Aa
Results from doctor appointment
Ok so I just left the docs I got copy's of all the bloodwork I have had done so far! My doc said everything's good he's very pleased that I'm having hardly any side effects. I know my viral load didn't go down much less than a one log drop for the 4 week VL. These labs are very confusing to me for one I was told my starting VL was 14500 and this is what I see on the labs:
START OF TREATMENT LAB... Hepatitis c quantitation: 41.44 IU/ml...HCV log10: 4.617 log10 IU/ml
4 WEEK LABS: hepatitis c quantitation: 20,060 IU/ml.. Hcv log10: 4.302 log10 IU/ml
That's what I'm seeing and I have no clue where they get 14500 and the 20,060 is confusing me quite a bit also! I go on Wednesday to get my 8 week blood work done I told my doctor how important all of this is to me and how last time I had no clue what my results were for the 4 weeks until today and he said he will be sure to call me as soon as the 8 week labs are in:) hopefully I can get some feedback as to what these labs read! Times going by pretty quickly soon enough ill be at week 12 and my doc told me that's when we figure out how long you will treat!!
START OF TREATMENT LAB... Hepatitis c quantitation: 41.44 IU/ml...HCV log10: 4.617 log10 IU/ml
4 WEEK LABS: hepatitis c quantitation: 20,060 IU/ml.. Hcv log10: 4.302 log10 IU/ml
That's what I'm seeing and I have no clue where they get 14500 and the 20,060 is confusing me quite a bit also! I go on Wednesday to get my 8 week blood work done I told my doctor how important all of this is to me and how last time I had no clue what my results were for the 4 weeks until today and he said he will be sure to call me as soon as the 8 week labs are in:) hopefully I can get some feedback as to what these labs read! Times going by pretty quickly soon enough ill be at week 12 and my doc told me that's when we figure out how long you will treat!!
I have so much compassion for you since as I said in another post I was in a similar boat the first time I treated. I did not catch on until week 12 though. In my case no amount of expert opinion, studies or doctor assurances ever helped me not wonder if the extra dose of Riba would have made a difference. I would not wish that on anyone. That is in part why I feel many of us are picky about dose and having VL on the exact right dates. I was on 800 and I needed 1000 but I also gained while treating so who knows. I was on weight based Peg (Alfa Ifn 2b) however.
Here are some charts:
Anyway, here is this
http://www.hepatitis.va.gov/provider/guidelines/quicknotes-ribavirin-chart.asp
You have to scroll down for this chart
http://www.druginformation.com/RxDrugs/R/Ribavirin%20Capsule,%20Tablet,%20Oral%20Suspension,%20Inhalation%20Solution.html
(75 kg = 165 lbs)
Here are some charts:
Anyway, here is this
http://www.hepatitis.va.gov/provider/guidelines/quicknotes-ribavirin-chart.asp
You have to scroll down for this chart
http://www.druginformation.com/RxDrugs/R/Ribavirin%20Capsule,%20Tablet,%20Oral%20Suspension,%20Inhalation%20Solution.html
(75 kg = 165 lbs)
Hang in there Jackelyn! Wait for your 8 wk VL and ser where it is. I know its difficult... I have been biting my nails for months now. It has nothing to do with you its just your bodies response to tx. Try to relax somehow or someway. This has always been a waiting game and still is.
In the meantime be good to yourself
Jules
In the meantime be good to yourself
Jules
Hi jackelyn, I am really sorry things are going like they are for you. Yes you should be on a higher dose of Riba but to be honest with the 4 week results you had I would have to lay the blame on your response more on the interferon........... If it was me I would tell my doctor that if at week 8 your response is better and worth going on then by all means you want to up the dose to give you the best chance possible...
But if things stay the same or your still detected at week 12 and stop treatment then no you wouldn't be able to just start over with these current meds....... But all would not be loss as there is all oral (interferon free) trials that are going on and things look really good with them... You just might have to wait a couple of years...... Time seems to be on your side so everything will work out..... For now lets see what week 8 results bring...
