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287900 tn?1218647818

extend treatment news / Albany

So I got the news today that after 46 weeks of Treatment for HEP C that the virus is still detectable in my blood.  

I have genotype 1A and have been on Pegetron since September 2007, doing a 48 week course of weekly injections and 5 Ribavirin a day.  My viral load was something like 1,141,000 PRIOR to treating, and think stage / grade was 1.5 & 2.   After twelve weeks they tested the viral load, and I had achieved ‘close enough’ to a two log drop (which translate to a drop to a level of 10’s of thousands from millions?).  
What this means is that I was to continue treating and push for a further drop to the desired “undetectable” level. After 46 weeks I did the viral load test last week, and was informed today that I am still detectable, although the viral load is still dropping, and that I am a “slow responder”.  

Now what?  I had asked my nurse ALL along, throughout the treatment, if we would be able to extend treatment IF I had not achieved the viral responses, and was repeatedly told that in her experience it is not feasible. She said that it was her experience that the doctors in Canada do not seem to go for extended treatment and that this was partly due to difficulty getting approval for an extended “section 8”: (read government approval for funding assistance).  I referenced the practice that I had read about in the USA where treatment can be extended from 48 weeks to 72 weeks to improve the response and sustain it.  

When I met with my doctor last week, this was the first thing he said- we may have to extend treatment if the virus is still detected, another 6 months he said, and ordered the blood work so there would not be an interruption in treating as my last ‘originally’ scheduled injection would have been this Friday August 8th.  

So not I am here- days away from what I thought would be my last injection- sad that I have to go, yet determined to continue to battle.  Besides the most obvious reasons for wishing treatment to be done, like an end to the terrifically horrible, cycling, various and ever present side effects I think I am more focussed on my the fact that I will have to delay getting my hair done – (lightened or red, whoo hoo,) and getting a new bed set- as mine has suffered horribly through this hell too!

So- what is the purpose of this post?  Really, I think I just wanted to inform you all of what is up.  There are a few more specifics that I hope to attain, and will actually post more direct questions to seek your experience, strength and hope in following posts, as I think this is more of a vent here.  

Thank you all for listening, and for allowing me to share my news with you.  Thank you all for being here for me throughout this treatment.  Although I do not have the energy to post much, I do read and stay in contact with this forum and believe it has been a great source of comfort to know I am not alone.  
Albany – from Toronto , ON

30 Responses
Avatar universal
The 72 week extended treatment studies assumed you were undectible between weeks 12 and 24, so they do not apply in your case.

A new study suggested 60 weeks after becoming UND but I don't think anyone was included who was still detectible after 48 weeks.

Dr. Dieterich in our professional forum said he treats patients for 48 weeks after being UND but again I don't think he would keep someone on treatment for as long as you are and still detectible, although you could post to him here in our professional forum and ask the doc directly: http://www.medhelp.org/forums/show/272

Personally, and especially given that you only have stage 1.5 liver damage, not to mention what you describe as bad side effects,  I'd give serious thought to stopping now to cut your losses. At the very least, try to get another opinion or two from experienced liver specialists (hepatologists) before making any decisions to extend.

If I read your post correctly it appears you were not tested for viral load between weeks 12 and week 46?  This alone would make me question the judgment of my medical team and seek a second opinion.

Wish I had something more positive to say and hope you and your docs make the right decisions moving forward.

-- Jim
Avatar universal
Here's the study recently posted for what they call SLVR (super late virological responders) but what some other studies might in part term Null Responders:

Perhaps someone can see if any of the SLVR's actually were still detectible at week 48. But even if they were and had good results, keep in mind that you are still detectible and according to that study would have to add 60 weeks to the date you became undetectible. Sounds like you really need some professional advice and not just from your current team.
287900 tn?1218647818
that is exactly what i was wondering- why is this team so  ... grrr .... NOT , **** i dunno.  need someone to see, here near or in Toronto would be great.  had a few more questions i had wanted to post, and will- but in morning when i am more able to clearly say what i am trying to say.  thank you though- i was hoping to hear from you- and will follow u pon those links, post to the professinal, and GET SOME BLODDY NUMBERS from my ever elusive 'team'.
and although news is not great- i still feel hopeful ... and celcbrate 8 years 'clean' this friday- so am moving forward with a celebratory attitude, seeking more info and focussing on the positives :)
thank you, thank you, and thank you :)
Albany :)
Avatar universal
That's wonderful that you are 8 years clean and certainly worth celebrating in it's own right! If this doesn't work out, you should look forward to the newer drugs now in trial. Your medical tream seems more than "elusive" but absent for most of treatment given your lack of viral load testing. Maybe someone in Canada will suggest another doctor to see. If you can make it to the States we can suggest some here at least for a one-time consult. Good to see you posting again but wish the circumstances were different.

All the best,

-- Jim
Avatar universal
I would not push treatment any further. Some hep C patients can unfortunately have a minimal residual viral load all through treatment. Maybe that is what has happened in your case? Do you know what your viral load was at week 46?

It is horrible to hear that you did not have a viral load test done at least at week 24 to see that you were UND at that time. I understood Dr Dieterich in our professional forum to say that only those UND or detectable at <10 IU/ml at week 24 should continue treating. That sounds very reasonable to me, since there is only one study available that suggests continuing to treat if detectable at week 24.

If I were you, I would stop treating now. But I would want to know my end of treatment viral load, so this number can be used to determine viral response to SOC and choice of treatment in the future.

It is interesting that you only "almost" had a two-log drop at week 12. Maybe this in itself was a clue that treatment was not working as well as it should have.

I feel for you, but do hope that you in the future will reach SVR. And do celebrate being clean for 8 years. That is so great!

Avatar universal
At the very least you can look forward to detoxifying from the medication.
Demand copies of all your blood work.
Of particular interest is the twelve week PCR which was 'close enough' to a 2 log reduction.Let's see the numbers!
A 2 log drop is the bare minimum to justify continuation.
Don't remain a patient at whatever facility you have been attending as it would appear that are just shooting from the hip.
You'll win in the end if you are treated by a competent team.
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