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
Thankyou so much - I passed out about 2:00 and just woke up as i had a VERY sleepless in seattle night!!! Okay so last update - I think provided the referral goes well i MAY be able to be seen at hepa office at univ of wa withing a couple of weeks. Also pharmacy called me back. I dropped of script yesterday and insurance approved at 100% (of course with this disease i am at my out of pocket $ max) - so that is great news. I will be using the Neupogen tomorrow and the procrit will not be available until monday. Not really so worried about the procrit because as I said those numbers were on the rise. I have been scared to take my interferon but because I have a lab form for a CBC on June 1 so I will more than likely go ahead and do the shot.
Again thank you all so much you have been clear,concise and so helpful I am touched. My NP said that my liver would not regenerate that at 4/4 there is still more liver that is not working than is and that that would never change. I thought the liver could regenerate. I guess not but If i continue to have the virus then whats left of my healthy liver will be screwed - as I said i went from stage 3 fibrosis w/borderline cirr. to 4/4 in 5 years! Girl power - thanks so much
Again thank you all so much you have been clear,concise and so helpful I am touched. My NP said that my liver would not regenerate that at 4/4 there is still more liver that is not working than is and that that would never change. I thought the liver could regenerate. I guess not but If i continue to have the virus then whats left of my healthy liver will be screwed - as I said i went from stage 3 fibrosis w/borderline cirr. to 4/4 in 5 years! Girl power - thanks so much
Sorry you are having to deal with all this. You have gotten some great advice, so I am not gonna add to that, but I did want to chime in on doctor/patient relationships.
I am in a trial at the Mayo clinic. I have always had a back up hepatologist on standby in the event that I was dropped from the trial. I was up front from the beginning that I wanted to do this once and they knew I was going to be where I was getting the most agressive care. I am (mostly) always respectful in making my needs clear. To date, I haven't had any ill will from either office. So, it can be done...don't wory about doc politics. Kicking this virus is most important right now. I figure there'll be plenty of time to apologize later if needed, lol!
Hang in there. Please keep us posted.
Isobella
I am in a trial at the Mayo clinic. I have always had a back up hepatologist on standby in the event that I was dropped from the trial. I was up front from the beginning that I wanted to do this once and they knew I was going to be where I was getting the most agressive care. I am (mostly) always respectful in making my needs clear. To date, I haven't had any ill will from either office. So, it can be done...don't wory about doc politics. Kicking this virus is most important right now. I figure there'll be plenty of time to apologize later if needed, lol!
Hang in there. Please keep us posted.
Isobella
Neulasta costs $3-4000, drives up neuts within hours and the effect lasts at least 3 weeks and requires insurance approval.
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I had a strange thing happen with the neulasta and the neupogen. I was started on neulasta because it is long acting. However, I never responded to that. After 6 weeks of neuts at zero, my hematologist said no more. I asked her to try neupogen and she wouldn't. I fired her and hired her partner. He agreed that the neupogen was worth a try. It started getting my counts up the first week. Of course, I took it every day. So neulasta does not work for everyone and not in the first few hours. My bone marrow was so depleted that my bone marrow biopsy showed almost no stem cells. It was very scary.
The thing that turns the neulasta off is when the counts begin to rise. It will supposedly work until that happens so 3 weeks is just an approximation.
Like you, I had a bad infection. It was in my sinuses. Hep patients don't usually get infections from low neutrophil counts unless those counts get below 150 or so.
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I had a strange thing happen with the neulasta and the neupogen. I was started on neulasta because it is long acting. However, I never responded to that. After 6 weeks of neuts at zero, my hematologist said no more. I asked her to try neupogen and she wouldn't. I fired her and hired her partner. He agreed that the neupogen was worth a try. It started getting my counts up the first week. Of course, I took it every day. So neulasta does not work for everyone and not in the first few hours. My bone marrow was so depleted that my bone marrow biopsy showed almost no stem cells. It was very scary.