But if things stay the same or your still detected at week 12 and stop treatment then no you wouldn't be able to just start over with these current meds....... But all would not be loss as there is all oral (interferon free) trials that are going on and things look really good with them... You just might have to wait a couple of years...... Time seems to be on your side so everything will work out..... For now lets see what week 8 results bring...
I've always felt that I am under dosed in the RIBA as well I mentioned it to my doctor but he said that's what I'm suppose to be on and i just let it be cause I didn't have enough courage to Speak up. I'm a very nervous person not very good at talking to people. I want to say something cause my weight is 180 right now and has been and I know that 1000mg is not the dose for that weight. Do you think I should say something tomorrow or should I wait for my 8 week results first? Then bring it up if I get pretty much the same results? What happens next if I'm detected at week 12 will I be able to do the same treatment? Like do you start over? I just don't have a good feeling about all this anymore.
Excellent, Can-do. I figured you would come along and know how to read those numbers correctly. (Jules, it was driving me nuts too.)
I also agree that it is week 8 that determines length of Tx. In addition, I have been concerned about your lower Ribavirin dose since you first posted it in March, that you were on 1000 mg instead of 1200 mg a day, which was clearly too low of a dose based on the recommendations.
If it was me, I would switch doctors. I would try to find a Hepatologist even if you have to drive further. I switched from a plain GI to a Hepatologist mid treatment because my GI kept screwing up and also did not want to treat side effect. I was glad I switched. The difference in the knowledge, experience, and competency was astronomical.
I also agree that it is week 8 that determines length of Tx. In addition, I have been concerned about your lower Ribavirin dose since you first posted it in March, that you were on 1000 mg instead of 1200 mg a day, which was clearly too low of a dose based on the recommendations.
If it was me, I would switch doctors. I would try to find a Hepatologist even if you have to drive further. I switched from a plain GI to a Hepatologist mid treatment because my GI kept screwing up and also did not want to treat side effect. I was glad I switched. The difference in the knowledge, experience, and competency was astronomical.
I have to agree with Cando and Idyllic on the Riba part. I don't understand why he would underdose you?
Anyway, you didn't have a very good lead-in at all which is not encouraging unfortunately. I think you had a .32 drop. My Dr told me he wanted to see a 2+ log drop and I barely made it by the skin of my teeth. Sounds like you are having a very poor response to the Interferon. I read somewhere that if you have <.5 log drop within the 4 wk lead in they would not continue tx. I will see if I can find the article.
Ask your Dr to bump up your Riba and wait for the wk 8 VL. Hopefully you can continue tx. Also when I started tx I didn't have any side effects and I didn't think the drugs were working. My wk 4 I was Det, wk 8 screwed up, wk 9 UND.
Good luck
Anyway, you didn't have a very good lead-in at all which is not encouraging unfortunately. I think you had a .32 drop. My Dr told me he wanted to see a 2+ log drop and I barely made it by the skin of my teeth. Sounds like you are having a very poor response to the Interferon. I read somewhere that if you have <.5 log drop within the 4 wk lead in they would not continue tx. I will see if I can find the article.
Ask your Dr to bump up your Riba and wait for the wk 8 VL. Hopefully you can continue tx. Also when I started tx I didn't have any side effects and I didn't think the drugs were working. My wk 4 I was Det, wk 8 screwed up, wk 9 UND.
Good luck
I guess I am Can-do's shadow today since I second what he said about the Riba. I just re-read one of you older posts and if it were me I would want to be on 1200 Riba a day. This is based on my opinion and personal experience. Sides kick in a different times and in different ways for everyone but I don't know. I guess when I treated first I wondered why I thought treatment was such a breeze. I felt so good and was able to do so many things. Then I discovered it would have been more advantageous (to say the least) for me to be taking 1000 of Riba rather than 800. I did not have enough of a drop in viral load at week 12 to justify continuing treatment.
