Aa
Got 4 wk. Test back, HELP GOOD or not ?
My nurse called me this morning to tell me my 4 week results. She kinda tells me like BLAH, BLAH, BLAH, and when I ask questions I feel that it's not all to informative for me, and that she cuts things short because she has a million other calls to make. SO I am once again counting on you knowledgeble heppers to help me to understand my results, here goes, I started out with a viral load of 6 milliom 8 hundred and 50 thousand, alt 113 and my ast 105. My results at 4 weeks is as follows Viral load now down to 3 hundred and 1 thousand , my alt now at 108 and my ast now at 100. Question is my diet and being 15 lbs. over weight a factor of my results on my alt @ ast ? and my progress of my viral load going down, is that good ? I am a Geno type 1A , 48 year young white woman, Biopsy came back before I started tx. Mild inflammation very mild scarring . The doctor was happy with my biopsey results. Please give me all of your input for we all need our cheering section on this forum.
Thanks sooo much again guys,
:) HappyDeb
Thanks sooo much again guys,
:) HappyDeb
I had such an overwelming feeling when I read all of your responses. ZAZZA AND JMJM530 you both just gave me such hope and some of the knowledge that I needed to know. I don't even know what stage I am at , I have to find out or even my grade either. Katerika, I always love hearing from you.You all are like a ray of sunshine. I will call up my doctor and try to talk to him.
Thanks to all, AND IF ANYONE HAS ANYMORE ON THIS SUJECT, BRING IT ON !!!!!!!!!!!!!!!!!!!!!
:) Debbie
Thanks to all, AND IF ANYONE HAS ANYMORE ON THIS SUJECT, BRING IT ON !!!!!!!!!!!!!!!!!!!!!
:) Debbie
I am geno 1. Stage 3-4/4 grade2/3. Portal fibrosis, bridging , blah blah, blah! I am now on 9th week of tx. At 4 weeks, I didn't achieve the log drop and they said I was a slow responder. You are making progress, keep up the good thoughts. At 8 weeks I made it to a 2 log drop. Keep on the positive side, we are responding!
I really don't have any options here because of the extent of my liver damage, In some ways that is good. It's a no-brainer and I am so good at these no- brainer decisions.
I really don't have any options here because of the extent of my liver damage, In some ways that is good. It's a no-brainer and I am so good at these no- brainer decisions.
What I didn't emphasize enough in my previous post is that you are responding. Doctors like to see at least a one-log drop at week 4, and you have achieved that, so you do have reason for optimisim.
My two other main points were that there may be something you can do to make sure you reach non-detectible by week 12 -- such as increasing the riba -- and that should be worked out with your doctor, preferably with a face-to-face meeting, rather than a hurried phone call with the NP.
And lastly, in the event you become a slow responder (still detectible by week 12), you will then have some decisions to make as to whether continuing on with treatment is in your best interests given the fact you have little liver damage. Options then would be to continue treating for 72-weeks (assuming you are non-detectible by week 24) or cutting your losses at week 12, then gathering strength to fight another day, with hopefully better meds. Both options have merit and strong advocates, although my personal opinion is that extending treatment beyond 48 weeks makes the most sense only for those with significant liver damage, since they have less time to wait for newer treatments.
All the best,
-- Jim
My two other main points were that there may be something you can do to make sure you reach non-detectible by week 12 -- such as increasing the riba -- and that should be worked out with your doctor, preferably with a face-to-face meeting, rather than a hurried phone call with the NP.
And lastly, in the event you become a slow responder (still detectible by week 12), you will then have some decisions to make as to whether continuing on with treatment is in your best interests given the fact you have little liver damage. Options then would be to continue treating for 72-weeks (assuming you are non-detectible by week 24) or cutting your losses at week 12, then gathering strength to fight another day, with hopefully better meds. Both options have merit and strong advocates, although my personal opinion is that extending treatment beyond 48 weeks makes the most sense only for those with significant liver damage, since they have less time to wait for newer treatments.
All the best,
-- Jim
Let's get realistic here. People with genotype 1 are finally getting 4 week viral loads done. This is good. All the information we get can help us make decisions and take actions along the road.
We all hope for an RVR (rapid viral response), but the truth is that only about 20% of geno 1 become RVR's (and many of them had a low baseline viral load, below 400'000 IU/ml, before treatment). This does not mean that the remaining 80% of genotype 1 should give up at this point. This is just a mark on the way to the 12 week post.
