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New lab results, still confused
I just rec'd lab results and I am still confused. The HCV report that was taken before Istarted treatment back in Jusy read 6,400,000 IU/ml and the most recent HCV shows 11,900 HCV after 19 weeks of treatment. M Dr. says that I am not a rapid responder to the treatment but that seems like it is certainly progress. Any insight- i just need some good news, this treatment is really hard. I am very sick and sometimes don't know if I have the stength to get thorugh it. Also my WBC is 3.1 and RBC is 3.00, they mentioned I might need to go Procrit, does anyone have experience with this, does it help?
if i understood you correctly in your follow up post you said you are stage 4. This is probably the reason why you have not responded to tx that well. Being a stage 4 may warrant you continuing tx beyond 24 weeks. Studies have shown that treatment can help with the liver damage even if you don't acheive SVR. I think your are doing the right thing trying to see another doctor. You could definately use some expert advice moving forward.
Best of luck
Best of luck
Not good you didn´t got a 12week pcr.
Anyway your numbers are going the right direction no daupt about that, that is good.
If you are gonna continue you ought to do everything possible to upper your odds.
You also must be careful if you gonna add something to the mix maybe vitamin d
could be something to consider check out the thread about that.
http://www.medhelp.org/posts/Hepatitis-C/hepC-and-vitamin-D/show/1099028
I think its quite a shame people with stage 4 don´t get the best possible docs and treatment also gets informed about how importent it is to be informed and prepared before tx to give the best shot at it.
Its never too late though, keep on coming here ask questions.
There are some very knowledgeable people here how can give you tips and info to upper your odds.
Also try to get copies of all your lab reports.
ca
Anyway your numbers are going the right direction no daupt about that, that is good.
If you are gonna continue you ought to do everything possible to upper your odds.
You also must be careful if you gonna add something to the mix maybe vitamin d
could be something to consider check out the thread about that.
http://www.medhelp.org/posts/Hepatitis-C/hepC-and-vitamin-D/show/1099028
I think its quite a shame people with stage 4 don´t get the best possible docs and treatment also gets informed about how importent it is to be informed and prepared before tx to give the best shot at it.
Its never too late though, keep on coming here ask questions.
There are some very knowledgeable people here how can give you tips and info to upper your odds.
Also try to get copies of all your lab reports.
ca
Ok, thanks so much for helping me to clairfy all this. I had an appt. with a new Dr this morning but they had to call and cancel it has my primary physican was not in their network.. I am haveing touble finding a hepatologist in the Knoxville area that accepts my state insurance plan. Does anyone know of one in the area,you would think that with a university hospital here we could find something.
My HCV reports are as follows: before tx- 6,400,000
week 4- 520,000
week 14- 11,900
I am not really sure why the labs were drawn on those dates, my provider is not even an MD but a PA- he is the only one in my area that accepts the state insurance (tenncare) He treats me as I am a alcholoic drug addict, still using- which is not the case at all.
Thanks to all for the support and insight- it means so much! my wife thanks you also- she is doing all the typing!!
My HCV reports are as follows: before tx- 6,400,000
week 4- 520,000
week 14- 11,900
I am not really sure why the labs were drawn on those dates, my provider is not even an MD but a PA- he is the only one in my area that accepts the state insurance (tenncare) He treats me as I am a alcholoic drug addict, still using- which is not the case at all.
Thanks to all for the support and insight- it means so much! my wife thanks you also- she is doing all the typing!!
If you are still not UND at week 24 then certainly you should stop. Even with extension your odds of success are very very very low (I thnk like 2 or 3%). If you ARE UND at week 24 then extending to week 72 is what is called for at minimum to give you a good chance.
Personally I was 411 at week 4 then 419 at week 12 so I had to extend to 72 (I was clear at week 24). I have been cured for almost three years and am sure ifI did not extend probably would have relapsed.
