Status update on completed 48 Wk Victrelis treatment

[FaLaLa137]

Greetings!

I just thought I would give you all a status update as my treatment was slightly unique.  I did not receive a full log drop in my viral count for my first 4 week lead in to Victrelis, because of this and my slight detection at 8 weeks, I was forced to do a full 48 weeks of treatment including the Victrelis/Riba and Peg intron until the 48th week because of not having a full log drop (treatment naive and Stage 2-3).  I have now finished the 48 weeks as of the 30th (yay!) and have been off the meds for 4 days now.  I haven't done any of my labs yet for SVR but will do the next one in February and of course again in 6 months.  

I just wanted to let people know that it is doable (48 weeks of treatment) and that so far my lab results have been favorable even though I had less than a log drop and viral detection at 8 weeks.  I got through it without any rescue drugs even though my anemia indicator dipped to the 7s at one point but maintained around the 9s.  My side effects were fairly minimal and I continued to work full time and take care of my family (including 2 small children).  I'm hoping and praying that the last year was worth the tiredness and crankiness and that my family won't hold it against me in the future. :)

So as you can see the treatment is doable and yes people have different reactions and side effects but I feel I was one of the lucky ones and faired fairly well.  And I wanted to share this with others who are considering the treatment but are nervous regarding how it will affect their lives.  I will update you all on my labs as soon as I receive them as I'm sure you are all as anxious as I am. :)

Happy New Year to all and here's to a HEP C free 2013 and beyond!!!!!!!

[Bovary73]

I just have no words in English (my bad English..) to describe how I feel knowing about your 48 weeks journey...! Respect! A lot of respect! And people like you made me feel that this was doable, like you say. You are a very good example for people to follow! You encourage by taking this treatment for 48 weeks!! Wow!
Like you, I was also on Victrelis. And like you, I have small kids. There is a challenge in that...but you made it! I'm so sure you will have your SVR! And I hope you recover fast.

Thank you for being around through my treatment, I was lucky to have people like you hanging around in here ;)

Good luck with your life, take care of yourself.

[BoceprevirGal]

  Congrats on completing your long Tx, and being Und at one week post EOT.  This result is just fine, being one week late. It shows that you were Und at EOT, so all is well :)

[FaLaLa137]

Hi Ray,

Yes, our situation is unique and made me nervous to continue the treatment as we only have around a 30% chance of SVR.  I'm really hoping I am one of those lucky ones, to go through a year of treatment and not reach SVR will be devastating......

I did have some side effects, red spots, bitter taste in my mouth, drymouth, dry skin, dizziness, crankiness and the worse being my hair falling out (this is hard when you have long blonde hair and you are a little vain about it).  But really nothing that made me consider quitting or giving up.  I felt like they were more small nuances than anything else.  I did loose some weight because the bitter taste made food taste gross and got down to 106 lbs, when my normal weight hovers around 120.  But I have already started gaining some of it back....now if only my hair would grow back in quickly!

[FaLaLa137]

In regards to the hgb at 7, I did have a couple close calls with fainting (at disneyland with my kids) and I did have to rest quite a bit.  I almost went on some rescue drugs and had the conversation with my DR. but we did another test because I was feeling better and saw that it had jumped back up in the 9s.

Even yelling at my kids caused me to get dizzy.  Lucky for me, my job is mostly a desk one and on the computer, so I didn't exert a lot of physical energy when I was working.  I also had a ton of help from my husband who got them ready in the morning and off to school and helped with laundry, cooking etc.

[FaLaLa137]

I did the EOT testing a week after and I was still undetected, so that is good news, right?  Does anyone know when my next tests should be?  I know I have to do a 6 month one, any more before that?  I like my Dr, but he is busy and I have to keep on him a little bit.....

[frijole]

falala - congratulations of completion. I cannot imagine how you worked full time and had 2 small children and had hgb as low as 7 with no resuce drugs and say you had no side effects.  Truly you are superwoman.

I hope this has worked for you, even without the UND at 8 and without the 2-log drop after the lead in.  