The first time I treated I was naive and trusted my doctor to the extent I did not think I would have to do any research on my own. Now all these years later that I understand Hepatitis C is not the kind of disease where you can sit on your laurels. I have a pretty good idea how Riba works and Interferon works I wish I would have joined this forum sooner and asked. I treated the second time with the same doctor so don't get me wrong but this treatment works best with patient input and understanding.
The first time I treated I was naive and trusted my doctor to the extent I did not think I would have to do any research on my own. Now all these years later that I understand Hepatitis C is not the kind of disease where you can sit on your laurels. I have a pretty good idea how Riba works and Interferon works I wish I would have joined this forum sooner and asked. I treated the second time with the same doctor so don't get me wrong but this treatment works best with patient input and understanding.
You had a starting viral load of about 41,440 as stated above your now at 20,060 so you are not responding very well..... I have great concern on how your doctor is doing treatment. First he under dosed you on Riba (although slightly) to begin treatment... Then at 4 week lead in you had almost no drop. Myself I think treatment should have been halted at that time...... Next he says week 12 will say for how long you treat, again this is not correct.
Its treatment week 8 that decides, if detected at week 8 then continue all 3 meds through week 38 and then just peg and Riba through week 48.
*TREATMENT FUTILITY
If the patient has HCV-RNA results greater than or equal to 100 IU/mL at TW12, then discontinue three-medicine regimen.
----------------------------
You really need some answers from him or seek another doctors opinion.
Its treatment week 8 that decides, if detected at week 8 then continue all 3 meds through week 38 and then just peg and Riba through week 48.
*TREATMENT FUTILITY
If the patient has HCV-RNA results greater than or equal to 100 IU/mL at TW12, then discontinue three-medicine regimen.
----------------------------
You really need some answers from him or seek another doctors opinion.
This is very confusing still. But I think I understand better! I know it's not looking the best cause my VL barely went down but maybe 8 weeks will be better! Thank you all so very much
Web I was first dx my primary doctor only tested for the geno type then sent me to a hep doc and the took the first VL which was the start of treatment labs gonna rewrite this again exactly how I see it
HCV RT-PCR, Quant (non-graph)
Hepatitis c quantitation: 41.44 IU/ml
HCV log10: 4.617 log10 IU/ml
Test information:
The quantitative range for this assay is 25 IU/ml to 69 million IU/ml using a combination of Taqman real-time PCR (LLOQ 43 IU/ml) plus reflex to another Taqman assay (LLOQ 25 IU/ml) for low viral load samples that were detectable by the original Taqman real-time PCR assay but not quantifiable. The limit of detection of the assay is 7.1 IU/ml for hcv genotype 1.
THS
THS 1.180 uIU/ml Reference interval: 0.450-4.500
^^^that was the first labs start of tx.
Here's the 4 week
HCV RT-PCR , Quant (non-graph)
Hepatitis c Quantitation: 20,060 IU/ml
HCV log10: 4.302 log10 IU/ml
Test information:
The quantitative range for this assay is 25 IU/ml to 69 million IU/ml using a combination of Taqman real-time PCR (LLOQ 43 IU/ml) plus reflex to another Taqman assay (LLOQ 25 IU/ml) for low viral load samples that were detectable by the original Taqman real-time PCR assay but not quantifiable. The limit of detection of the assay is 7.1 IU/ml for hcv genotype 1.
That's what I got and I checked like 20 times to make sure it's correct! What do you. Guys think
HCV RT-PCR, Quant (non-graph)
Hepatitis c quantitation: 41.44 IU/ml
HCV log10: 4.617 log10 IU/ml
Test information:
The quantitative range for this assay is 25 IU/ml to 69 million IU/ml using a combination of Taqman real-time PCR (LLOQ 43 IU/ml) plus reflex to another Taqman assay (LLOQ 25 IU/ml) for low viral load samples that were detectable by the original Taqman real-time PCR assay but not quantifiable. The limit of detection of the assay is 7.1 IU/ml for hcv genotype 1.
