9 Days left on Incivek but struggling

[Cyn621]

I have 9 days left on Incivek but honestly, I feel like I am dying a slow death.  I no longer go to work and I can barely breath.  My doctor is trying to get me to the end of the 9 days without having to give me Neupogen.  My WBC is 2.0 and my Platelet Count is 109.  


I am seriously considering just ending this now and taking my chances that the Incivek did it's job.  At 4 weeks I was undetectable.  This is my first time treating. I am genotype 1.  Had a liver bioposy at the start stage 1, grade 1.  Viral load was 6.2mil.  All liver tests AST/ALT in normal range  I keep thinking, what difference can 9 lousy days make and I am so sick at this point, I feel like I need to save myself.  HELP!

[working dog]

i know i might take some trouble here but before you hurt yourself maybe stop...it makes almost no difference...everyone is different...i'll bet you see incivek for 10 weeks pretty normal soon...don't hurt yourself....have a nice incivek night...billy

[lynda607]

Work with your doctor and don't take the advice of a non professional about stopping early.   Neupogen isn't going to make you feel better.  Nine days is nothing to what you have already endured.  Stay with the program if all possible, it can only increase your chance of SVR.   Vertex didn't come up with a 12 wk protocol because it made almost no difference.  Once you stop the Incivek you will feel better.

Nothing is guaranteed with any treatment and if you relapse you would always wonder did that nine days make a difference.

Good Luck

[can-do-man]

I agree with lynda, why take the risk after this long? Work with your doctor. Hang in there.

Working dog........it makes almost no difference...everyone is different...i'll bet you see incivek for 10 weeks pretty normal soon...

Where do come up with this crap? Just how many trials have you done???
Please point me to the studys...... BTW are you SVR?

[willbb]

I agree with the two folks above...Never stop a very important drug in the mix  without the advice of a knowledgeable doctor..
Good luck
Will

[suezeeque]

Is Incivek responsible for low platelets?  My understanding is that it's the Ribavirin doing that...  Mine are low and I'm not on Incivek but a trial with another medication.

I share the opinion of two of the above.  Why stop now?  With so few days left to go.  You got this far, right?  That means you already know you're strong enough.  :)

[ann61]

I've got 2.5 days left on incivek and also feel like I'm dying.  I will make it, but I finally took this week off from work at doc's request....something I swore I wouldn't do.  Once again I am running a daily fever.  The last time this happened, my wbc was down to 1.2.  Doc started me on neupogen and I felt like a new person.....much, much better in about 24 hours.  I had a blood culture done today to see if I might have developed a viral infection and also a cbc to check wbc.  For me I have come to far to turn back.  The protocol is 12 weeks and I will not stop.  If you can possible manage to hang it there, I urge you to do it.  I know it's not easy and in fact may be the hardest thing I've ever done (and I've treated twice before).  I just feel blessed to have the opportunity and strong chance of whipping this thing.

I will keep you in my prayers.  Good luck.

[lynda607]

Cyn621

Telling someone to stop Incivek early because it will make no difference is a classic example to medical armchair advice.  We know not everyone is cut out to withstand the 12 wks of Incivek, working dog was one of them but you don't have to be.  Not sure he'll be able to complete 48 weeks either but many people can and do get through it even when they think they're drawing their last breath.  No one said it was easy, you have to dig deep and make the full commitment to ensure you have done everything possible to attain SVR.  Hindsight isn't always a good thing.  

Suezeeque:
Incivek can effect platelets but it's the interferon that lowers the hammer on platelets, not the ribavirin.  Ribavirin is responsible for causing hemolytic anemia.  

[Gerbils]

Incivek can cause some side effects that are difficult. I truly feel for you and understand where you are coming from and why you might want to stop. I have been off of it for about six weeks and am still just beginning to realize some of the symptoms I had. That sounds funny but when you take something like peg+riba+incivek all at once and then discontinue one of them it is hard to know what is causing a side effect and what is a product of being ill for a while. I understand you not being able to work. One of the weird things about this treatment to me is the description of it being extremely difficult and requiring intense commitment and the insistance that people work through this. If you don't feel like you are up to going in to work, that is your call and no one elses- I am proud of you for staying home and taking care of yourself. It personally irritates me that doctors tell you how bad this treatment is and then turn around and tell you need to keep working through it. This is ridiculous. Sorry, I went off on a tangient- I will write more later. Back to your current situation...

I agree with every one in general. You should attempt to stick with it if you can. That said, I am very concerned about you and tend to trust your feelings. You said you feel like you need to save yourself. If you are that desperate; do what you need to do and I know that I and everyone here will support you. I really believed I could get through the 12 weeks but had to stop early due to the rash. My genotype, viral load, and liver biopsy were very similar to yours. I was also und at 4 weeks, and und at 12 in spite of stopping incivek at 9.5 weeks. My Alt/Ast have been normal since week 2. I had a blood test yesterday (16 weeks) and they will check the viral load again. I will let everyone know how it comes out. I have since also had to reduce peg on dr's advice.

If you feel like you are dying tell your doctor how you feel. I am not enouraging you to stop but to take care of yourself and I tend to trust how you say you feel. You are the only one who knows that. If you need to stop then I think your chances of being ok when you are this far along are not that bed. Hang in there, honey. Do what you need to do. We are here for you.