I agree with the other members that you need the EOT testing

[PJ1966]

I'm a relapser from my first treatment so I know the importance of EOT viral load for my second treatment.  I'd go have blood done asap.

[can-do-man]

I agree 100% with pooh. Had it not been that I had an EOT viral load my first treatment I would not have been allowed in the Boceprevir trial as one needed to know their status at EOT..... While one at 45 weeks would be a very good sign you were still UND at EOT it won't take the place of a 48 week one........ Of course when you get your SVR none of it will matter. Wishing you the best.

[Advocate1955]

Congrats on finishing 48 weeks of treatment. Hopefully your doc will run an EOT PCR for you.  Best wishes for SVR!
Advocate1955

[Idyllic]

Congrats on finishing treatment. I just finished 48 weeks as well and I cannot begin to imagine doing this with small children and working full-time. My hat is truly off to you.

Do you mean your last VL was on 12/10 (week 45)? If so it was good of your doctor to run one at that point since I imagine at that stage it must have been an incredible morale booster. I had one at week 44 myself since I was getting a little anxious and wondering if all this was even still working.

Still, Pooh is right. The Victrelis web site clearly points out the treatment protocol (it is the same for previous patients and treatment naive):

"HCV-RNA levels should be monitored at Treatment Weeks 4, 8, 12, and 24, at the end of treatment, during treatment follow-up, and for other time points as clinically.."
http://www.victrelis.com/boceprevir/victrelis/hcp/treatment-algorithm/treatment-naive/

Don't let anyone discount the importance of this since it is your peace of mind and (possible) future reference that is at stake. You would not believe how many people on here who for one reason or another look back and regret not having PCRs done at the proper intervals.

[bbj2856]

Good luck and so proud of you 48 weeks is a long time praying you get good labs and still und > keep the faith and good luck .
bbj

[Woodpeker]

Fatlala137,
Glad to hear a non perfect treatment has gone so well. I also did not get a 1log drop at week4 and am going 48 weeks with Victrellis all the way to the end . I am starting week 36 tomorrow . Every thing has gone fairly well with no dose reductions . Hemo 11 to 12.5 and platelets 85 to 101 through tx   I will be anxiously watching for your SVR posting.!!!!!! Best wishes Ray

[pooh55811]

The EOT labs are important because, if the virus is detectable in the coming months, then you will know what to call your response to Tx. But you need the end of treatment VL in order to know what your response to Tx.

If you are UND at the end of treatment (for you 48 weeks) and you stay UND forever, then no, it technically does not matter.

But, if you are UND at the end of treatment (for you 48 weeks) and you show virus in Feb., or March, or any time after EOT then it would be classified as a Relapse. So after dropping to UND levels during TX and at EOT and then show detectable virus AFTER the EOT, then it is a Relapse.

However, if you have become UND at any point during treatment and then have Detectable virus at any time after that (while still on Tx) or at the end of treatment (the 48 week point), then it is classified as a Viral Breakthrough.

Knowing exactly which type of response you had to treatment and knowing the correct term for that response is important and can potentially affect aspects of any future treatment uch as length of treatment (if for some reason you do not attain SVR).

Knowing the EOT response can also affect a person's ability to get into studies.  

http://www.vrtx.com/assets/pdfs/VRTXHCVTreatmentResponse.pdf

Here's wishing you SVR.

[FaLaLa137]

Hello Pooh55811,

My last lab was on 12/10 and when I saw my doctor on 12/7 he gave me lab requests for the 12/10 and another for February.  He didn't say anything about more labs when I ended treatment.  It's been 4 days since I finished, but I could probably get them done tomorrow using the lab request for February (he only hand wrote timing on top and I could use it at any time).  I didn't realize it was so important, I will take care of it tomorrow and let you know how they come out, thank you.

BTW, do you know why the end of treatment labs are important?   I think I missed that along the way.....

[pooh55811]

Congratulations on finishing 48 weeks of Tx! It is great to hear from you and to know you are doing well. I know you had some tough times with that low hemoglobin.

Did you have a VL done at 48 weeks, on Dec. 30th? That end of treatment VL is very important. If you had one done, do you have those results yet? Hoping that you had an end of treatment and that it is UND.