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
I cleared in a week, which makes my situation NOT applicable to anyone else's. I would be extremely uncomfortable about anyone being dose-reduced on peg or riba who had not already cleared the virus.
I can get away with it because of my odd situation but I believe those who have not cleared are endangering their chances. Even with reduced peg, my virologist was adamant that my riba stay at full dose, since that is the drug, if reduced, that has the most influence on failure to maintain an SVR.
I can get away with it because of my odd situation but I believe those who have not cleared are endangering their chances. Even with reduced peg, my virologist was adamant that my riba stay at full dose, since that is the drug, if reduced, that has the most influence on failure to maintain an SVR.
Your nurse, if she has your best interest at heart, would at least arrange a conference call with you, herself and the doctor TODAY, so you can find out if she's plain wrong or not. She'd call it him at home if necessary.
I have a too-long story to tell about my older son's birth. In a nutshell, the doctor was beside herself when the nurse mistakenly ordered my son under the bilirubin lights while the doc was away over the weekend. The consequences were dreadful and the doc just about booted the nurse to h-ell for her incompetence. And the nurse had just got the numbers mixed up.
You're being ordered by your nurse to STOP your interferon ENTIRELY, are not UND and yet have the rescue drugs in your hot little hand with lab numbers that are very far from alarming.
Your situation is not comparable with Trish's or NewLeaf's.
I believe Trish was already UND when dose reduced AND she was ONLY dose-reduced, not stopped entirely (at least until week 34). And her profile was very different, early stage, etc.
Newleaf has stage four like you but was an extremely early responder and cleared the virus (within two weeks, Newleaf?). I know she dose-reduced the interferon but I believe she never stopped it entirely.
I simply don't fathom this nurse of yours. She strikes me as archaic or out of her depth, unless there's something she knows that we don't.
My NP may look archaic but she was cutting edge from the get-go. She said with great gravity, staring me in the eyes, "Now all we want you to do is comply with your meds and if we run into trouble, we'll give you rescue drugs to get through." I never needed rescue drugs because she also had the brains and experience to let me surf pretty low, especially with ANC's.
Without a competent, caring and knowledgeable NP and up-to-date doctor, you can find yourself in the middle of a nightmare every step of the way, instead of relatively smooth sailing.
I have to run but I wish you the very best. Your nurse seems to be running interference on you and you'll need to huddle first, in order to stay in the game.
I have a too-long story to tell about my older son's birth. In a nutshell, the doctor was beside herself when the nurse mistakenly ordered my son under the bilirubin lights while the doc was away over the weekend. The consequences were dreadful and the doc just about booted the nurse to h-ell for her incompetence. And the nurse had just got the numbers mixed up.
You're being ordered by your nurse to STOP your interferon ENTIRELY, are not UND and yet have the rescue drugs in your hot little hand with lab numbers that are very far from alarming.
Your situation is not comparable with Trish's or NewLeaf's.
I believe Trish was already UND when dose reduced AND she was ONLY dose-reduced, not stopped entirely (at least until week 34). And her profile was very different, early stage, etc.
Newleaf has stage four like you but was an extremely early responder and cleared the virus (within two weeks, Newleaf?). I know she dose-reduced the interferon but I believe she never stopped it entirely.
I simply don't fathom this nurse of yours. She strikes me as archaic or out of her depth, unless there's something she knows that we don't.
My NP may look archaic but she was cutting edge from the get-go. She said with great gravity, staring me in the eyes, "Now all we want you to do is comply with your meds and if we run into trouble, we'll give you rescue drugs to get through." I never needed rescue drugs because she also had the brains and experience to let me surf pretty low, especially with ANC's.
Without a competent, caring and knowledgeable NP and up-to-date doctor, you can find yourself in the middle of a nightmare every step of the way, instead of relatively smooth sailing.
I have to run but I wish you the very best. Your nurse seems to be running interference on you and you'll need to huddle first, in order to stay in the game.
Nurse Ratchet is right!
Tracy, I have been on reduced interferon for 5 months of 7 but I'm kind of a weird case because I cleared very early and am super-responsive to the anti-virals. I don't believe the reduced dose has done me any harm. Reduced riba is more of a problem. It's like the lighter fluid that gooses the interferon response along. Since you haven't cleared yet, any unneccesary dose reduction is a problem.
I was interested in Nurse Ratchet's comment that cirrhosis is irreversible. That has been found to be untrue. Even some national sites that don't get updated very often still say that it's not reversible but studies done by Schering Plough, the original releaser and manufacturer of interferon, have shown that it's not uncommon for cirrhotics who successfully clear the virus from their systems to regress their fibrosis as much as 2 entire stages. Of course everyone responds individually and some patients don't alter their fibrosis stage, but more do than don't. Nurse Ratchet is not up on the latest research.
Tracy, I have been on reduced interferon for 5 months of 7 but I'm kind of a weird case because I cleared very early and am super-responsive to the anti-virals. I don't believe the reduced dose has done me any harm. Reduced riba is more of a problem. It's like the lighter fluid that gooses the interferon response along. Since you haven't cleared yet, any unneccesary dose reduction is a problem.
