Aa
Continue treatment or not???
HELP - this is my first time posting a question although I have been observing for some time. I will try to be succinct as it seems as though you all are so knowledgeable!!! I am 46, weigh 215lbs, @ 5ft 3inches fat as you can see. I started treatment for my Hep C Genotype 1A with a plan of going 48 weeks 1200 Riba/day and Interferon 1x/wk.
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right? OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99. I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.
She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx. So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.
The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return. I am having a hard time finding this information online and wondered if this is something that others are experienced with? She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return. She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.
Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year? OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while? She said no.
So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know. Even though I have been watching from afar your comments and conversations have boosted me far more than I could say. Thanks for any help or info you can offer.
Tracy Hopkins
Viral load started at approx. 700,000 oh by the way my cirohsis (I can never spell that) is stage 4 of 4 - that ***** right? OK - onward...At 4 wks my viral load went down to 3,600 and I am now at week 12 and it is still detectable at 99. I am not having horrible horrible side effects but my body is not tolerating too well the meds - my WBC is 2.2, my RBC is 3.27, hemoglobin 10.6 and hematocrit 31.4 - ok so studies say to lower riba by 200mg if my hemo goes lower than 10 and hematocrit lower than 30 - I know it is a fine line but my nurse practitioner has lowered me from 1200 to 800 and ordered me to discontinue my interferon because my WBC is so low.
She advised me that I COULD continue on w/tx if i want to and try the meds to increase WBC and HEMO (Procrit) but she said it is not a good sign that I am having to be boosted up by those meds - as I will have to continue them for the duration of tx. So as of now I can take only 800mg riba and NO interferon for at least 2 weeks until my #'s come up.
The main question and most troublesome of all is that she told me that they now know that anyone who is NOT Virus non-detectable at 12 weeks has only a 1% chance of svr post meds which means 99% chance of virus return. I am having a hard time finding this information online and wondered if this is something that others are experienced with? She said she did not want to take away all hope but she is a #'s person and if it were her (which she acknowledged it is not) it would be hard to go through so many weeks of hell just to have the virus return. She said that she has NEVER had a patient who had ANY virus detected at 12 weeks complete tx and have SVR???.
Of course my question was well will it not do any good to have the virus out of my system at ALL like even for a year? OK so those of you who think like I do know that my real question was will it buy me another year to live if it is gone for even a while? She said no.
So I am considering getting a 2nd opinion but before I do that I wanted to check in with the people who are living the issue like me and who are really the most in the know. Even though I have been watching from afar your comments and conversations have boosted me far more than I could say. Thanks for any help or info you can offer.
Tracy Hopkins
There's much debate and disagreement about ANC levels on the forum.
I can only speak to my experience and my hepa's guidelines. Unlike in many studies, it was made clear to me that my SOC tx plan would include neupogen and procrit, if needed.
Officially, my nurse was going to go on alert at 500 but not necessarily intervene until 300. So her cut-off is much lower than the studies Newleaf mentions. My neuts bounced around so much, we couldn't tie it down from one week to the next. She said neupogen acts quickly.
Not every team is this 'cavalier' but it worked for me, I never did get sick with an infection and I went as low as 500 before it bounced back without rescue drugs. It was actually normal at EOT.
It would be horrific to have a kidney infection, unbearable, but I didn't get sick at all during tx, despite my nasty low numbers. My family did, despite normal numbers.
I have no idea if I was lucky or typical.
I can only speak to my experience and my hepa's guidelines. Unlike in many studies, it was made clear to me that my SOC tx plan would include neupogen and procrit, if needed.
Officially, my nurse was going to go on alert at 500 but not necessarily intervene until 300. So her cut-off is much lower than the studies Newleaf mentions. My neuts bounced around so much, we couldn't tie it down from one week to the next. She said neupogen acts quickly.
Not every team is this 'cavalier' but it worked for me, I never did get sick with an infection and I went as low as 500 before it bounced back without rescue drugs. It was actually normal at EOT.
It would be horrific to have a kidney infection, unbearable, but I didn't get sick at all during tx, despite my nasty low numbers. My family did, despite normal numbers.
I have no idea if I was lucky or typical.
In the studies, safety cut-off is 750 (.75) for ANC. Calls for dose reduction if no filgrastim is used. Not everyone gets a bacterial infection from low neutrophils, but some of us do. I got a kidney infection when neuts dropped to 558. Never had a kidney infection in my whole life; don't ever want to have another one. Besides the pain and high fevers, antibiotics interact with my meds and are nearly unbearable to take. .70 IS tanked. Bad idea to ignore ANC. Might be okay, might get very sick.
I'm wondering if you've made your phone call to the doctor or better yet, been in to see him in person. Any update?
As you can see from the input on your thread, this is a complex issue, especially given you're a stage four, were underdosed on riba from the outset and have a BMI of 38.
