Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> On Treatment -> Waiting, waiting..... Oh yeah, still WAITING!
Post Info TOPIC: Waiting, waiting..... Oh yeah, still WAITING!
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Waiting, waiting..... Oh yeah, still WAITING!
Permalink  
 

Hi Hillary, I`ve been following this conversation and to be honest my opinion is that you`d be well advised to see another doctor and get a 2nd opinion before you go any further.  I`m afraid your doctor doesn`t appear to be very knowledgeable about the correct treatment protocols for victrelis and I find it quite shocking that she is planning to put your through the ordeal of a 48 week stretch of treatment when it`s most unlikely to be necessary.  The 4 week lead-in is normally used to determine how you respond to interferon, not the length of treatment you`ll need. Your 4 week vl result is great and I`d be very surprised if you weren`t UND at week 8! 

You could stay with this doctor but you`d have to check out what she is telling you all the way through and that could well cause you quite a lot of extra stress as you go along, which is one thing you definitely don`t need!  At the end of the day it has to be your decision, but personally I would be quite worried about the ability of your doctor to give you the right advice. 

Best of luck anyway, keep us posted!  And congrats on your 4 wk result!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
HilLaryOus


Member

Status: Offline
Posts: 29
Date:
Permalink  
 

No you're right! I enjoy your comments as well bc you're very knowledgable and I'm really not with all this. Its hard for me to say what I feel already, and this dr that should know all these things is making me feel like I'm losing my mind a little. Well I just wanna listen to what she tells me but like a few have pointed out, these drs do make mistakes. And I'm all for not having to do unnecessary treatment if the 28 weeks is sufficient. So seeking a second opinion I'm not sure what I should do? Just find another dr? Or push this one to check more into it? 



__________________

24 years old, diagnosed genotype 1 2012. Started triple drug therapy with Victrelis September 06,2013 started with VL over 8mil+  4th week labs: vl detected but <43.. started Victrelis 10/09/2013! Week 8 UNDETECTED! >>18 shots to go! 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Hillary,

There is NO new treatment protocol for Victrelis. If your posts are correct, your doctor has been mistaken in 4 answers. I would ask her if she had ever used Victrelis before.

It is appalling that at age 24, you should be subjected to an unnecessary extra 20 weeks of treatment with these potentially damaging drugs. The decision whether to get a second opinion is yours, and I will refrain from any further comments. Best of luck!



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

I understand your thought process and agree that your doctor should be the know all, see all, but ... I've got a very good doctor too, Board certified, multi faceted, etc., but he has made some mistakes over the course of my treatment. Big enough for me to question the thought that they can do no wrong. They put their pants on the same way we do, have bad days like we do and make mistakes, like we do. I haven't heard of her new way of treatment and would ask for that source before believing it without further question. I'm taking the same treatment as you are now and will end my treatment on week 28, week 24 of Victrelis. I recently checked with Merck, who makes Victrelis, and they didn't mention anything about a 4 week VL being a determining factor between the 24 and 48 week course of treatment. I would recommend a second opinion in your case. Best of luck!



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
HilLaryOus


Member

Status: Offline
Posts: 29
Date:
Permalink  
 

So- I pointed out to my doc that the book that came with the Victrelis packet said at week 8 if I was undetected my treatment may be just 28 weeks... Also that from research I've seen this too.. But that she's the doc of course and that I would like to know if I had a possible chance of the shorter treatment or if I needed to just get this 48 weeks stuck in my head. We were on the phone and she's just told me my good results so I'm not sure I understood her answer.. She said that the newer way they treat now doesn't follow that book. Where the deciding test to continue is at 8 weeks? She said that they decide after the 4th week lab. That all I needed was at least a 1 log drop and ill start Victrelis and go for 48 weeks. So I had more than that which is good but that's it. That's the length. I've questioned her about this already 3 times and she really is a great doctor I feel like she knows more about all this than me so Im just gonna go with her answer this time. Thanks everyone for the support! 



__________________

24 years old, diagnosed genotype 1 2012. Started triple drug therapy with Victrelis September 06,2013 started with VL over 8mil+  4th week labs: vl detected but <43.. started Victrelis 10/09/2013! Week 8 UNDETECTED! >>18 shots to go! 
Biggyb


Guru

Status: Offline
Posts: 820
Date:
Permalink  
 

Great Job Hillary !! I was also und at week 8, Victrelis is a very powerful drug. I got a shake up going into week 36 when the NP said i could stop at week 36. But then the doc said oh no, cirrosis people do the whole 48..That was a bummer, but oh well..It is what it is.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
TeddyTrout


Senior Member

Status: Offline
Posts: 118
Date:
Permalink  
 

Good luck with your treatment with the Victrelis.. Those are good clearance figures. If your doctor says you have to do 48 weeks, then that is what you need to do under his/her medical direction but do be proactive with your treatment. If in doubt try and get a second professional opinion There are a lot of different advices you will come across here on this board and you need to just be looking out for your self. Best of luck to you.  Regardless of how many weeks you end up doing, the best of luck to you.  



__________________

Don't sweat the small stuff, it will only give you hair loss.
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Hillary,

That's a great result from the leadin. You'll be Undet. by week 8, and will only have to do 28 weeks treatment. For your information Detected but <43,  is <log 1.4, not <1.   Log 1 =10. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Terry


Senior Member

Status: Offline
Posts: 124
Date:
Permalink  
 

Good for you Hillary keep up the good work!!