I did have a two log drop at week 12 and was clear at week 24. Those are the things you need to know. Firstly find out if you were at a two log drop at week 12 (take a zero off the end for each log ie: 100,000 would need to be 1,000) and second get to UND at week 24.
Otherwise yes...some doctors do make their patients stay on tx for a long long time but without a good result.
We are all hoping that you clear quickly. Any chance of adding some extra meds to the mix to help you get there?
Personally I was 411 at week 4 then 419 at week 12 so I had to extend to 72 (I was clear at week 24). I have been cured for almost three years and am sure ifI did not extend probably would have relapsed.
I did have a two log drop at week 12 and was clear at week 24. Those are the things you need to know. Firstly find out if you were at a two log drop at week 12 (take a zero off the end for each log ie: 100,000 would need to be 1,000) and second get to UND at week 24.
Otherwise yes...some doctors do make their patients stay on tx for a long long time but without a good result.
We are all hoping that you clear quickly. Any chance of adding some extra meds to the mix to help you get there?
I am geno 1, stage 3-4, and I just finished tx in Sept. My starting VL was about 750,000, and I did get a 2-log drop by week 12 (VL = 1180). But I did not get to und until week 28.
The standard for extending tx is to 72 weeks, but I chose to add 60 weeks to when I became und - so I did full tx for a total of 88 weeks, and then 4 extra weeks of gradual tapering of the interferon only. My choice to add 60 weeks was based on a study conducted in Japan, here is a link to the abstract: http://tinyurl.com/5efhmy
I am not a doctor, but here is my opinion.
First and most importantly, you need find a liver specialist (hepatologist) that you feel comfortable with. Most "regular" doctors and gastroenterologists don't keep up with the latest info on treating Hep C, and you need to be seeing someone who is up to date.
Like comeagain said above, I think you need to confirm whether you achieved a 2-log drop by week 12 (your viral load should have been 64,000 or less). If you did not get that 2-log drop, you might consider stopping tx and trying to get into a clinical trial for one of the new drugs a.s.a.p.
If you did get a 2-log drop by week 12, continue tx and see if your VL continues to decline. Because you are stage 4, I don't think you should automatically stop at week 24 if you aren't und. You and your hepatologist can decide when and if to continue or stop tx.
Regarding Procrit, it was a huge help for me. I had to take a 20,000 unit shot once a week for almost a year. I think the need for Procrit is a good sign, because it indicates that the ribavirin is doing its job.
I hope you find a good hepatologist soon, you need one right away. And, you can get through tx - yes it is hard, but the alternative is much worse. Just take it one day at a time.
We are all rooting for you!
smaug
The standard for extending tx is to 72 weeks, but I chose to add 60 weeks to when I became und - so I did full tx for a total of 88 weeks, and then 4 extra weeks of gradual tapering of the interferon only. My choice to add 60 weeks was based on a study conducted in Japan, here is a link to the abstract: http://tinyurl.com/5efhmy
I am not a doctor, but here is my opinion.
First and most importantly, you need find a liver specialist (hepatologist) that you feel comfortable with. Most "regular" doctors and gastroenterologists don't keep up with the latest info on treating Hep C, and you need to be seeing someone who is up to date.
Like comeagain said above, I think you need to confirm whether you achieved a 2-log drop by week 12 (your viral load should have been 64,000 or less). If you did not get that 2-log drop, you might consider stopping tx and trying to get into a clinical trial for one of the new drugs a.s.a.p.
If you did get a 2-log drop by week 12, continue tx and see if your VL continues to decline. Because you are stage 4, I don't think you should automatically stop at week 24 if you aren't und. You and your hepatologist can decide when and if to continue or stop tx.
Regarding Procrit, it was a huge help for me. I had to take a 20,000 unit shot once a week for almost a year. I think the need for Procrit is a good sign, because it indicates that the ribavirin is doing its job.
