12wk pcr not good news

Question

Just got results from 12 week pcr.  Start vl 11,000,000 current vl 467,000.  Not a 2 log drop. I was told I could continue tx and will probably clear but when I discontinue tx I will have a 90% chance of it comming back and it is suggested I stop tx.  Last night would have been shot #14.  I am choosing to stop and have a dr. appt on 10/03 to discuss this further. I believe things work out for the best and maybe continuing tx could result in some permenent damage so it is not meant to be. Maybe I was meant to wait for bigger and better treatments.  I am 1a grade 2 fibrosis.  Well, I'm ok with this, I guess. Now I'll achieve a clear head, the ringing in my ears will cease, I'll stop coughing, the rash will go away and I'll get my energy back. I'll still check in and see how everyone's doing.  Your have all been my companion the last 13 weeks and have made my tx journey alot easier and helped with my peace of mind.  Thank you all.  Regina

Indiana · Answer

Note that the study you cite is done on behalf on the insurance people who would like nothing better than to find a way to stop people earlier to save themselves money on drug costs. The patients were not the primary consideration in that study. It was all done with and emphasis on how to save the insurance company money.
 Type 1's do not usually clear as easily or early as the other genotypes. As much as they want to drag us down that early clearance road the 24 week test is still the "standard" for type 1's. You had a "significant" drop. That is key. These Pcr tests are not FDA approved. Why not? Because they just are NOT accurate enough to actually use the numbers for anything but a "general" trend. You could have that same sample tested again and get an entirely different result. You just can't us the actual numbers to make these decisions....not when your that close.
 Since you have already made the decision to stop I guess the whole point is irrellevent but I would have continued if it were me.
 I wish you well in the future and hope you eventually find the answers...........

quak · Answer

I am sorry about your news, but listen to this:  My friend 1a was on Peg-Intron for 16 weeks and did not clear but switched over to Pegasys and cleared at 26 weeks.  She has to continue on tx for 62 weeks, but she's doing it and hoping for the best.

Good luck, Lori

Helyn · Answer

I'm so sorry to read this.  I have been where you are once, and am now on round 2, shot 4 coming up, waiting for 12 weeks to see what the Heptimax shows.  Though I am certainly hopeful it will work this time, I am realistic and believe as you do - if it doesn't work, something better will come along soon.  Enjoy being med free!!  Helyn

willing · Answer

thanks Regina: strength and resilience like yours are an inspiration. This is a tough moment, one that all of us on tx, particularly the 1s, have to make allowance for. I think BobK described his reaction as "disappointed but not surprised". I am also a 1 at stage 2 and plan to follow the same path if tx fails : emphasize fibrosis reduction and keep an eye on the research. One other point, note the quote "It is therefore unwise in clinical practice to base important treatment decisions upon a single HCV RNA determination." from the following recent assessment of reliability of VL tests.

sonata1 · Answer

Sorry Regmel Definitely know what you are feeling now. I was also faced with the same limited choices.  Upon advice from my doctor I too stopped.  There are things in the pipeline not here as quickly as we need them to be. We will just have to wait for them patiently. Never give up!

Dirac · Answer

I would like to discuss the numerical drop of your viral 
load. It went from 1.1 x 10^{7} to 4 x 10^{5}. It is very
close to 2 log drop. Yes you should have got 1.1 x 10^{5} 
to reach the 2 log drop, but I think that the difference
between that hoped for result and what you already got
is insignificant and could be understood as a statistical
fluctuations.
Please contact your doctor.
Good luck.

mikesimon · Answer

Sorry about your news. Hopefully some better treatment will come along soon. Like you said, at least now you can start to feel better. Good luck. Mike

Martee · Answer

I have to agree with Dirac. You may not have gone down two logs, but you sure came close. I'm not sure I would want to stay off treatment at this point if I were you. Could you be just a slow responder ? I understand they are extending therapy for slow responders. 
 You still have a good chance. Talk it over with your doctor before you make your mind up. This therapy and its results are not carved in stone. Good luck to you whatever you decide. :)

regmel · Answer

Thanks for all of your responses.  maybe I should have waited for my dr. appt on 10/03.  But I couldn't wait for the results and called the hepc treatment coordinator. She told me that it was up to me but I only had 5% chance at svr. Well, giving it up to me made it easy to decide.  Get the heck off this stuff.  I have been VERY symptomatic. Then I read this on hepatitisneighborhood.com:

EVRs Relationship to SVR  (EVR  early viral rresponse)
According to the study authors, between 69 and 76 percent of patients who took part achieved an EVR at week 12 after PEG-Intron and ribavirin was prescribed, and between 67 and 80 percent of those patients went on to achieve a sustained virologic response after the end of treatment at 48 weeks.

"Patients who did not reach EVR did not respond to further therapy," wrote the study authors. "If treatment had been stopped in patients without EVR, drug costs would have been reduced by more than 20 percent."

Davis told Priority Healthcare there are no exceptions to this rule. "If EVR is not achieved, SVR does not occur," Davis said. Maintenance therapy may be the one exception, which might be prescribed to patients who dont respond early to treatment, to theoretically help prevent liver disease like fibrosis. But Davis says maintenance therapy is "unproven at this time. It has to be considered experimental therapy."

This made me stop and is probably how my dr. feels.  I'll see her in a couple of weeks and see if there are any alternatives. 

I wish the best to everyone.

Galen · Answer

Wow, that is pretty darn close to a 2 log drop.  Like Dirac, I'm not sure that the difference between 100,000 and 467,000 is even statistically important.  I really think you should talk to the doctor before quitting tx.  Hang in there.

TravisB · Answer

test

willing · Answer

here's the full Davis study if you want to read the rest. Other studies have reported a 2-3% chance of SVR. This is all with 48 weeks. Longer tx probably will give better results for slow responders but that remains to be proven. log(11,000,000)-log(467,000)=1.37 if I can type today, which is not 2 but definitely shows response. Stopping seems like the right call, but it sure would be more prudent to talk to the Dr. first...

doll face · Answer

I am so sorry that you have decided to quit treatment, but can definately understand your reasoning. I just finished my 13th week. My doctor just called to give me the results of my 12 week blood test (was very anxious to find out my viral load) oh but the lab forgot to order it.He was also worried because my wbc dropped to 1.6 and hemo to 9.9   but on the good side my alt 29 and ast 27. This is my second time on tx and I am considering stopping too. The toll that this is taking on my body and mind seems hardly worth it sometimes when I see that my liver enzymes are good. I wish you luck. There are some very good new drugs coming out soon that may give us better results with fewer sides. Lets pray that is true. God bless and please let us know how you are doing. Kim

12wk pcr not good news

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