I don't want to bring you down from the good news, but even though becoming UND so quickly is fantastic news, the likelihood of staying UND after being on treatment for only a few weeks is very slim. Incivek is a very powerful drug, and it knocks out the HEP C quickly, but the problem is that without Interferon and Ribavirin to help keep it away, it is very likely that the virus will bounce back and your mom will see a relapse in a month or two.
I agree with advocate. A PCR done at approx. the 12 week mark post any treatment will give a clear picture if any "relapse " has occurred. Very often virus is not detectable again until this time frame.
Having said that ..I have seen stranger things happen when it comes to HCV and how these medications work and I wish you and your mom all the best...
Unless I am missing something, your mother is still on Interferon and Ribavirin, isn't she? They stopped only the Incivek didn't they, but left her on the other 2 drugs?
If your mother has fibrosis stage 4 (cirrhosis), then she would need to do at least 48 weeks, even if she had completed the 12 weeks of Incivek. I don't know much about treating regimens before the triple med therapy was instituted, but I believe most of those people treating on just Interferon and Riba did longer treatments.
I am very happy your mom is UND and I truly hope she stays that way. It may still be a good idea to seek care from a Hepatologist at a large medical center.
Best of luck.
I agree with Pooh. It sounds like they only stopped the Incivek, and as long as she continues the interferon and ribavirin for a full 48 weeks her odds of clearing the virus would be at least as good as what was available a few years ago, and probably much better since the Incivek did get the virus down to UND before they took her off it. My guess would be that her odds would be right inbetween the prior standard treatment and the newer one with Incivek. I'd recommend switching to a good hepatologist for the rest of treatment, to make sure she has a doctor who can properly manage any side effects that arise down the road. There will surely be more things coming up (anemia being the most common serious side effect) and a good doctor can provide rescue drugs in a timely fashion, whereas a poor doctor might wait too long and then have to halt treatment. Congratulations on achieving UND so quickly, and I really hope your mom continues to be UND now. Good luck!
OK. I didn't understand that she is still on Interferon and Ribavirin. If so, then I guess there is an improved chance of staying UND. If not, the chances seem slim to me. Momschampion, can you clarify for us if your mom discontinued all 3 drugs or just Incivek? I am hoping for the best. I guess the next PCR (8 weeks) will tell how things are going.
Thanks for sharing, I have been thinking about her. Good to hears he is UND and I do hope she is still on interferon and riba. Good thoughts for her staying UND. Even if she doesn't at least her liver will get a bit of a rest. Keep us posted.
It sounds as if her mum discontinued the Incivek only
21 Aug 2012 post says:
We called her doc to see if she could continue with treatment and allow the meds a chance to work before making the call to stop treating with Incivek. Her doc called her and told her that based on protocol HE could not tell her to keep taking the medicine... but ... that since she had it there with her he could not stop her if that was what she wanted to do...
☆★★BUT then told her that IF she decided to do that and the rash continued to progress then she ran the risk of having to stop the riba/interferon as well. ★★☆
7 September 2012 (this post) to me implies her mum is still treating with the Peg & Riba (Why discuss the length of treatment if her mother stopped all meds):
"I'll keep ya posted she is supposed to talk to her doc today to clarify some things and discuss whats going to happen with her length of treatment."
On 14 Aug 2012 It looks like her mother's first shot was on (or around) 10 August 2012 (Friday):
"My mom started her Incivek tx this past friday... so she is 5 days in."
05 August 2012:
"Moms liver biopsy was stage 1 not four as i previously thought... apparently we got our wires crossed some."
I could be wrong about all this but if this is the way things are then her mother might still have a chance (with SOC) given she is stage 1 and treatment naive.
It would be helpful to know the exact date of the labs in which the VL was drawn
Sorry guys i was making lunch for my hubby and six kiddos lol...
YES she is still on the peg and riba... She is at week 6 with treatment those blood results were from her 2 week draw. She is waiting on results from a draw done on wednesday last week and has another appt with her doc wed this week i believe.
i believe the treatment plan is six months with the riba and peg. She is still working on seeing about going with the other PI (the Vic) and possibly switching docs...
I understand what the chances are as does she but we remain hopeful and prayerful and confident.
Thanks guys :)
:) Thanks for clearing things up for me since i took a while to post... oh and her pretreatment labs were right before beginning treatment and her viral load at that time was 254,000 and her blood test at 2 weeks into treatment showed UND and we are waiting for results of her 4 week test and she will probably have another draw at her appt on Wed which is her 6 week appt.
i hope i am making sense... :/ i have a tendency to ramble things together in strange ways lol.
Being UND so early is a good sign, although most people then continue Inc for a total of 12 weeks. Therefore I have no idea what the outcome will be.
As I said previously, I know very little about the Hep C Tx with only Interferon and Riba, but I know the people did more than 6 months of Tx. I would be leery of doing only 6 months of Tx since she did only 4.5 days of Incivek. From the information I have read, the standard of care for Genotype 1 (before the third drug was added) was 48 weeks of Interferon and Ribavirin (even with a lower fibrosis stage).
I still would want the opinion and care of a Hepatologist concerning my treatment (if it was me). And if her current doc recommends 24 weeks total, then I definitely would get a second opinion.
As long as she is doing treatment, why not give it the very best possible chance of success. I am doing 48 weeks. If they had told me that the guidelines said to do 72 or 84 weeks, I would have done 72 or 84 weeks. I sure would not want to have to do this again just because I did shorter than recommended treatment.
I really hope your mom does well and gets rid of this virus.
:) Pooh I agree whole heartedly... i cant recall if her doc is a hepatologist or gastro (pretty sure hepat) .... but in my opinion quite the frickin idiot... i mean seriously he called her to tell her she was UND and yet he says wow that was a powerful drug you were on... which protease inhibitor were you taking?! Ummm excuse me but as her doctor who is heading her treatment YOU SHOULD KNOW THAT ALREADY! and if you can't recall LOOK AT HER CHART! Not only that but combined with the fact that he took 4 days to get her meds for the rash, he stopped her incivek treatment without seeing her physically but based on photos from a phone camera AND before she even had he meds to take to try to control it, he doesn't seem to know which end is up in any situation.... I am really pushing for mom to change docs... and she has already agreed that this is beyond ridiculous with him.
I will definitely be speaking with her about length of treatment regardless of what this quackpot says she should do.
Like i said... I know that there is a chance... even a high one ... that she could end up with a "relapse" of the disease.... especially if they shorten treatment. But right now UND is UND and it is a blessing even if it doesn't last in the long run. :) Staying positive is key for us. It gives the strength to continue forward and to push for what we feel is best for her treatment wise.
((hugs)) and thanks :)