I was interested in Nurse Ratchet's comment that cirrhosis is irreversible. That has been found to be untrue. Even some national sites that don't get updated very often still say that it's not reversible but studies done by Schering Plough, the original releaser and manufacturer of interferon, have shown that it's not uncommon for cirrhotics who successfully clear the virus from their systems to regress their fibrosis as much as 2 entire stages. Of course everyone responds individually and some patients don't alter their fibrosis stage, but more do than don't. Nurse Ratchet is not up on the latest research.
No it's just patently not true in any way shape or form.
Too bad Nurse Ratchet doesn't read studies or obviously anything new on HCV.
( I know you were talking to Jim but as a person who was not UND at week 12 but SVR for over two years the concept is something that gets my goat more than a little bit, if I had listened to bad information like that and not done my own homework in here I would have failed for CERTAIN).
Bad medicine just bad medicine.
Too bad Nurse Ratchet doesn't read studies or obviously anything new on HCV.
( I know you were talking to Jim but as a person who was not UND at week 12 but SVR for over two years the concept is something that gets my goat more than a little bit, if I had listened to bad information like that and not done my own homework in here I would have failed for CERTAIN).
Bad medicine just bad medicine.
Jim – Typically great response. What I don't understand about Tracy's account of what her nurse said to her is that it is simply wrong as far as I know:
". . . 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 don't understand where this is coming from. I just posted a study of 48 vs. 72 week treatments a few days ago. If you are genotype 1, have a two-log drop at week 12 and don't clear until week 24, you are a slow responder and your chances of SVR drop to around 35% with 48 weeks of treatment. Those aren't great odds, but they sure aren't 1%. I understand that the cirrhosis, obesity, and other issues, drop the chances further, but what the nurse is reported as saying is simply not true. (Unless there are new studies that I haven't kept up with.)
". . . 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 don't understand where this is coming from. I just posted a study of 48 vs. 72 week treatments a few days ago. If you are genotype 1, have a two-log drop at week 12 and don't clear until week 24, you are a slow responder and your chances of SVR drop to around 35% with 48 weeks of treatment. Those aren't great odds, but they sure aren't 1%. I understand that the cirrhosis, obesity, and other issues, drop the chances further, but what the nurse is reported as saying is simply not true. (Unless there are new studies that I haven't kept up with.)
Sounds like you're treating with Nurse Ratchet.
I agree with the comments that you have to see a competent liver specialist (hepatologist) right away. Not sure if her supervising GI is that person. In fact, I have doubts because if she's that they bad, how good camera supervisor be? As stated, unless there's something going on that we don't know about there is no reason to reduce or stop the Peg based on your current ANC values. Any delay at this point could kill remaining chances you have of SVR. "Trish's" example above, is not apples and apples. She was not on SOC -- she had a third trial drug -- and I don't believe she was a slow responder. She certainly didn't have cirrhosis and she wasn't obsese. point being that the fact her dose reduction didn't hurt her SVR really has little to do with your case.
All that said, the one point your nurse brings up that does deserve consideration and that is what are your real chances of SVR and does it make sense to continue on treating for you better stopping at some point, and retreating with the newer drugs, perhaps after losing some weight and treating any other issues such as insulin resistance or fatty liver should you have them. Because right now, you have three negative predictors of SVR -- cirhossis, being obese, and being detecitble at week 12. And if you don't take your next Peg injection, it gets worse.
The best scenario IMO would be for you to continue on full course meds until you see a competent hepatoloigst who can then sit down with you and discuss what's in your best interest moving forward. It may indeed be the stop, but cross that bridge when you get there. But as JP suggests, these are powerful drugs and must be taken under medical supervision. Perhaps more persistence in reaching your Dr. may be in order for permission to take the injection. I know some here would say take it anyway -- and personally I probably would -- but the risks have already been pointed out.
-- Jim
I agree with the comments that you have to see a competent liver specialist (hepatologist) right away. Not sure if her supervising GI is that person. In fact, I have doubts because if she's that they bad, how good camera supervisor be? As stated, unless there's something going on that we don't know about there is no reason to reduce or stop the Peg based on your current ANC values. Any delay at this point could kill remaining chances you have of SVR. "Trish's" example above, is not apples and apples. She was not on SOC -- she had a third trial drug -- and I don't believe she was a slow responder. She certainly didn't have cirrhosis and she wasn't obsese. point being that the fact her dose reduction didn't hurt her SVR really has little to do with your case.
All that said, the one point your nurse brings up that does deserve consideration and that is what are your real chances of SVR and does it make sense to continue on treating for you better stopping at some point, and retreating with the newer drugs, perhaps after losing some weight and treating any other issues such as insulin resistance or fatty liver should you have them. Because right now, you have three negative predictors of SVR -- cirhossis, being obese, and being detecitble at week 12. And if you don't take your next Peg injection, it gets worse.
The best scenario IMO would be for you to continue on full course meds until you see a competent hepatoloigst who can then sit down with you and discuss what's in your best interest moving forward. It may indeed be the stop, but cross that bridge when you get there. But as JP suggests, these are powerful drugs and must be taken under medical supervision. Perhaps more persistence in reaching your Dr. may be in order for permission to take the injection. I know some here would say take it anyway -- and personally I probably would -- but the risks have already been pointed out.
-- Jim
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