Another 40% become EVR (early viral response), ie UND by week 12, and they look at a 70 - 80% SVR rate. This is still looking good.
Then we have the slow responders, 20% of geno 1, and the non-responders, another 20% of geno 1.
The slow responders are those that have at least a 2 log drop at week 12, and then become UND by week 24. These patients are now often recommended to look at the option of extending tx to 72 weeks, and thereby reducing their risk of relapse. This option is especially interesting for those with a low viral load at week 12, preferably below 6000 IU/ml, but some hepatologists mention a number of below 30'000 IU/ml.
For the non-responders, those that do not have a 2 log drop at week 12 or are not UND by week 24, there is today no approved treatment option. Well, there is the trials for protease inhibitors and such of course, but no SOC.
So, HappyDeb, I think you are looking at either early viral response or slow viral response. This means you are still in the game, and you got good company by many of us other geno 1's. I think you are doing well to be proactive and obtain knowledge about hepatitis C, and the actions suggested above by Jim seem appropriate to me: discuss with your doctor the possibility of upping your ribavirin dose, and see if you can get a week 8 viral load test.
If you are interested in my stats, you are welcome to look at my profile. Just click on my screen name.
Best of luck to you and continue the good work,
Zazza
We all hope for an RVR (rapid viral response), but the truth is that only about 20% of geno 1 become RVR's (and many of them had a low baseline viral load, below 400'000 IU/ml, before treatment). This does not mean that the remaining 80% of genotype 1 should give up at this point. This is just a mark on the way to the 12 week post.
Another 40% become EVR (early viral response), ie UND by week 12, and they look at a 70 - 80% SVR rate. This is still looking good.
Then we have the slow responders, 20% of geno 1, and the non-responders, another 20% of geno 1.
The slow responders are those that have at least a 2 log drop at week 12, and then become UND by week 24. These patients are now often recommended to look at the option of extending tx to 72 weeks, and thereby reducing their risk of relapse. This option is especially interesting for those with a low viral load at week 12, preferably below 6000 IU/ml, but some hepatologists mention a number of below 30'000 IU/ml.
For the non-responders, those that do not have a 2 log drop at week 12 or are not UND by week 24, there is today no approved treatment option. Well, there is the trials for protease inhibitors and such of course, but no SOC.
So, HappyDeb, I think you are looking at either early viral response or slow viral response. This means you are still in the game, and you got good company by many of us other geno 1's. I think you are doing well to be proactive and obtain knowledge about hepatitis C, and the actions suggested above by Jim seem appropriate to me: discuss with your doctor the possibility of upping your ribavirin dose, and see if you can get a week 8 viral load test.
If you are interested in my stats, you are welcome to look at my profile. Just click on my screen name.
Best of luck to you and continue the good work,
Zazza
Is your dr as busy as the nurse? I know that feeling of being rushed off the phone when I still have more questions to ask. I don't know what dosage you are taking for yourtx, but I'm sure (I hope) you are being weight dosed appropriately. A friend who is txing was slow responding and nearly everyone thought her dr wasn't txing her with enough riba for her size. She asked him to increase the dosage and now just eaiting to see if it has helped.
Good luck to you, 15 lbs is nothing to worry about. I like you're name!
Happybug:)
Good luck to you, 15 lbs is nothing to worry about. I like you're name!
Happybug:)
"UND" is defined by the test sensitivity and usually ranges from ,<50 IU/ml to around 5 IU/ml. In other words, if the test sensitivity is 50 IU/ml, being undectible by that test would tell you that you have less than 50 IU/ml, but not how much less.
The general principal is that the sooner you get to UND, the better your chances of achieving SVR. UND by 4 weeks makes you an RVR (rapid viral responder). UND by twelve weeks makes you an EVR (early viral responder).
Some studies suggest that if you aren't UND by week 12 (but UND by week 24), then you should extend tx to 72-weeks for a significantly better chance of SVR. (Another study suggests shorter treatment than 48 weeks in selected cases where you're UND by week 4). I believe the extended tx studies (at least the Berg study) used fixed-dose ribavirin (800 mg for all) , so that must be taken into consideration since you're probably on a weight-based dose of ribavirin.
From a clinical point of view, that means that one very important goal of treatment is to get UND as soon as possible. Some factors are out of our control -- genotype, genetics, sex, age, race, level of fibrosis, etc -- but some factors are in our control -- such as our specific treatment regimen and to some extent compliance with that regimen.
