D 8-octor refusing to extend treatment?

[ChrisDDD]

Hi, all.  Today I completed week 9 of Sovaldi & Olysio.  I started with VL 3.88 million, 2-week was 531, 4-week was 122.  Waiting on labs drawn at 8-week mark last week.

I am stunned that my doctor has said I cannot extend treatment beyond the 12 weeks, so if I haven't cleared by EOT, too bad?  They told me when I started that I could substitute ledipasvir for either Sovaldi or Olysio without a lapse in treatment if I still tested positive at EOT, or I could stay on Sovaldi & Olysio and add Ribavirin.  I e-mailed my doctors 8/29 asking these questions, and just got the reply today from the NP that I would not be able to continue Sovaldi & Olysio beyond 12 weeks because the FDA hasn't approved that.  WHAT???

So I'm just to be left flapping in the breeze as my body succumbs to this virus?  I'm supposedly under the care of one of the best hepatologists in the country if not the world.  I don't think I will clear and if I do, I'll relapse.  I'm a three-time chronic nonresponder.  It will be difficult for me to get cured, but I'm willing to do whatever it takes.  After 9 years of waiting to get into some kind of treatment, I can't believe they're just going to abandon me like this.  I see other people on 24-week regimens of Sovaldi & Olysio.  My EOT is in 3 weeks.  Please help me.  Thanks.

[Livelife777]

You will SVR if not now, then the next time.  Just because Tx didn't work in the past, doesn't mean your future is forever doomed.
Keep the faith!
...Kim

[hepcandme]

Chris

I was undetected at EOT on S/O until I retested at 4 weeks post treatment and the virus had returned (I am cirrhotic, 1B, treatment naive before the S/O)

I did ask almost immediately whether we should have done 24 weeks but my doc said (paraphrasing here) that they were continuing to discover what works best

Read, you are part of our little group of guinea pigs so, we don't really know

So, I'm all about getting it done with this next bout of "miracle" drugs and will be interested in hearing what strategies relapsers and non responders choose next month

Perhaps we can start a new thread then ala Nan's post to see what regimens people are on, for how long and whether or not they reach SVR

~ Linda

[patra_]

C:  Another med combo in the pipeline is not a single pill, but 2 - Sovaldi and the new BMS daclatasvir (I don't kmow what it's brand name will be here - in Europe it is Daklinza).  it is the daclatasvir is up for FDA consideration in November.  This 2 pill combo has been tested on Gts 1, 2, 3, and I think 4, but not really sure about that last one.  These trials have treatment experienced (null responders and relapsers), Gt 3s (the hardest to cure) and cirrothics, with really high percentages of SVR in all areas.

AbbeV is also working a a new 1 pill combo, I believe, which I have read (on Fierce BioTech - daily news letter) was on schedule to got to FDA in  Decembr.  I don't know much about this combo or which genotypes the trials  
are focusing on.

Someone covered the Sol/Led earlier in this thread.  Hope this helps a little.

[brenda548]

Yes, do get a firm, clear response from your drs as to what they are planning.  In case the better interpretation is not correct, you have limited time to obtain other arrangements.  If you need Gilead and Janssen to supply  the meds, they do so only with a dr. and the paperwork can be time-consuming and onerous for the dr team.

Brenda

[mike716]

i wouldn't assume anything if I were you. Try to get a firm commitment from your MDs that they are going to either continue S+O if you were not UND at 8 weeks, or else switch you to the newly approved S+L.

If you can't get any satisfaction on this issue from your MDs, I would call Gilead and Janssen patient assistance and discuss it with them.

As I understand it (and I could be mistaken), even if you are UND at 12-week EOT, if you were not UND at week 8 you need another 4 weeks of Tx.

But this is a big question for everyone on S+O, and it is not being addressed by MDs, the insurers, or the pharmas.

M.

[nan535]

Hope is so important, isn't it?  The new combo pill that is to be approved October 10 is Sovaldi/Ledipasvir.  It's for GT 1a patients but there are trials going on right for other geno types.  The cure rates are the best yet.

We all need a little hope right now!

Nan

[Dee1956]

Hi Chris, I am sorry to hear that you have to stop the tx.
I tried to find information about the new tx coming out hopefully next month.  Here are a few people discussing it.
My best to you
Dee
http://www.medhelp.org/posts/Hepatitis-C/Hep-C-is-there-new-medcomming-this-fall-2014/show/2278945

[Jillymanily]

What are they?  I failed the Sovaldi and just need a little hope right now.

Thanks

[ChrisDDD]

Please ignore this post.  I couldn't figure out how to delete it.  I was reassured by the Pharmacy that there are new drugs getting FDA approval next month that will be better than 24 weeks of Sovaldi & Olysio, so that's probably what my doctors are evaluating at this point.  At least I hope so.

You guys are the best.  I hope all of us go on to clear and stay clear.

Chris