The stickler for me is why your nurse would have said you only have a 1% chance to SVR. This raises a red flag to me - it's either an error or misunderstanding. It makes me question her level of expertise. Did she explain?
Jenny brings up an important point that I didn't know, that stage fours may be prone to plummeting numbers more than others.
Still, note that Pam is a stage four (and possibly insulin-resistant) and taking huge doses by comparison. She is in the hands of a very knowledgeable team closely monitoring her and treating her aggressively because of her stage four. The quality and expertise of your medical team is crucial.
I don't understand the rationale for underdosing your riba from the get go (12 mg per kilo), given you say you have no other health issues. This could have played a role in your not reaching UND by week twelve, even though you were very close (99).
Have you been tested for insulin-resistance? Given your BMI of 38, it is possibly something important to consider in your treatment plan, along with your low riba dosage.
I would not or cannot advise anyone what to do but I myself would not skip a dose before reaching UND, as long as my medical team were monitoring me like a hawk.
Is there something else that may be a factor?
As you can see from the input on your thread, this is a complex issue, especially given you're a stage four, were underdosed on riba from the outset and have a BMI of 38.
The stickler for me is why your nurse would have said you only have a 1% chance to SVR. This raises a red flag to me - it's either an error or misunderstanding. It makes me question her level of expertise. Did she explain?
Jenny brings up an important point that I didn't know, that stage fours may be prone to plummeting numbers more than others.
Still, note that Pam is a stage four (and possibly insulin-resistant) and taking huge doses by comparison. She is in the hands of a very knowledgeable team closely monitoring her and treating her aggressively because of her stage four. The quality and expertise of your medical team is crucial.
I don't understand the rationale for underdosing your riba from the get go (12 mg per kilo), given you say you have no other health issues. This could have played a role in your not reaching UND by week twelve, even though you were very close (99).
Have you been tested for insulin-resistance? Given your BMI of 38, it is possibly something important to consider in your treatment plan, along with your low riba dosage.
I would not or cannot advise anyone what to do but I myself would not skip a dose before reaching UND, as long as my medical team were monitoring me like a hawk.
Is there something else that may be a factor?
ANC in not critical enough to stop interferon or even reduce at this point. Neup is fast acting and you do not need it yet. Platelets are still ok too. If ANC tanks, have the neup ready to go but you'll need to be monitored very closely regardless because of your liver stage.
You're right, I missed that part. They always want you to use the neupogen before the interferon and usually do more bloodwork to see that it has worked to bring up the neuts. It's possible that it might not work in you (but it usually does) and then they'd need to reduce the interferon to correct ANC. You never take the 2 shots on the same day. I don't know if it's a safety issue or just a monitoring issue. A few days delay on the interferon will also improve your numbers.
Another thing to think about is that as the interferon kills virussed cells, it replaces them with clean new liver cells. As long as the virus is reproducing, it can infect those new, healthy cells. If the virus is eradicated, the new cells can remain and begin improving your liver function. Even if you don't clear, at 4/4, you should be able to get ahead of the damage to some degree and improve your liver function. Then if you have the stamina to go the distance and you DO clear, your liver will actually begin actively breaking down the old scar tissue.
Treating for a 4/4 is a win/win situation. You can get a little better or a whole lot better.
Another thing to think about is that as the interferon kills virussed cells, it replaces them with clean new liver cells. As long as the virus is reproducing, it can infect those new, healthy cells. If the virus is eradicated, the new cells can remain and begin improving your liver function. Even if you don't clear, at 4/4, you should be able to get ahead of the damage to some degree and improve your liver function. Then if you have the stamina to go the distance and you DO clear, your liver will actually begin actively breaking down the old scar tissue.
Treating for a 4/4 is a win/win situation. You can get a little better or a whole lot better.
I wanted to clear maybe some confusion - she has given me prescriptions for both the neupogen AND the procrit yesterday but does not want me to take the interferon until I use the procrit and neupo and the #'s come up. She did not say that i could not take these meds but that i would most likely have to take for rest of tx which will make my liver have to work even harder.
Her WHOLE argument was that with a svr chance of only 1% that maybe it was not worth it for me. I told her that I was not ready to stop that I wanted to continue for at least 3 more mos. and she said fine BUT still do not take interferon until WBC comes up...So she did not say no to me just that it was going to be a whole lot of work for very little odds. I thought i was clear in my first post but...it is a lot of info to try to pass on.
Her WHOLE argument was that with a svr chance of only 1% that maybe it was not worth it for me. I told her that I was not ready to stop that I wanted to continue for at least 3 more mos. and she said fine BUT still do not take interferon until WBC comes up...So she did not say no to me just that it was going to be a whole lot of work for very little odds. I thought i was clear in my first post but...it is a lot of info to try to pass on.
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