I hope you find a good hepatologist soon, you need one right away. And, you can get through tx - yes it is hard, but the alternative is much worse. Just take it one day at a time.
We are all rooting for you!
smaug
No doubt this treatment is most difficult -- my husband has had a tough time too, with rbc down to 2.3 at week 24, and has been on procrit pretty much since. At the point he was given procrit, it was not soon enough -- procrit takes a while to kick in (2 weeks for some people, 4+ weeks for others) and he ended up needing blood transfusion, but since then it has helped keep his rbcs in the 3+ range again. My husband's not crazy about having to do more shots - he's doing procrit 2x/week -- but as he says, it's better than having to sit through transfusions, and it's a he11 of a lot better than feeling barely alive.
Has your doctor discussed with you any kind of timeline? As copyman states, the 24 week test is a very important marker -- my husband is on week 54 of 72 with procrit 2x/week because he was undetected by week 24. If you are struggling with treatment, it's an important discussion to have with your doc about how long he's continuing you on the meds and the reasons behind your individual treatment plan.
Best wishes. ~eureka
Has your doctor discussed with you any kind of timeline? As copyman states, the 24 week test is a very important marker -- my husband is on week 54 of 72 with procrit 2x/week because he was undetected by week 24. If you are struggling with treatment, it's an important discussion to have with your doc about how long he's continuing you on the meds and the reasons behind your individual treatment plan.
Best wishes. ~eureka
Actually I went back through my records, my last HCV test was at 16 weeks of tx. The Dr only stated that I was not a rapid responder, the other comment was my thought- "it certainly seems like progress".
I am not happy with my current physician and I have appt. tomorrow for a 2nd opinion so hopefully this Dr will be more knowledgeable and be able to answer my questions.
I am in stage 4 Genotype 1
I am not happy with my current physician and I have appt. tomorrow for a 2nd opinion so hopefully this Dr will be more knowledgeable and be able to answer my questions.
I am in stage 4 Genotype 1
If you had more than 64000 iu/ml at week 12 you didn´t had a two log drop and thats the limit for continuing treatment I believe.
6400 is a three log drop for you so you had more than 2 at week 19.
Do you know what you had week 12??
I was a geno 3 I hope other g1 are gonna chime in on this one, they no more than I
on this subject.
Always check with a doc though no matter how knowledgeable people here might seem!!
6400 is a three log drop for you so you had more than 2 at week 19.
Do you know what you had week 12??
I was a geno 3 I hope other g1 are gonna chime in on this one, they no more than I
on this subject.
Always check with a doc though no matter how knowledgeable people here might seem!!
I copy everything what copyman just said .
"M Dr. says that I am not a rapid responder to the treatment but that seems like it is certainly progress."
Very odd comment IMO.
Are your doc a hepatologist we have heard other storys about docs keeping their patiens on drugs for ages when they really should have stopped very early.
Get a second opinion preferably with a hepatologist .
I think most docs would have put you of treatment after your week 12 result unless not extraordinary circumstances are at hand.
What stage of fibroses are you ??
Best of luck !!
ca
"M Dr. says that I am not a rapid responder to the treatment but that seems like it is certainly progress."
Very odd comment IMO.
Are your doc a hepatologist we have heard other storys about docs keeping their patiens on drugs for ages when they really should have stopped very early.
Get a second opinion preferably with a hepatologist .
I think most docs would have put you of treatment after your week 12 result unless not extraordinary circumstances are at hand.
What stage of fibroses are you ??
Best of luck !!
ca
So sorry you are having a hard time with treatment. I hate to tell you but it is not good that your virus is still detectable at 19 week. To have a decent chance your should be undetectable by 12 weeks at the latest. You should consider either stopping and wait for the new drugs if minimal liver damage or extending treatment to 72 weeks if you are undetectable by 24 weeks. You have to stop at 24 weeks if virus is still present.
Hoping you feel better soon.
Hoping you feel better soon.
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