 



__________________

Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!
Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

I agree with that your treatment length should be 28 weeks (w/24 wk. Vic) assuming all goes as hoped in the near future. Your week 08 VL should be your (RGT) determination and your week 12 VL determines whether you continue or not.   I was just discussing a similar (timing) problem on another thread here. My doctor made a calendar error on my end of treatment date. It just goes to show you that you MUST stay involved in your care and confirm as much as you possibly can. Doctors offices do make mistakes and we often discover those errors ourselves. This forum has not only helped me understand this disease, but how to handle treatment side effects, as well as personal care recommendations while on treatment. You will read in many instances, like mine, it is very likely responsible for the success of my treatment. Good luck and keep on em'!!!



-- Edited by Tig56 on Friday 11th of October 2013 05:21:26 AM

__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
HilLaryOus


Member

Status: Offline
Posts: 29
Date:
Permalink  
 

So- my viral load went all the way down to still positive but unreadable! She says that's less than 43? Well the nurse told me this.. My doc left a message really early yesterday and Said my results were great and to start Victrelis! But I called back and the nurse told me this.. i was still shocked by that much of a drop? Kinda didn't believe it and I can't see the results myself, so I called today and spoke to my doc she did tell me my log WAS at 6.9 and now it's <1! biggrin



-- Edited by HilLaryOus on Friday 11th of October 2013 02:21:19 AM

__________________

24 years old, diagnosed genotype 1 2012. Started triple drug therapy with Victrelis September 06,2013 started with VL over 8mil+  4th week labs: vl detected but <43.. started Victrelis 10/09/2013! Week 8 UNDETECTED! >>18 shots to go! 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Hillary,

I don't know where your Doctor is getting her information. The 'normal' course of triple Rx with Victrelis is 28 weeks total, and that includes the 24 weeks of Victrelis.  Only patients with advanced liver damage get to do the wonderful 48 weeks!  At your age you will have little, if any, liver fibrosis and your LFT's look good. Patients with a slow response may have to do 48 weeks, but I'm willing to bet your 8 week VL will be Undetected.  Your Hb is dropping along with your RBC's, so the Ribavirin is working.  Goodness knows what she's talking about re your Viral Load.  The VL in log units is just an old-fashioned way of saying the same number.  You really should have started Victrelis at the end of 4 weeks, regardless of the VL.  Have a read of the following article for Rx -naive patients. Cheers.

http://www.hepctrust.org.uk/Treatment/New+Treatments/Boceprevir+%28Victrelis%C2%AE%29



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
HilLaryOus


Member

Status: Offline
Posts: 29
Date:
Permalink  
 

Ps: my liver functions are lower than they have ever been! Since I started treatment and was even diagnosed... That MUST BE GOOD RIGHT?!



Attachments
__________________

24 years old, diagnosed genotype 1 2012. Started triple drug therapy with Victrelis September 06,2013 started with VL over 8mil+  4th week labs: vl detected but <43.. started Victrelis 10/09/2013! Week 8 UNDETECTED! >>18 shots to go! 
HilLaryOus


Member

Status: Offline
Posts: 29
Date:
Permalink  
 

confuse Well my 4th week labs were drawn on Sunday- had a Dr apt today to decide on Victrelis or end treatment but the labs still weren't done? So I'm still waiting.. I have Victrelis in my fridge I can't seem to think about much else.. Oh ya except that my dr told me in the beginning that I had About a six month ride thru treatment- well we can call it "sentence"  actually.  But in a rare moment of these last few weeks ( since said sentence) my brain snapped me in to reality and said "HEY 48 WEEKS IS MORE THAN SIX MONTHS DUMMY!" So the last two weeks I've been think hey well maybe my dr knows it works in six mo Maybe I'm lucky! So I asked her about it today and poor thing she goes " well ya you don't need more than six mo, oh wait well you're gonna take victrelis right? So yes Hillary, it's 48 weeks. "   so really I knew this but convinced myself that I was lucky.. But nope- heart drops to my stomach.. I got the might as well call it year sentence.. So I'm bummed. I can handle it. I mean I guess I have to right?! My viral load a couple mo before starting to was all the way at 8 million. She (my wise Doc) said that doesn't really Matter?? The log is more important? I really do love my doc she I amazing and I don't mean to discredit her at all. She answers every single question stays way over my allotted time for my apts if needEd, calls after hours- and even gave me her cell# if I ever have an emergency. So I'm anxious. I can't stop thinking about a whole year. Victrelis in my fridge that hopefully I NEED. My hair is falling out and I just want to not stress  all this so much! My bf talks about doing something and I dread it. No matter the day or the task, bc well I just don't know how I will feel on that day. poor guy, I feel bad for me but also wonder what he's going thru- So I guess I'll just hang out here, and keep Waiting! Well one good thing at least out of 48 shot I've already had 5! Just 43 left to go! Hope all you great people are having a good night!



-- Edited by HilLaryOus on Wednesday 9th of October 2013 06:04:17 AM



-- Edited by HilLaryOus on Wednesday 9th of October 2013 06:05:01 AM



-- Edited by HilLaryOus on Wednesday 9th of October 2013 06:07:33 AM

__________________

24 years old, diagnosed genotype 1 2012. Started triple drug therapy with Victrelis September 06,2013 started with VL over 8mil+  4th week labs: vl detected but <43.. started Victrelis 10/09/2013! Week 8 UNDETECTED! >>18 shots to go! 
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> On Treatment -> Waiting, waiting..... Oh yeah, still WAITING!
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.