Il28b T/T:3x treat vs wait non interferon

[candyce1953]

I just found put I am IL 28 1B : TT
Have had hep c 41 year
Last biopsy was 4 yes ago 2/2
Have new biopsy  tues expect progression at least 3/3
VL 865,000
Was waiting for 3G treatment

But now that I know TT maybe treatment  won't work maybe should try for clinical trial for non interferon cocktails

Please help suggestion

Anyone positive SVR with TT to new triple therapy here?
Thank you

[candyce1953]

Thank you for writing back
Yes I am 1b and will have to do 48 too I am sure

Did u clear after 48?
And if I can ask do you know your phenotype?

If I were to do a clinical trial ( doubting it now)
I would only do if the placebo was given the treatment drugs at the end

[sandysf]

let me clarify,  i did not fail, just found out I was on placebo so was only getting peg/riba.. for me that was not okay since I did not want to do 48 weeks and wanted the chance at higher cure rate since I am a CT.  I am 1a.  I could use rescue drugs but they did not pay for them.  

[candyce1953]

Hi oldlabrat and sandys

Thank you for writing back
So u were both in study's that failed?
I am so very sorry

If I could ask what your geno and phenotypes ae?

Also there r some study's with rescue drug if placebo yes?

But I am leaning towards Vic

I can not afford either
I have to find out about patient assistance

Does anyone have some suggestions I know a couple

[sandysf]

I know many people with Hep C get in a great trial and get cured.  But I just had a negative experience in a Gilead trial where I had a 75% of getting study drugs but received placebo.  So if I was a stage 3, I would go for the higher odds of Vic/Inc and forego the trial, of course that is assuming I had insurance to cover costs.  Wish you luck with your biopsy and that fibrosis has not progressed.  

[OldLabRat]

You'll going get it don't worry about that!
They told me the same thing about the
sugar pill,  it was a bunch of B.S. the real
study was seeing how much ribavirin it
took to kill me they really pushed it.

[candyce1953]

I am sorry to hear joy5116 the fast a progression you ar experiencing

Mine has been slow so far( 37 year  to 2/2)

But who knows what Tuesday biopsy will bring

If it is 3 or more I will most prob go with Vic and not wait
Unless a phase 3 Clinical trial comes my way

I am Afraid of the odds of a clinical trial at 3 or above( no time to mess around)

If I am still at stage 2 , I would wait for the right clinical trial

I wasn't clear from what you wrote, are you 2 or 3 grade.?
And what geno and phenotype?
Did you have a fibro scan and then one biopsy?

This will be my 4 th biopsy over the course of 41 yrs
Many sonograms but no fibro scans

[joy5116]

I have hep c 42-43 years. Last fibro test was f-2.  Treatment naive, had 1st biopsy last week.  They wound't give me results over the phone other than to say I'm not cirrhotic.  I'm getting in a trial ASAP, have been waiting months for this opportunity.  I've heard too many stories about the slippery slope from f-2 to f-4 and becoming cirrhotic.  In 7 months I went from f-1,
f-2, in another 6 months F-3.  Any opportunity to arrest the progression I think is wise.  Yes, it's a personal decision and I'm scared.  Treatment scares me but what's the alternative?  Waiting?  They say people with hep c usually die of other causes but as far as I know fibrosis is progressive and scary.  For myself it's no brainer.  I just hope I get the majic combo and not a placebo to last another 6 months.
Joy5116

[candyce1953]

Thank you!
I am hopeful
Please keep us posted on your progress!,!,
Thank you

[somuchmore2]

I think both treatments work and so choice is between you and your doctors.

Best wishes to you,

[candyce1953]

Wow that's great somuchmore2
Congratulations
I am afraid after looking at Sides I will be better with Vic though
R u staying. On TX for 48 or less.?

[candyce1953]

Thank you everyone!!!
I will check out the clinical trial site,And thank you for the encouragement to treat,and to get thru the biopsy

I was just thrown, because I was pretty excited about 3xTX being 80-90%
had been waiting for vertex approval for years, like everyone else

Didn't expect the TT, but 50-55% is better than nothing

So if I am stage 3 I will give it a shot( or 48 shots: little pun)

If I am still 2( doubt it) than I will wait for the orals
Much love and thanks to all here,,,,,!

[streamline569]

It's looking good for cirrhotics with eRVR and this article doesn't mention the cc ellele

http://www.hepcmo.org/hepatitis-c-cirrohis

[willbb]

The fact that you are TT is really not that relevant to your success with these new meds ,as I copied the results of the Tela trial above for you.
It is a fact that further along in progression of liver damage may have an adverse effect on success,however unless you have decompensated cirrhosis there is always a chance of treating successfully.
You mention ,the chances of failing treatment and yes unfortunately there is that chance,regardless of whether you enter a trial or treat with  currently approved meds.

The resistance issues are not yet fully understood  however  if you have st3 or greater then that should be your main motivation to get treatment under way rather than the fear of failure.

There are some interesting trials going on currently and if you have not had  a chance to have a look  here is the site to search for one in your area.

,http://clinicaltrials.gov/ct2/search.

Good luck with whatever you decide and good luck Tues. with the biopsy..
Will

[UKgirl55]

Abbott pharmaceuticals is showing good results also. I believe there will be a trial that's starts screening in NY at the end of this month some time. I'd start calling around to find out where that might be. This will be an all oral trial.

