I am going to give background for my post below, plan to change doctors and looking for input on transition. Thank you in advance for your comments, this site provides really good information.
I have been taking victrelis, weight based peginteron for 180 lbs. And 1,000 mg of ribavirin.
Nurse called with 24 week vl results, positive. I had been <25 iu, detected trace amount but not quantifiable since week 8. The doctor kept telling me this meant undectable, have had concerns with how he interpreted the labs since receiving my 12 week results. At week 4 vl was 1,520 down from 8,000,000. Doctor decreased my peginteron due to low wbc and neutrophils on 3 separate occasions, once before week 12 due for 1 week, week 13 and 14, and from week 19 on. I did ask about rescue drugs, during my 16 week checking and doctor acknowledged they were there if needed. All in all, 30% of the 24 weeks was taking a reduced injection, never went on rescue drugs. My MRI shows I have stage 1 fibrous matter, found this out from a different doctor, requesting they take over my treatment. They recommended I stay with the doctor treating me for the virus.
I am also caring for my dad who has multiple health issues that are now affecting his cognitive abilities and motor skills. I have concerns about how the stress factors into my ability to clear the virus and have a short fuse, which is not fair to my dad.
My decision to treat again has to factor in my dads needs too, have no family locally to help with day to day. What are the things that I should consider for the transition to a new doctor and treating again?
'Nurse called with 24 week vl results, positive.'
If this is true, then treatment is over. You have experienced viral 'breakthrough' and have no chance of SVR.
Get a copy of the result to see the results and maybe have another HCV RNA test to make sure the result are accurate.
'My MRI shows I have stage 1 fibrous matter'
An MRI can NOT stage liver disease. Either you misunderstood your doctor or your doctor (what is their specialty?) doesn't understand the basics of diagnosing liver disease.
Did you have a liver biopsy?
What were the results?
In the future find a gastroenterologist who is experienced in successfully treating hepatitis C and who understands liver disease and how to properly diagnose and treat it.
Have a liver biopsy performed to find out if you can wait for new non-interferon based treatments.
Nurse called with 24 week vl results, positive. I had been <25 iu, detected trace amount but not quantifiable since week 8. The doctor kept telling me this meant undectable, have had concerns with how he interpreted the labs since receiving my 12 week results.
Yes ...if your doctor intepreted these lab results as UND. he was incorrect in his assement..If one has any Det. virus (even)<25 then there are still virons present ,just not quantafiable <25.
Your post is a little confusing .you say "
it was "not guantifiable since week 8. Does this mean you were at one time UND. before that then virus showed up or that you were never UND.
You would be considered a "partial responder" and the likely reason for the failed therapy was the fact you were somewhat insensitive to the Interferon.
Hector is correct when he states that this Tx has failed unfortunately and you would be best to discuss with a doctor(possibly not the current one because ofhis ineptness in the lab interpretations) about the future tx. that may be on the market in the next few years without Inteferon.
The MRI was done at mayo at the order of a doctor specializing in liver. I am going to ask for a biopsy. I went to mayo because the doctor treating the virus didn't order a biopsy or an mri, he used my lab results. Mayo has copies of all lab reports.
I have only been given a verbal result of undectable since week 8, never a report with that conclusion by the doctor treating virus.
Ask for hard copies of all of your lab reports. That way you can see your lab results and compare them. Also, for the viral load tests, they should specify on them whether you were Detectable or Undetectable. For instance, they could say <25 Detectable or they could say <25 Undetectable.
Also, I agree with Hector. Get another VL test ASAP just in case it was a lab error.
I have copies of all labs through week 12. The vl checks indicate detectable in trace amount, but not quantifiable. When I questioned the doctor, he told me that meant undetectable because it was below 25. I'm disappointed the treatment didn't work, but more disappointed the doctor let the nurse tell me.
Maybe this is common protocol for infectious disease doctors/practices, know there case load is high.
Unfortunately, it sounds like your doctor misinterpreted your lab results. If the PCR said DET<25, it was detected. My husband was on triple tx with Incivek and the stopping rules are different for Incivek than for Victrellis, but my guess is that your doctor had you continue with treatment longer than you needed to.