THS
THS 1.180 uIU/ml Reference interval: 0.450-4.500
^^^that was the first labs start of tx.
Here's the 4 week
HCV RT-PCR , Quant (non-graph)
Hepatitis c Quantitation: 20,060 IU/ml
HCV log10: 4.302 log10 IU/ml
Test information:
The quantitative range for this assay is 25 IU/ml to 69 million IU/ml using a combination of Taqman real-time PCR (LLOQ 43 IU/ml) plus reflex to another Taqman assay (LLOQ 25 IU/ml) for low viral load samples that were detectable by the original Taqman real-time PCR assay but not quantifiable. The limit of detection of the assay is 7.1 IU/ml for hcv genotype 1.
That's what I got and I checked like 20 times to make sure it's correct! What do you. Guys think
Yay :0 Good for you for getting all your stuff.
Ditto what Can-do came up with 41,440 is around 4.617 log 10.
If week 4 is 4.302 it was considerably less than a one log drop. I came up with .30 but the viral load calculator came up with .32
http://www.hcvsociety.org/files/HCVLogDropCalc.htm
Glad you are feeling OK & good luck with week 8 :)
Ditto what Can-do came up with 41,440 is around 4.617 log 10.
If week 4 is 4.302 it was considerably less than a one log drop. I came up with .30 but the viral load calculator came up with .32
http://www.hcvsociety.org/files/HCVLogDropCalc.htm
Glad you are feeling OK & good luck with week 8 :)
I am taking this as 4.617 log10 as the start, which would equal numbers that would be close to 41,440.
If this is the case and now your log is 4.302 log 10 you are not even close to a 1 log drop......... Good luck.
If this is the case and now your log is 4.302 log 10 you are not even close to a 1 log drop......... Good luck.
I have the same questions Jules has. Did you type that result exactly as it is written.
I wonder if the doctor originally told you the incorrect result, stating 14.5 instead of 41.5.
There are many different ways to write the VL results. Personally, I find it very confusing. I wish it was standardized. However, I am wondering if that initial VL means that you had a starting VL of 41.44 million. The decimal point, as opposed to a comma, makes me think it means millions.
If you could type everything on the test exactly the way it is written, it may be helpful.
There are some people on the forum who do understand these various test result methods very well and I am hoping some of them will chime in.
I agree with Jules that your 4 week VL is 20,060.
I wonder if the doctor originally told you the incorrect result, stating 14.5 instead of 41.5.
There are many different ways to write the VL results. Personally, I find it very confusing. I wish it was standardized. However, I am wondering if that initial VL means that you had a starting VL of 41.44 million. The decimal point, as opposed to a comma, makes me think it means millions.
If you could type everything on the test exactly the way it is written, it may be helpful.
There are some people on the forum who do understand these various test result methods very well and I am hoping some of them will chime in.
I agree with Jules that your 4 week VL is 20,060.
I am just wondering if when you were originally dx if your Dr ran a VL? When I was first dx, by my GP, he ran a VL and Genotype. I think the VL was around 750,000. Then I went to Hepa Dr and he re-ran my VL which became my baseline of around 800,000 for tx. So there wasn't much difference. I just wonder if that is where the 14,500 VL # came from?
Also on the "start of tx lab"....the 41.44. Did you type that correctly? Compared to the log10 #'s it doesn't make sense.
No wonder it doesn't make sense I am confused also. Hopefully one of the others will chime in shortly.
Your 8 wk VL is the most important since you are on Vic. Hang in there!
Jules
Also on the "start of tx lab"....the 41.44. Did you type that correctly? Compared to the log10 #'s it doesn't make sense.
No wonder it doesn't make sense I am confused also. Hopefully one of the others will chime in shortly.
Your 8 wk VL is the most important since you are on Vic. Hang in there!
Jules
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