[curiouslady1]

I think the new Pharmasset orals principally PSI 7977 are very powerful and tend to wash out a lot of differences in  GT, VL, ILb28 status, fibrosis score and general illness as well.  I am over 60, diabetic, thyroid disease, starting VL 12 mill, infection 40 years, TT.  Yet the PSI 7977 made short work of those little buggers.  In a week of monotherapy I dropped 5 log and was UND within 2 to 3 days of adding the second experimental drug BMS.  The study mates in the same arm (with a 7 day monotherapy lead in) also experienced the same thing though we have different loads, gt etc.  

Your major concern is what trial drug to do and how long to do it for.  If they don't think you can do it for whatever reason, they won't let you in.  

[candyce1953]

Thank you Frijole  I am afraid TT and prob 3 or more of fibro is going to make me hard to treat( also had hep c  it 41 years )

Want to be as sure as possible that 3x TX Vic doesn't result in viral resistance to new clinical trials of PI or visa versa

I am curious I think you were keeping a list of results on this group from 3x TX

How are TT"s doing on TX?
Or are we the failure rate?
Thank you so much
It means allot having you all here
And not being alone

[frijole]

I would wait for the biopsy results.  If you are 3 or 4 and you can get into a trial fine, but if you can't consider the triple with Victrelis which does not require large amounts of fat.  There are some trials without placebos - you just have to be very selective.  Have you gone to clinicaltrials.gov and punched in NY and hepatitis C?  See what is out there.

It sounds like this may be a good time with a supportive family, adult children and the ability to stay at home.

welcome to the forum
frjiole

[candyce1953]

Thank u will bb, curious lady and hrseguy and ny girl
I am in ny area too
Am in good shape physically accept mild controlled asthma and thyroid with meds

Do have some digestion problems sensitive stomach so was a bit afraid of 3x treat vertex
Was leaning to Meeks
But my bubble burst today with TT Ilb 28

Now I want to try to get into a clinical trail while I am still a candidate because naive TX

My only worry is if I got in to one and not a good group
And say didn't work
Would I then develop  viral resistance? then work against me on vertex or merk  treatment????

If am grade 3 or worse 4
Which is my best chances?

Cause viral resistance I read can be 1-3 years to clear if developed

Too much reading that I am not sure I really understand

What would u all do?
I won't know biopsy results till 2nd week December

I would be diligent and successful with TX on either in terms of compliance and organization of taking medication properly
Do not smoke or drink
Eat right and exercise
Have wonderful husband who cooks :-)
And great adult kids
And paint am artist so I am home

Just don't know what the right path of TX is best if I can get into clinical trial considering the TT

Thank you everyone sooooooooo much!!
Have excellent support system
And am artist and paint at home
Also

[curiouslady1]

You mention that you cannot digest fat and wonder about the drugs on the market which require it.  You also mention you have a thyroid disorder.  Has it been treated by traditional medical methods and been stabilized?  You don't mention where you live but that would be helpful. With a GT 1B and a BMI under 35 and most medical conditions stable you would be a highly desirable candidate for a Pharmasset all oral trial I believe.  However, without pretty specific biopsy results, you cannot really move ahead in the decision making process.  Your physician, if he is up to date on the latest info per AASLD and guidelines would be able to advise you.

[willbb]

When to treat is always a personal desicion and should always be guided by the advice of a knowledgeable doctor,however the TT aleele"s did very well in an ad hoc part of the Tela trial below...the CT"s and the TT's had the biggest improvement with the new DAA"s added. There is also evidence of this in the Vic (sprint 2 trial)
With Inci you chances given the trial below would be approx. 73% and could even be higher if you achieved a good early response(eRVR)

It would be hard to guess what the results of this current biopsy will be ,however if it has advanced at all from the st 2  I would personally give serious thought to treating ,as the newer drugs may still be up to 5 years out.
Again tho..always a personal desicion and good luck with what you decide...
Will

The tela ad hoc results for Il28B:

The allele distribution was consistent with previous reports about treatment-naive patients, with 49% of patients having the CT allele, 33% the CC allele, and 18% the TT allele, said Dr. Jacobson, chief of the division of gastroenterology and hepatology at New York-Presbyterian Hospital/Weill Cornell Medical Center in New York.
SVR rates among patients with the CC allele were 90% with 12-week telaprevir plus PR, 84% with 8-week telaprevir plus PR, and 64% with PR alone.
The largest improvements in response, however, were observed in patients with the CT and TT alleles – the addition of telaprevir doubled and even tripled SVR rates, Dr. Jacobson said. SVR rates in the CT group reached 71% with 12-week telaprevir plus PR, 57% with 8-week telaprevir plus PR, and 25% with PR alone. SVR rates in the TT group were 73%, 59% and 23%, respectively.
"The impact of 12- and 8-week telaprevir appear to be greater in patients with a T allele than with a CC allele," he said.

http://hepatitiscnewdrugs.blogspot.com/2011/05/hepatitis-ctelaprevir-ups-response.html

[hrsepwrguy]

http://www.medhelp.org/posts/Hepatitis-C/Just-found-out-I-am-TT/show/1622570?controller=posts&action=show&id=#


This has some good insight as to treating with the tri tx and being tt, I don't think it holds as much wt against the tri tx

[nygirl7]

I dont think that the TT status matters as much with the pIs added as it used to when we just did Interferon and Riba. I could be wrong but I think the chances are much better now - especially if you dont have cirrhosis yet

I'm sure one of the smarties will have links for you with the more current info. I had to treat for 72 weeks so I'm pretty sure I was a TT too - but I did SVR so there is hope (we did not have the test back then).