extend treatment news / Albany

[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

[jmjm530]

Perhaps I didn't make it clear enough in my second post that I wasn't 100% sure of the study details. In any event, instead of critiquing my read and leaving us all wondering, why don't you enlighten us as to exactly what the study does suggest for someone who is still detectible at week 48 and for discussions sake becomes UND at week 60.

[drofi]

Hi Jim,

sorry, you did not read the Arase-study correctly. They did not suggest 60 weeks after becomming UND. It depends... You should read the study again.

Albany, the chance to be a low-level-nonresponder is huge in your case, as Zazza wrote, or even a true nonresponder. I wouldn't continue. Please list the PCR-counts. What means "close enough" to a 2log drop?, what were the numbers?

Best, drofi

[nygirl7]

I have never heard of any reputable doctor (except for this post of Dr. D) letting someone who would not do a PCR at week 24 and advise to stop treatment if still positive.  

Unfortunately these new little studies that suggest you might get to SVR after week 24 seem to fly in the face of the information that we've gone by for years - that the chance is close to zero.  

some people (myself included) have done 72 weeks successfully BUT I was UND after week 12 but before 24.

To me, it does seem extremely negligent for a test not to have been done, especially since you were NOT UND at week 12 - which is crucial to determining the length of treatment.

I would completely advise you to go and get a second opinion immediately - I believe almost all of us would agree that anyone still detectible at week 46 has failed interferon/ribavirin treatment.  i can't think of one doctor who would not agree on that.

A slow responder would have been way back when you were still not even hitting a two log drop at week 12.

Good luck. I certainly would not consider doing any further treatment at this time but rather stop regroup and then find a new course of action. This present one is just not working it would seem.

[Trinity4]

There is much reference to what "Dr D." says.  I would probably take what he has to say under consideration before anyone else but Dr. D is only one of many experts in this field and his viewpoints don't necessarily reflect those of other leading specialists.  We have to keep that in mind.  He is only one guide of many.

[jmjm530]

We're in agreement she should stop, but Dr. Dieterich did not recommend across-the-board stoppage if not UND at week 24, here in answer to "Smaug"s question re extension: http://www.medhelp.org/posts/show/579284

That said, Dr. D. did not elaborate how long he's allow someone to continue without being UND.

Perhaps you are confusing his answer with Dr. Mitchell Shiffman's comments that I posted in Smaug''s original thread.

[copyman]

your doctors should be sued for malpractice for not giving you a test at VL 24 weeks! This is standard protocol and I have never heard of not having a test after 12 weeks. If this is the case they have caused you needless suffering when you could have stopped at 24 weeks if still detectable. if you are thinking about re-treating FIND A NEW DOCTOR ! Best of luck