Week 4--Results "Not what we hoped for"

[kaysedi]

Hi Everyone,

I'm a female in my early 20s, began treatment 7 weeks ago, have genotype 2. Saw my doctor today for the first round of results (I believe blood was taken at week 4) and told me that my viral load hasn't dropped as much as we would hope for. I didn't ask him for specific numbers because I was quite upset, I had really been hoping for a better response. He told me not to worry, and that hopefully there would a better response by week 12, however I cant help being totally freaked out. My LFT's are completely normal but considering that there hasn't been a significant drop in viral count it isn't making me feel much better. I've began to imagine all sorts of worst case scenarios of not responding to treatment.
Has anyone been in a similar situation and had a better response at week 12? I guess I'm just looking for something to ease my mind.
Thanks in advance.

[kaysedi]

thanks will--i realized after writing that message that I was interpreting numbers incorrectly and after reading more information realized that the initial viral load isn't nearly as bad as i thought. heres hoping it will be much better in month from now.

[willbb]

Your Vl of 166,000 IU/Ml would be considered quite low
Will

[kaysedi]

thanks for all of the responses.
i found my initial labs, my viral load before beginning treatment was 1.66E+5/ IU/mL which I understand to be very high. perhaps this has something to do with the poor outcome. I'll know next week what my current viral load is, hopefully better news will come in the following weeks.

[MeWithC]

Pretty irresponsible for them to just drop a bomb like that on you & not explain further........sorry kaysedi.......
Relax & try not to let it bother you, it will drop......
With all this poison we're puttin' in us.....I hope/got to do something positive...

[desrt]

As you can see from this study

"An IL28B Polymorphism Determines Treatment Response of Hepatitis C Virus Genotype 2 or 3 Patients Who Do Not Achieve a Rapid Virologic Response"

http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract

your chances could still be anywhere from 87% to 29% for eventual SVR depending on your IL28B genotype. If your doctor hasn't done an IL28B test on you yet, he's just guessing.
And you should find another doctor.

" Differences between IL-28B genotypes were greatest among patients who failed to attain RVR (VD24 SVR rates: CC, 87%; CT, 67%; and TT, 29%"

[willbb]

It is correct that when an RVR(Und.. @Week 4) is achieved the overall results of success are quite high. For G2's approx 85 %,however the week 12 test ,as your doctor has suggested is the crucial one. If you are UND. at that time your chances are still good (not quite as high as RVR) but still good.
If you still have viremia @week 12 then the odds of success are remote.(some data to look at below if interested)

http://hepatitiscresearchandnewsupdates.blogspot.ca/2012/01/what-new-in-hcv-genotype-2-treatment.html

As you mentioned ..demand copies of all lab reports from your doctor and  possibly let him know that your are not at all interested in vague generalities when it comes to doing this important therapy.

It is there job to explain in explicit detail what is happening to their patients

Good luck on your week 12 PCR test and welcome ..
Will.

[kaysedi]

That is part of my worry--I was hoping for much better results at this stage since its genotype 2. My doctor is a GI doc that has been treating HCV patients for years. He didn't seem concerned but that doesn't really mean anything to me.

[copyman]

Generally GT 2 is the easiest to treat. Hopefully you are treating with a hepatologist or at least a GI doc that has treated many HCV patients. If not you may want to consult with one ASAP.
Best of luck

[kaysedi]

Thanks for your response. I really should have asked for the numbers, hopefully I'll be able to get a copy of my labs when I go for my regular blood work next week.

[Idyllic]

I would be upset too!! Could your doctor be anymore vague?

Do you happen to have any numbers so we can maybe evaluate the kind of drop you had? For example what was your baseline viral load and what is it now?

Your medical records are yours and if you don't do so already you may want to request a copy of your labs. All of your labs. Especially your baseline labs (the complete set of labs you had prior to starting treatment. It has your beginning VL). I would also ask them to fax or email your four week labs as well.

I don't know much about the SOC (Standard of Care) for Geno 2 so someone else might be able to chime in on that front. Hang in there and don't give up hope!!