The thing that turns the neulasta off is when the counts begin to rise. It will supposedly work until that happens so 3 weeks is just an approximation.
Like you, I had a bad infection. It was in my sinuses. Hep patients don't usually get infections from low neutrophil counts unless those counts get below 150 or so.
If you are in Kenmore get into the U.W medical center.
If you get on their web site it will give you a list of all the hepatolgist their back grounds and specialties.
Dr Carthers (maybe not spelled right) is the head of Dept if you can get into see him that would be good.
I agree with all info above. I am on all rescue drugs and was never taken off tx.
Think you may need a different Doc.
Best of Luck
Hopeful51
If you get on their web site it will give you a list of all the hepatolgist their back grounds and specialties.
Dr Carthers (maybe not spelled right) is the head of Dept if you can get into see him that would be good.
I agree with all info above. I am on all rescue drugs and was never taken off tx.
Think you may need a different Doc.
Best of Luck
Hopeful51
Some positives from your comments - that you will be seeing the GI on Monday, that you're working on getting a 2nd opinion while waiting to see the GI.
Also, didn't realize or pick up that your NP had already given you scripts for procrit AND neupogen. I hope you get these in your hands soon. If your GI and NP insist on forcing a dosage reduction, then you want to be on the neupogen to bring up your ANC. Also so that you can bring it up to prevent your ANC from tanking further in light of comments from Jenny Penny.
Procrit will take awhile to kick in and as long as you're watching your hemoglobin levels so that you don't go above the cutoff point, I don't see the issue.
Good work on getting an appt with the GI on Monday already.
What I don't understand is why the NP pulled your interferon entirely rather than dose reduce that if she was concerned. Seems extreme to completely remove it. Your call on if you take a partial injection, no injection or full one. I know what I'd do regarding my dosages in the meantime, however we all make our own calls on that and you have the right to make yours. You've been presented with plenty of opinions! It's always a very hard call to determine what we feel is right for us especially when strong voices pull at us and our potential outcome weighs on our shoulders. Just know that we're all pulling for you and hoping this goes well for you.
As newleaf said, hang in there and keep in touch.
Trish
Also, didn't realize or pick up that your NP had already given you scripts for procrit AND neupogen. I hope you get these in your hands soon. If your GI and NP insist on forcing a dosage reduction, then you want to be on the neupogen to bring up your ANC. Also so that you can bring it up to prevent your ANC from tanking further in light of comments from Jenny Penny.
Procrit will take awhile to kick in and as long as you're watching your hemoglobin levels so that you don't go above the cutoff point, I don't see the issue.
Good work on getting an appt with the GI on Monday already.
What I don't understand is why the NP pulled your interferon entirely rather than dose reduce that if she was concerned. Seems extreme to completely remove it. Your call on if you take a partial injection, no injection or full one. I know what I'd do regarding my dosages in the meantime, however we all make our own calls on that and you have the right to make yours. You've been presented with plenty of opinions! It's always a very hard call to determine what we feel is right for us especially when strong voices pull at us and our potential outcome weighs on our shoulders. Just know that we're all pulling for you and hoping this goes well for you.
As newleaf said, hang in there and keep in touch.
Trish
No kidding, you guys have just blown me away, there is so much information on this thread. It is wonderful to see you all jump in to support Tracy, and I have learned a lot in following along.
Tracy, I'm not nearly so knowledgeable about all these issues, but did want to say that I, too, will be rooting for you to push through this and to be successful in your treatment. That is one of our common bonds here, we all want that for ourselves and for others. Just wanting to send warm wishes your way.
Lapis
Tracy, I'm not nearly so knowledgeable about all these issues, but did want to say that I, too, will be rooting for you to push through this and to be successful in your treatment. That is one of our common bonds here, we all want that for ourselves and for others. Just wanting to send warm wishes your way.
Lapis
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