platelets are 87 thou/cmm
Rose
Rose
Dr says interruption in TX should not affect Sustained effect. Tx will just be extended at the end. I
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This isnt true. Treatment interruption potentially can affect SVR or "sustained effect" as you call it. And extending at the end of treatment is not at all the same as a continuous stream of treatment.
Several things are unclear. Do you know your ANC (absolute neutrophils)? In general, if it's not below 300, many liver specialists would not consider this an emergency. In other words you may not even need it.
But that aside, and assuming you should take the Neupogen, what is most troubling and confusing is why your doctor won't let you pay for the Neup out of your pocket until the insurance is approved. That way you can take the Neup right away without missing an injection, as Neup works very fast. Frankly, if your doc prescribes the drug, it's none of his business if you pay for it out of your pocket or through insurance. I wouldn't stand for this.
Based on what you've said, I'd seriously start shopping around for another doctor and it should be a liver specialist (hepatologist). But first things first and the first thing you want to do is get the Neup (preferably today or Monday) so you can take your injection without interruption.
-- Jim
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This isnt true. Treatment interruption potentially can affect SVR or "sustained effect" as you call it. And extending at the end of treatment is not at all the same as a continuous stream of treatment.
Several things are unclear. Do you know your ANC (absolute neutrophils)? In general, if it's not below 300, many liver specialists would not consider this an emergency. In other words you may not even need it.
But that aside, and assuming you should take the Neupogen, what is most troubling and confusing is why your doctor won't let you pay for the Neup out of your pocket until the insurance is approved. That way you can take the Neup right away without missing an injection, as Neup works very fast. Frankly, if your doc prescribes the drug, it's none of his business if you pay for it out of your pocket or through insurance. I wouldn't stand for this.
Based on what you've said, I'd seriously start shopping around for another doctor and it should be a liver specialist (hepatologist). But first things first and the first thing you want to do is get the Neup (preferably today or Monday) so you can take your injection without interruption.
-- Jim
Grrr. It is very frustrating to read such things about a doctor that treats many Hep C patients.
He does not do a 4 week test?
He thinks that suspending treatment prior to 12 weeks will have no impact on the outcome?
He will just tack the weeks onto the end as if the total weeks you do adding up to 48 weeks is sufficient rather than keeping your treatment drugs constant over the 48 weeks as much as possible, as in full adherence? Like as if we can take a two week vacation and just tack a couple weeks on the end and that's okay??
If your Absolute Neutrophil Count is the 0.3 figure, my personal opinion is that neupogen is definitely a good idea for you particular since you have quite a ways to go yet and that is quite a low ANC count. What I DON'T get is .. what does it matter who pays for it ????? Is it magically more effective if the insurance company pays for it?
If I were you, I would *insist* on starting the neupogen and ask him just that - does the insurance company paying for it make it more effective?
My understanding is that neupogen has a pretty quick response while procrit takes weeks so I'm thinking you should see results relatively fast.
My personal opinion, for what it's worth, is to insist to your doctor that you start the nuepogen and do not stop treatment.You have a lovely RVR - UND at 4 weeks into treatment for a Geno 1. That is the golden ticket we all hope for. I would not want to jeopardize that by abruptly stopping treatment at this point. There is plenty of information out there based on studies that adherence in the first 12 weeks is particularly critical. I am short for time right now and will post some later. I hope others will do the same.
I would also suggest you strongly consider seeking a second opinion and another doctor so that you can switch if this one persists in these kinds of decisions about your treatment that obviously do not sit well with your gut.
Your gut has good instincts. You did very well to insist on your 4 week PCR, bravo to you. Trust yourself more and keep advocating for your own care. Again, you have this lovely RVR we all covet.
Best of luck to you.
Trish
He does not do a 4 week test?
He thinks that suspending treatment prior to 12 weeks will have no impact on the outcome?
He will just tack the weeks onto the end as if the total weeks you do adding up to 48 weeks is sufficient rather than keeping your treatment drugs constant over the 48 weeks as much as possible, as in full adherence? Like as if we can take a two week vacation and just tack a couple weeks on the end and that's okay??
If your Absolute Neutrophil Count is the 0.3 figure, my personal opinion is that neupogen is definitely a good idea for you particular since you have quite a ways to go yet and that is quite a low ANC count. What I DON'T get is .. what does it matter who pays for it ????? Is it magically more effective if the insurance company pays for it?
If I were you, I would *insist* on starting the neupogen and ask him just that - does the insurance company paying for it make it more effective?
My understanding is that neupogen has a pretty quick response while procrit takes weeks so I'm thinking you should see results relatively fast.
My personal opinion, for what it's worth, is to insist to your doctor that you start the nuepogen and do not stop treatment.You have a lovely RVR - UND at 4 weeks into treatment for a Geno 1. That is the golden ticket we all hope for. I would not want to jeopardize that by abruptly stopping treatment at this point. There is plenty of information out there based on studies that adherence in the first 12 weeks is particularly critical. I am short for time right now and will post some later. I hope others will do the same.
I would also suggest you strongly consider seeking a second opinion and another doctor so that you can switch if this one persists in these kinds of decisions about your treatment that obviously do not sit well with your gut.
Your gut has good instincts. You did very well to insist on your 4 week PCR, bravo to you. Trust yourself more and keep advocating for your own care. Again, you have this lovely RVR we all covet.
Best of luck to you.
Trish
Being a geno 2 and und at week 4 i would really push against either stoping or dose reduction. Sense your being tx at a teaching hospital is there any way your doctor could provide you with at lease one shot to hold you over. As for your platelets i would love to see those numbers. Wishing you the best Rose
Trin, i've never been on Neupogen but if i understand it right it is really a fast acting drug that bring your anc up fast, as where procrit can take a few weeks???