While the first VL test at 12 weeks used to be the standard, more and more doctors are testing earlier such as in your case at week 4. Some doctors even test VL more frequently such as on a weekly basis until the patient becomes non-detectible.
The reason for more frequent testing is not just to pinpoint the week the patient becomes non-detectible, but to give the doctor an opportunity to tweak treatment if the viral response isn't fast enough.
One important question you seem to be asking is "is there anything more I can do to help myself'?
My suggestion is to request a meeting with your doctor to review your week 4 results face-to-face. One thing you might ask your doctor is if increasing your ribavirin dose might help you get to non-detectible sooner. How much anemia you have -- or don't -- may enter into this equation. Some people seem more riba resistant than others ,meaning their hemoglobin doesn't drop as much. In these cases, sometimes the doctor will increase the ribavirin. Another thing to ask the doctor is for more frequent viral load tests -- at least week 8 and 12, but ideally every one or two weeks. These tests should have a sensitivity of at least 50 IU/ml, or ideally down to 5 IU/ml.
Hopefully, you will become non-detectible within the 12 week time frame and be able to stay on a 48-week course. If for some reason you are still detectible at week 12, then you and your doctor should review the studies/odds of SVR with and without extended treatment and come to some sort of decision moving forward. Since you appear to have little or no liver damage, you should also weigh the advantages of extended treatment -- higher chance of SVR -- against the risks of exposing yourself to the treatment drugs for an extended period of time.
These issues, and the underlying studies can get very complex, and having a good liver specialist (hepatologist) to guide you is very important. If you have confidence in your doctor, try and benefit as much from his experience as possible while at the same time doing as much independent research as you have the time and inclination for. On the other hand, if you don't have confidence in your medical team, you should consider getting outside opinions.
Yes, "Knowledge is Power" and reading threads here, including the archives, can be very helpful, but remember there are no doctors here.
Here are a few more sites you might want to look into but keep in mind that many of the articles and studies were meant for professionals, so reading is not always easy, but eventually things start to make sense, at least some of the time :) Also, some sites require free registration, but it's quite worth the little time in doing so.
All the best with your treatment and the power your knowledge will bring.
-- Jim
Some sites:
http://www.clinicalcareoptions.com/Hepatitis.aspx
http://www.projectsinknowledge.com/Init/G/1710/index.cfm
http://www.hivandhepatitis.com/hep_c.html
http://www.hcvadvocate.org/
###
The general principal is that the sooner you get to UND, the better your chances of achieving SVR. UND by 4 weeks makes you an RVR (rapid viral responder). UND by twelve weeks makes you an EVR (early viral responder).
Some studies suggest that if you aren't UND by week 12 (but UND by week 24), then you should extend tx to 72-weeks for a significantly better chance of SVR. (Another study suggests shorter treatment than 48 weeks in selected cases where you're UND by week 4). I believe the extended tx studies (at least the Berg study) used fixed-dose ribavirin (800 mg for all) , so that must be taken into consideration since you're probably on a weight-based dose of ribavirin.
From a clinical point of view, that means that one very important goal of treatment is to get UND as soon as possible. Some factors are out of our control -- genotype, genetics, sex, age, race, level of fibrosis, etc -- but some factors are in our control -- such as our specific treatment regimen and to some extent compliance with that regimen.
While the first VL test at 12 weeks used to be the standard, more and more doctors are testing earlier such as in your case at week 4. Some doctors even test VL more frequently such as on a weekly basis until the patient becomes non-detectible.
The reason for more frequent testing is not just to pinpoint the week the patient becomes non-detectible, but to give the doctor an opportunity to tweak treatment if the viral response isn't fast enough.
One important question you seem to be asking is "is there anything more I can do to help myself'?
My suggestion is to request a meeting with your doctor to review your week 4 results face-to-face. One thing you might ask your doctor is if increasing your ribavirin dose might help you get to non-detectible sooner. How much anemia you have -- or don't -- may enter into this equation. Some people seem more riba resistant than others ,meaning their hemoglobin doesn't drop as much. In these cases, sometimes the doctor will increase the ribavirin. Another thing to ask the doctor is for more frequent viral load tests -- at least week 8 and 12, but ideally every one or two weeks. These tests should have a sensitivity of at least 50 IU/ml, or ideally down to 5 IU/ml.
