Doc stopping treatment early for prior nonresponder

[turnbo]

Good day all,
During my last visit with HVC Doc he mentioned due to being undetected at week 4 with Incivik he will stop treatment at 24 weeks which is 3 weeks from now.I did mention about the standard care for nonresponders Geno 1 being 48 weeks and he said its not gonna make no difference.
Do you think this is a good idea for a prior null responder.

[psmike59]

wait till the 3 weeks are up. they almost took me off then it dropped dramatically and they kept me on, wish they took me off, won't go into it here. But good luck with the treatment hope it goes well and with less side effects as possible. oh and yeah dr's are mistaken all the time with this stuff, heppers are the experts, my doc didn't know what they hell he was doing, I have learned so much in the past 2 yrs, join groups and research, research research and remember nobody can give you advice there is much experiences as people with this stuff. It's hardcore stuff so be in for a  ride and take one day at a time. Good luck to you.

[beyondmwd]

I agree with your Dr.  I plan to get off the SOC asap.  Even if they offer me another 24 on it....I will not take it.  Did it for 88wks. in 2005-6.  Relapsed by 4 wk. ck.  Sorry, but I agree with Dr.  SOC is not the ticket.  These new drugs are whats working here. I'll go off the trial May 24.  Was clear at wk.2, UND by 8.  Good luck to you.  Beyond mwd

[slideman]

I too had some testing issues from tx in 2001. My vl was not tested at all until 7 months into tx. There was virus then, however 5 months of tx was with the old 3 times a week short acting int. At 7 months they doubled my int, by then it was once a week shots and I went und at some point. I was so sick from doubling the int I thought I would surly die, so I went off tx, but a week before I had a vl test. It came back und, but again it was 3 months between vl testing. So back on int I went after a month off it, because the test took 2 wks to get back then. A couple months later I retested and found virus again. So I quit. Hard to define what to call myself after all that. I did triple this time for 24wks, und at wk4 and have stayed that way. My last vl was in Dec 11. I will test vl at the end of the month(feb 12) My blood has returned to normal all the way around. I quit tx at 24wks. Mainly because I had to return to work, but it was really taking a toll on me too. From what I could tell at the time there was no data as far as % of svr for my type of case, and there were a lot of people who had been miss classified from prior tx. No choice for me but to stop tx. Good luck to you in whatever you decide to do. Will pray that it works for you!!

[turnbo]

thank you

[nygirl7]

Good for you turbo for advocating for yourself.  It sounds like it's important for you to know at the end of the day, you have done everything possible to beat this for good.  most folks would take the easier way out, but I think you are doing the right thing.

I wish you SUCCESS!

[turnbo]

Will,
Im  very sorry about your results.I was a partial responder.when starting treatment VL was at 550000.
i actaully dont even know if i actually cleared because blood work was done on 4th month into treatment and VL was 4000.

Turnbo

[willbb]

Hi turnbo.. where you a true "null " previously  (2 log drop at Wk.12  and did not get UND.

sorry meant .........<2 log drop at week 12

[willbb]

Hi turnbo.. where you a true "null " previously  (2 log drop at Wk.12  and did not get UND.

Isee you  had :
1)low VL at baseline <800,000
2) no damage and
3)Early clearance this time(eRVR) I know the Inci. protocol is 48 weeksfor "nulls and actually the labelling says that partials are also recommended to do 48.....however if you are a "partial "then the difference may even be less <4 %  .

Just thinking out loud.....especially given your doctor is recommending 24 and is a noted Hepa in a TP center .

Will .

[pooh55811]

"my doc mentioned ..... the odds of me SVR only increase by 4%."
(by doing 48 weeks)

Hmmm .... Maybe it is a small percent to the doc, but if you are in that 4% that does SVR due to 48 weeks of treatment (instead of 24 weeks), that 4% becomes a very large percent. In fact, it becomes 100% for you.

Good for you for doing the 48 weeks. We are all here to support you and there are several of us doing 48 weeks so we are in it for the long haul together.  

Best of luck!

[Revalation]

I would, at this point, check each and everything your doctor presents to you!

How did explain this decision to shorten your treatment in the first place.

Sounds to me like he needs to realize what it's like to walk in his patients shoes.

What if you were a less informed patient? If your treatment was shortened and

you did not maintain SVR what would he say then. Oh, "you" made a mistake.