Trin, i've never been on Neupogen but if i understand it right it is really a fast acting drug that bring your anc up fast, as where procrit can take a few weeks???
Again thanks for your help. I just needed some validation of doing the right thing. The brain fog is so hard on me. Thank you for also pointing out the cost of the Neupogen. It means a lot to me that people take time out to help use newbies. I have had mild symptoms. my weight is staying the same, tired out and a little anxious. So I have been fortunate. Hopefully I will learn enough to help others someday as you have helped me. When I questioned about viral load he said that I was undetectable. But the test doesn't not seen to detect as fine a load as others i have read about. I will be calling the office freq next week about the neupogen.
Rose
Rose
If I'm doing my math correctly, that puts your ANC a little below 400 which is very low.
Platelets are low but not critical and low is to be expected.
I thought you had stated a 2.8 log drop at wk 4 but in your second post you stated your doctor says you were UND at wk 4.
ANC may jump back up which does happen, but if you have had a steady decline with each blood test that will more than likely not happen. I can understand your doctor trying to avoid having to stop tx altogether but I certainly hope he hussles and gets you the Neupogen immediately. You do need it.
Good Luck and hang in there. Brain fog is common and totally understand.
Hoping your tx goes well,
Trinity
Platelets are low but not critical and low is to be expected.
I thought you had stated a 2.8 log drop at wk 4 but in your second post you stated your doctor says you were UND at wk 4.
ANC may jump back up which does happen, but if you have had a steady decline with each blood test that will more than likely not happen. I can understand your doctor trying to avoid having to stop tx altogether but I certainly hope he hussles and gets you the Neupogen immediately. You do need it.
Good Luck and hang in there. Brain fog is common and totally understand.
Hoping your tx goes well,
Trinity
Thank you for your help. I do not feel as sharp mentally as I once did and more easily confused. I could not even figure how to post to the lab trackers. Plat 87 Neurtophils 26 Neuts# 0.3 Bands 2 WBC 1.28
The dr told me that my viral load was undetected at 4 weeks. Which I asked to have done as he does not do one until 12 weeks. It is hard to read and absorb when I feel that I am not as sharp as I once was.
Again thank you for your help. If I can ad any other figures please let me know.
The dr told me that my viral load was undetected at 4 weeks. Which I asked to have done as he does not do one until 12 weeks. It is hard to read and absorb when I feel that I am not as sharp as I once was.
Again thank you for your help. If I can ad any other figures please let me know.
I was not UND by wk 12 and that may very well be why I did reach UND.
Correction: "didn't" reach UND
Correction: "didn't" reach UND
What is you ANC? Most doctors will not start Neupogen until ANC is below 500. Your wbc is low, however, I'm on Neupogen and your count is higher than mine.
Did you doctor mention anything about your platelet count being low.
ANC (Absolute Neutrophil Count) is what doctors use to determine whether Neupogen is necessary.
Doctors have different thresholds they use to determine when a rescue like Neupogen is necessary or when it's time to dose reduce or skip a dose.
I disagree with your doctor. Skipping peg doses before becoming UND can impact greatly on the outcome of your treatment.
I was told to dose reduce peg wks 7-8 and because of low ANC and platelets. My ANC was around 700 and my platelets were around 50,000. If I knew then what I know now I would have never done it. My local doctor was an idiot and my Atlanta doctor confirmed that. I was not UND by wk 12 and that may very well be why I did reach UND. My doctor in Atlanta seems to think so.
I don't understand why your doctor won't let you buy the Neup out of pocket for now either.
4 injections is around $1900.00 or at least that is my insurance is charged and if that is
not a problem for you I see no reason why your doctor should refuse.
I would be unrelenting with your doctors office to get you that Neup immediately.
I can't tell you not to skip doses, but your doctor is wrong about you'll be fine. Not to say it may not make a difference but I firmly believe it will.
Post your ANC and others will comment as well.
Neup takes several weeks to kick in and it's very concerning when a doctor says stop injections, it won't effect SVR.
I think being upset is merited.
BTW, some feel ANC can go as low as 200 without effecting the immune system but that wasn't the case with me. I could not fight infection off anymore at 400.
Trinity
Did you doctor mention anything about your platelet count being low.
ANC (Absolute Neutrophil Count) is what doctors use to determine whether Neupogen is necessary.
Doctors have different thresholds they use to determine when a rescue like Neupogen is necessary or when it's time to dose reduce or skip a dose.
I disagree with your doctor. Skipping peg doses before becoming UND can impact greatly on the outcome of your treatment.
I was told to dose reduce peg wks 7-8 and because of low ANC and platelets. My ANC was around 700 and my platelets were around 50,000. If I knew then what I know now I would have never done it. My local doctor was an idiot and my Atlanta doctor confirmed that. I was not UND by wk 12 and that may very well be why I did reach UND. My doctor in Atlanta seems to think so.
I don't understand why your doctor won't let you buy the Neup out of pocket for now either.
4 injections is around $1900.00 or at least that is my insurance is charged and if that is
not a problem for you I see no reason why your doctor should refuse.
I would be unrelenting with your doctors office to get you that Neup immediately.
I can't tell you not to skip doses, but your doctor is wrong about you'll be fine. Not to say it may not make a difference but I firmly believe it will.
Post your ANC and others will comment as well.
Neup takes several weeks to kick in and it's very concerning when a doctor says stop injections, it won't effect SVR.
I think being upset is merited.
BTW, some feel ANC can go as low as 200 without effecting the immune system but that wasn't the case with me. I could not fight infection off anymore at 400.
Trinity
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