Victrellis/Boceprevir Support Group

[sueimpe]

Good to hear! I'm keeping the good thought that this is gonna be the norm for you and that it won't affect your work (as well as the rest of your life of course!).

I just read the IDEAL trial that compared Pegintron (alpha 2 b) to Pegasys (alpha 2 a). It boils down to dosing per weight, and Pegasys has that option for adjusting doses. Also Pegintron is absorbed quicker so you feel crappier for the first few days, then it mellows out. Pegasys is absorbed evenly throughout the week, so you feel a little less crappy, but for the whole week. Another mystery solved!

Impy

[hangingin]

Day 5, still alive!  Looks like the sx are coming along now, been a little nauseous all day, not sick, just enough to make you know its there.  If it stays this good, I'll be thrilled!  Now, get 2 week labs next week, we;ll see how the beast is liking it.(not, I hope!)
Good luck to all, happy week to you!
PS - has anyone else started tx yet with Victrellis?  Just wonder if my experience is normal.   Just doing SOC right now, 3 more weeks I add the Victrellis to the cocktail, then we'll see where that takes me.

[hangingin]

Hello my friends!
Shot two onboard Friday night, riba dynamite twice daily, still almost no significant symptoms, thank God for that.  However, the fatigue is returning big time, and i have noticed a new issue that was not much of one on round one. I seem to be getting a little irritable and more intolerant of discord and confusion, and noisy places.  I had lots of family and kids in my house yesterday, and I just wanted to go to my room and close the door.  (and at one point I did)I am generally very sociable and love our family and friends......however, when it becomes confusion and pandemonium, kids screaming, people everywhere, my nerves get the best of me.  Am I a candiate for AD's this round?  I have never taken anything like that in my life, not sure if I need to go there.  any advice greatly appreciated.   Good day to everyone!!

[banarep]

I had times during my last treatment where noise, etc really bothered me.  Needing to be in quiet is not an unknown side effect.  I did not do AD's, just found a nice place to go "be alone" and I took my ipod with me and listened to some jazz or light rock......

[alice]

Hi Hangin!

So glad you're not having many side effects! 

I get pretty wound up sometimes on tx, too. I find the riba makes me kinda cranky sometimes but the interferon makes me quite anxious. That tension and anxiety is pretty common. Might not be time for ADs yet but increased tension/anxiety is a symptom I would tell my doctor about just so they can track any development of new probs... I'm just careful about stuff like this. I see my shrink tomorrow for my monthly check in and will tell him about my increased anxiety too, even tho I have it pretty under control for now. I get super wound up sometimes and avoid social situations completely-- have even left full shopping carts in grocery stores when i can't stand all the people and noise. (sorry shelf stockers!  )

Anyway, I think a good rule of thumb is to let your doc know, and when situations like that start to interfere with normal functioning, then it's time to discuss the possibility of ADS or other coping strategies-- but sounds like you did exactly what you needed to do!

take care and keep hanging in there!
shalice

[hangingin]

Hello!
Shot #3 on board last night!  Two weeks till I start the Victrellis, then its game on!  So far, SOC, Pegasys and Riba dynamite have not given me much trouble, starting to get that crazy itch again that i had last time with SOC.  Other than that, and a little anxiety, all is quiet on the sx scene, thankful for that.
Any other Victrellis folks underway, anyone started on the third med yet?  I am anxious to hear from someone who is there to get an idea of what to expect.  Have a great weekend, all!   God bless!

[cubgirl]

My doc told me the ONLY way the liver's condition can be determined is via a biopsy.  Have you ever had a liver biopsy?  May you should while you're waiting for TX.  They're not that bad; I've had 2.

[hangingin]

Hi cubgirl, I had biopsy last year, my liver is stage 3 bridging, fully compensated.  I am blessed in that regard.   I am looking forward to adding the Victrellis to the SOC to get this game going full speed ahead.  Best of luck to you also.

[cubgirl]

What does the term fully compensated mean?

[DougV]

It just means the liver though damaged is still able to function well.

Doug

[sueimpe]

Hi fellow Bocepribuds
Just checking in. Waiting for new appointment on August 26. If I don't start then, I'm afraid to even guess when it will be. Hope everyone is doing OK. I have a feeling that there may be quite a few dead dragons laying around.

I'll check it again soon.

Love you all,
Sueimpe

[hangingin]

Good morning!  Well, I've been bragging about the lack of sides, looks like the poison level is getting back up there now. LOL   Fatigue has run over me like a big Mack truck this week. I do great till about 430-5PM, then its downhill fast.  I'm in the middle of week 3, i take shot 4 this Friday, then next Friday I start the Victrellis, then I guess I'll learn the 'rest of the story'.  O well, this too shall pass.
Best wishes too all my friends, wishing everyone SVR all around.  God bless!  Keep the faith.

PS Impy, hoping your meds come through real soon so you can get in the game.  i know you are very anxious, it will come.

[Imafighter]

Hi everyone!  I'm new to this board.  I am in my 4th week of treatment with riba and pegasys shots.  So far i have been handling the riba ok as long as i eat when I take it.  The pegasys shots are a different story...I do the shot on friday evenings and it takes about 3 days for me to feel somewhat "normal" again.  I start the victrelis this friday and i'm not looking forward to it!  I know that it's necessary, but adding it on top of the other two makes me apprehensive.  I am a teacher (high school learning support English) and I don't know if I will be able to stand up infront of a classroom after I start this med.  You need patience and a clear head to do this job; which i don't have much of these days!  Well, we'll see how it goes.  I thought the worst before starting these treatments and I have been pleasantly surprised that it hasn't been the nightmare i was told it could be.  Maybe it will be the same way with the victrellis;  or this is the calm before the storm!  Will keep you posted! 

[hangingin]

Hello Imafighter, nice to meet you.  Sorry to hear you are experiencing those sides already.  We all get them in varying degrees. I am in week three of Pegasys/riba, shot 4 this Friday, than next Friday I will start the Victrellis. So I will be right there with you.  Sides this time around were almost non existent until this week. I am having major headaches and some dizziness this week, but manageable. I wish i could tell you what to expect from the 3rd med, but have not experienced it.  I too am a little concerned about how i will handle it, as i also work, long hours, 6 days a week.  We'll get through this together, there are lots of folks on this site who are either ahead or behind where you are now.  Tons of helpful info and advice from those who have been around for awhile.  I know of several others who will be starting this SOC Victrellis regimen soon, so we'll have lots of company.
Welcome again, thanks for you input, wishing you and everyone SVR.  God bless.

[hangingin]

Two week labs just received:
Glucose 111, HIGH
BUN/creatinine ratio  24, HIGH
Bilirubin, Total      1.4  HIGH
CBC with differential/Platelets
WBC     2.7  LOW
RBC       4.06  LOW
Hemoglobin      11.9    LOW
Hematocrit         35.6   LOW
---------------------  page two
RDW      15.6    HIGH
Platelets    95 - ALERT!!!(that's what the lab report says)  Is that bad?
Platelets appear clumped.  WTH??
Neutrophils           35       LOW
Lymphs                  56  HIGH
Neutrophils(absolute)       0.9     LOW
AST   23
ALT    25
Vl dropped from 4.5million to 543520 on SOC only for 2 weeks

Anybody already on the Victrellis having these problems?  I do not start that until next weekend, this is two weeks of SOC alone.  Looks like almost everything is jacked up after only 2 weeks on SOC, what is going to happen when I start the Victrellis next weekend?  I did not have this kind of labs last time after 6 months of SOC.
Wheeeeeee!