You're only going to get one chance at triple treatment why not go as far as you

can. Even if you don't make it to 48 weeks go as far as you can possibly

go. Sounds to me like your tolerating the treatment so far why quit while your

doing OK.

[turnbo]

Thank you all for your comments. I finally visited with my doc earlier this week in person. He mentioned that it was up to me to treat for the full 48 weeks. That the odds of me SVR only increase by 4%.I told him that i will do the full 48 weeks.

[Grandmajane420]

Remember if you are on triple TX you won't be able to treat again in the future as you build an immunity to the new drug, thats what my Dr said. Don't screw up the treatment cause if it fails thats it until they come up with another new drug.
Does your Dr know that?

[turnbo]

I was undetected at week 4.
I diffidently agree with all you and been trying to get ahold of the nurse all morning but goes straight to voice mail. I will ask to do the 48 weeks and see what doc says.
I look at it this way it’s my life they are basing this decision on and if doing the 48 weeks of treatment will increase my chances of SVR then aim all for it.

[frijole]

HI there - glad to see you posting. Well, I tend to agree with what is said here.  In your first treatment they only did two viral load tests.  At week 12 you were 4000 and after the 48th week you were 160,000.  So even if you did get to UND at some time you must have had a breakthrough.  Assuming you were compliant and dosed properly the first time, I think it would be scarey to do only 24 weeks this round, as glorious as that sounds.

What I find interesting is that we both go to the same transplant center in Dallas although we have different doctors.  They are hepatologists and know what they are doing.  I trust my doctor and I know you trust yours.

However, my doctor too suggested at one of my appointments that I could treat a total of 36 weeks if I am UND at week 24.  His original plan was that I would treat for 48 weeks because I have cirrhosis.  MY bx showed about 50% stage 3 and 50% stage 4 -- and he said we treat as cirrhotic.  

I think it is far safer to go the entire 48 weeks and unless I can't handle it that is what I will do (and the doctor agrees with this).  I think if you talk to your doctor about this and explain your reluctance to do 24, he will probably agree with you.

fellow west texan
frijole
Let me know what you decide.

[JasmineT]

Definitely not the protocol, as others have said.  It would be interesting to know what information he is basing this recommendation on.  It might be good to bring the hcvadvocate link above with you and ask.  Perhaps he has some new data but I would be very cautious about going against the recommended protocol.

[Diane1186]

I am Geno 1a and was not undetectable until week 6-7.  My treatment is expanded to 48 weeks.  I don't understand why your doc would stop treating, when did you become undetectable?

[turnbo]

Thanks all for your input.

[can-do-man]

Yep pooh is correct, from their own website.

Prior Partial and Null Responder Patients
Triple Therapy
INCIVEK,
peginterferon alfa and ribavirin
Dual Therapy
peginterferon alfa and ribavirin
Total
Treatment
Duration
All Patients First 12 weeks Additional 36 weeks 48 weeks

www.incivek.com

[Gerbils]

Right on. Good luck, Turnbo!
G

[willbb]

Good post pooh ...

[turnbo]

Yes i agree..

i will call th nurse tomorrow and ask.Myself would rather treat for th full 48 weeks.

thank you for the info.

[pooh55811]

First let me say I am not the expert on this forum. I am still learning. However, I think your doctor is mistaken. The studies show that ,as a null responder, treating for 48 weeks gives you a considerably better chance at SVR  (56% with 48 weeks and only 17% with 24 weeks). That is a big difference. If it was me I would treat for 48 weeks.

Here are a couple of links that discuss the studues:

http://www.hivandhepatitis.com/2010_conference/easl/docs/0416_2010_b.html

It is beneficial to read the article but you can go down to the table with the responses. Unless I am misinterpreting something, prior null responders who treated for 24 weeks had only a 17% SVR rate. Prior null responders who treated 48 weeks had a 56% SVR rate.

Another article:

http://www.hcvadvocate.org/news/Tela_EASL10.html

Again, go down to the table, about half way down. The numbers are the same: 24 weeks gets you 17% SVR and 48 weeks gets you 56% SVR.

If I am incorrect about these numbers, someone who is mopre knowledgeable than me will post and correct me, but I think I have interpreted these numbers correctly.

Your doctor needs to look at the data on the length of treatment. If you show him the data, he can see it for himself. (Although, he really should know this already.) If you are supposed to treat for 48 weeks and he won't do it, I would get another doctor who will treat you for 48 weeks.