If it were me, I would switch to another doctor, a gastroenterologist or a hepatologist who is experienced in treating Hep C and more knowlegeable about the current and future treatments. I would ask for a liver biopsy so that you can be more certain of your stage of liver damage. And then I would talk with the new doctor about next steps. So far as I know, there isn't any other approved treatment that you can do right now. To my knowledge, you can either watch for clinical trials and if you find one that you and your doctor think may be beneficial for you, try to enroll. Or you can take the "watchful waiting path and you and your doctor can determine how frequently you should follow up with him to monitor the status of your liver while you wait for new treatments that are currently in trials to be approved.
Thank you for your input. Met with my current doctor to review the lab results. My vl is at 50,000 after dropping to 1,520 (week 4) and then detected at trace amount but below 25. He told me to wait for new drugs, there were no clinical trials in our area, and said goodbye.
It appears im a non-responder with current treatment drugs. Will be forwarding medical records to the mayo doctor for continued care.
I just don't know if my 24 week vl results are in line with others who were non-responsive. Is there any data for this group?
Again, I am sorry that treatment did not work for you.
You had a good response with your 4 week lead-in. Then, your VL stayed <25 for the rest of the time you were on treatment.
I looked at Frijole's spreadsheets and there are a few people who never cleared the virus. Most of them either never dropped as low as you did or they started increasing earlier in treatment. I don't see anyone who stayed <25 throughout their treatment. Most never made it as far as you did (24 weeks). Their viral loads dropped some and then started going back up fairly soon.
Frijole has been keeping stats on some of us. If you would like to look at Frijoles's spreadsheets go to her profile page and click on the white sheets. Many people are not yet finished or have not reported back, but if you look through the sheets you can see towards the right hand side of the page she had some listed as Tx Failure. You can get some idea of the response and when their viral loads started going back up by looking at these spreadsheets.
To get to her profile page, click on the link below and then click on her name and it will take you to her profile page.
Welcome to the forum. I am sorry you were a nonresponder.
I was about to upload new data this morning so you may not find anything when you look. I will get it done as soon as I complete this post.
Hi advocate - how are you this morning
dutti, I think the problem you had with your doctor is unfortunate but prevelant. Some doctors do think that <25 is enough to be considered UND. But everyone here is correct. Any dectectable virus, even tho not quantifiable means not UND. I would take a guess to say you get your labs at Quest. Is this correct? LabCorp and Quest use the same test, but LabCorp takes it another step further and will report qualitatively down to 7IU/mL.
I question your doctor's decision to reduce the Peg Inf rather than using rescue drugs . What exactly was your white blood count and your ANC?
Also, as Hector said, the MRI cannot stage your liver and you should request a biopsy.
All of this may be a mute point right now as your primary concern is your dad. When you are in a position to treat again, you can check into trials. We have many members here in Florida and there are some premiere places to treat - the FL members can address that. Meanwhile, if you can get a biopsy it might give you an idea of whether you have a lot of time to wait.
Hi all, seems like a good place for a reply all function.:-)
Just received my medical records, have to sift thru the clinical notes. Used Lab corp for testing, all of the results on doctor's practice stationary. My wbc hit 1.0, unsure of ANC will check. Per my doctor, I did not meet the protocol for rescue drugs. He also told me that biopseys are done on a case by case basis. I'll post lab results in the tracker over the weekend.
I appreciate everyone's support, input and kind words:-)
"Biopsies are done on a case by case basis"
I would change doctors ASAP and check with your insurance company.
There has to be some way to determine the presence of liver damage. It does not even have to be a biopsy. There are non-invasive ways to get an idea of the state of your liver. There is pro and con to each method and it helps to have a doctor who is willing to advocate for you.
Grrr I am angry on your behalf. I can so relate to your treatment experience. I too put blind trust in the doctor and did not learn about the Standard of Care for Hepatitis C when I treated the first time. I was stunned when I joined this forum and discovered I was not on the right dose of meds. It would have never occurred to me to question a doctor who seems so competent.
There is a wealth of information on this forum as well as the tools to find information elsewhere. I strongly encourage you to see another doctor in the future.
I read an old post on here guesstimating the ANC was around 46% of WBC. If that is even close then it's possible your ANC may have indeed been very low.
PegIntron is peginterferon alfa-2b. The About site contrasts peginterferon alfa-2a and alfa-2b and says that 2b is weight based.
The dosing is on here (180 lbs = 81.64 kg)
In the middle it says:
The prescribing information for the specific HCV NS3/4A protease inhibitor should be consulted for information regarding dosing regimen and administration of the protease inhibitor in combination with peginterferon alfa-2b and ribavirin.
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