Hopefully, you will become non-detectible within the 12 week time frame and be able to stay on a 48-week course. If for some reason you are still detectible at week 12, then you and your doctor should review the studies/odds of SVR with and without extended treatment and come to some sort of decision moving forward. Since you appear to have little or no liver damage, you should also weigh the advantages of extended treatment -- higher chance of SVR -- against the risks of exposing yourself to the treatment drugs for an extended period of time.
These issues, and the underlying studies can get very complex, and having a good liver specialist (hepatologist) to guide you is very important. If you have confidence in your doctor, try and benefit as much from his experience as possible while at the same time doing as much independent research as you have the time and inclination for. On the other hand, if you don't have confidence in your medical team, you should consider getting outside opinions.
Yes, "Knowledge is Power" and reading threads here, including the archives, can be very helpful, but remember there are no doctors here.
Here are a few more sites you might want to look into but keep in mind that many of the articles and studies were meant for professionals, so reading is not always easy, but eventually things start to make sense, at least some of the time :) Also, some sites require free registration, but it's quite worth the little time in doing so.
All the best with your treatment and the power your knowledge will bring.
-- Jim
Some sites:
http://www.clinicalcareoptions.com/Hepatitis.aspx
http://www.projectsinknowledge.com/Init/G/1710/index.cfm
http://www.hivandhepatitis.com/hep_c.html
http://www.hcvadvocate.org/
###
I just came from visiting my 35 year old friend who is in her final days of hep c and cirrohis. She couldn't stop drinking. The nurses said she has a couple of days. As far as I know she hasn't ever taken treatments of any kind, and she was drinking up until 3 months ago. She is yellow, her eyes and her skin. Her arms and her upper body are black, although she is a white woman.She is out of it, she doesn't know me or anyone I don't think. The left side of her stomach is extremely swollen and hard, like she is nine months pregnant. It is so difficult to look at her. I do not know if she is in pain, I cannot imagine the absence of pain with her belly so swollen. She hasn't eaten in 2 days. She hasn't had any pain medication in 2 days either. She is in a nursing home basically knocking on deaths door. My heart is just breaking...
those of you who are in the early stages of these diseases please do all you can, follow your caregivers directions and know that I am praying for all of you.
This post is written in loving memory of Ginger B. Oklahoma USA
those of you who are in the early stages of these diseases please do all you can, follow your caregivers directions and know that I am praying for all of you.
This post is written in loving memory of Ginger B. Oklahoma USA
I just read all of this stuff about it's harder for geno 1a and if your not UND by four weeks your a slow or no responder. My thoughts are , well how much of a viral load do you need , is it under 3 mil. and should you only be a geno 2 ,3 to get the results. I just want to feel like I do have a chance , like everyone here does, but I don't understand if I fit into any catagory of being cured. I really don't know the standards. Thank you for your responses so far.
debnevada, I am going to be going for an 8 week blood work up. You have made me feel much better with your response. I thank you. I just need to know if there is anything more that I can do to help myself ? This virus stinks !!!!!!!!!!!! Just had to let go of some emotion, O.K. I feel better :) . If anyone else reads this , please give me your view too, remember " KNOWLEDGE IS POWER "
debnevada, I am going to be going for an 8 week blood work up. You have made me feel much better with your response. I thank you. I just need to know if there is anything more that I can do to help myself ? This virus stinks !!!!!!!!!!!! Just had to let go of some emotion, O.K. I feel better :) . If anyone else reads this , please give me your view too, remember " KNOWLEDGE IS POWER "
Don't blame your weight....i am more than that overweight and have responded really well. You
are
responding!!!!
Deb
are
responding!!!!
Deb
You're definitely responding. The old standards used to be that a 2 log drop by the 12th week would give a geno 1 less than a 50% chance at SVR. You will almost definitely achieve that. If you are UND at or before that 12 week date, you have a way better chance at clearing. If I were you i'd ask for an 8 week PCR. both for peace of mind and to make treatment decisions. If you continue to respond, but very slowly, you might even consider extending beyond 48 weeks. Be well.
How long have you been on tx. and what are your statistics ? like geno type start viral load etc.......
It is really important to me to know this so I can get a grasp on understanding the response and getting rid of this virus.Getting alittle concerned now. O.K. , freaking out just a tad. Dosn't sound like a Happy Deb to me now HA< HA
Thank you , sincerely :) Debbie
It is really important to me to know this so I can get a grasp on understanding the response and getting rid of this virus.Getting alittle concerned now. O.K. , freaking out just a tad. Dosn't sound like a Happy Deb to me now HA< HA
Thank you , sincerely :) Debbie
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