[working dog]

you never did incivek did you???? sorry but i've read enough posts here to know when someone isn't kidding....i guess if someone dies from your advice your on a computer.you'll never know...i don't get it...i hope you cure one day but maybe listen and you'll have better chances next time...and i still think if you feel like your dying watch who you listen too...chances are i could have done the last 5 days but when i feel in the driveway and really almost hit my head very hard i thought of how stupid i would feel had i listened to folks like linda....good luck cyn...billy

[willbb]

by lynda:
   Work with your doctor and don't take the advice of a non professional about stopping early.
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This seems like excellent advice IMO

[lynda607]

You don't encourage people to stop any medication.  Unlike you, we try to encourage people to keep going but most importantly consult with their doctor before stopping or adjusting dosage.  

It's unfortunate you fell down and almost hit your head but most people don't have the degree of trauma you seem to have experienced.  I'm not calling you stupid but I think the way you handled your anemia issues initially was irresponsible just like I think encouraging someone to stop Incivek early is irresponsible.  I'm not the only one who doesn't get you or your advice working dog and if I listen to your advice I'm sure my chances of SVR with triple will be greatly diminished.

[JAY0914]

9 more days is a pc of cake....im in week 22 of tx...did iINK and it was rough from week 4 to week 12... after i stopped the  INC  i felt soooo much better....hang in there...give it 100%....and you will succeed...would hate to have quit early and fail and always wonder!   i got 2 more darts to throw  wooohooo

[flcyclist]

No one knows what you really feel like, so all we can do is provide you encouragement to try to hang in there and do whatever you have to do to stay with the protocol of the meds.  This protocol was developed over many trials, not just a number picked out of the air.  

We all want to see you succeed with the firt trt and not do it again.  You had a und at 4 weeks which is great, so you are right on track.  Do whatever you can do to get yourself through these 9 days and you'll never have to look back to think of what shortcutting the trt did to your chances to SVR.  

Since one forum member couldn't finish their 12 weeks, don't be convinced that you'll be fine if you do too.  There's no data to back up shortening the time of Inc and SVR.  Hang in there if you can.  

BTW, I take neupogen 2x per week due to low ANC levels and it doesn't make me feel any better.  My WBC's are usually lower than your's.  You didn't mention your Hgb level, so keep an eye on that.   Best of luck and let us know how you're doing.  

[halbev]

All I can say  is Hang in There !!!
I will be taking my last 2 pills of Incevik tonight at 10:00 pm, and cannot wait !! I have felt Very Rundown the last week, having come so far I am only going to stop when they tell me, I am tired of doing this, my labs are every bit as low as yours just be determined, WB 2.0 RBC 2.88 Hgb10.0 Platelet 61.0 I had them done today at 11:00 am I told then I would see them later !! I have Interferon/Ribavirin to do and the could call me and tell me when my next appointment is, as long as I was not falling over I would be fine.
GET MEAN BE DETERMINED !!
Not My First Rodeo I did 20 months Interferon/Ribavirin treatment before this had 6 month break and on to Triple treatment with Incevik

[working dog]

i just want you to be careful....you'll notice no one answered your question....not me...no one.....what difference will the last 9 days make?? i don't know... i've read not that much...the incivek does most of what it does in the earlier weeks....lets face if i'm building a house or a bridge or working on any superstructure i know i'm allowing at least 150 percent...do you think just maybe the drug companies aren't allowed to get approved drugs only going 100 percent of the way...i don't think so....but i do agree if you feel you can... go for it.....i like to think its neat when people question things..and i don't feel like i have to always get along with everyone here...but at the same time i really do wish everyone the best of luck and i'm thankful to be able to get info here.....good luck...billy

[willbb]

I think you can gather from the response you have recieved .most would advise it is usually best to take all the meds as prescribed and for the length of time needed and unanimously other than one response suggested you do not stop any medication until you could speak with your doctor about it.

Having said all that,,just so you know ..there were trial patients that prior to the 12 week mark stopped invivek early to garner info on the result.(and this is only if they qualified by being UND early...4 weeks) The fact is that there was not that much difference in overall success.

Your posts never mentioned if and when you were UND. as this would be important

My point is...that if this truly unbearable for you... possibly see what the doctors knowledgeable  and advice might be in that regard.
Again. tho  best to,never stop a drug on your own or because thats what a non-professional may advise.

Hope it works out for you..
Will

[willbb]

meant  "possibly see what a knowlegable doctors advice might be in that regard"

[suezeeque]

OP said UND at 4 weeks.  :)

[Gerbils]

"Since one forum member couldn't finish"...gads! I wonder who that could be? As the first and only wimp who couldn't finish the incivek any thoughts I might have would of course lack value and should be dismissed.

I don't believe I encouraged anyone to stop any medication early on their own advice. I am not a doctor or a psychologist but when someone says they feel like they are dying and are trying to save themselves there is a possibility that a real concern exists. Some people on this medication can have real medical or psychological problems that should not be ignored and your insistance that everyone must be just like you and just tough it out is contrary to the medical advice that we have all received to let our doctors know what is going on and follow their advice.

[mykids247]

My two cents on this is try, try, try!!! Kind of like when your at the gym and the trainer says give me 5 more push-up and you say I cant I'm going to be sick and she says I dont care do it anyway, and YOU DO IT!!!!! This you can do!!! And ONLY if your dr. tells you not to! And thats my two cents! Good luck, finish and never have to look back and say "what if" give it all and then when you dont think you have anymore dig deeper and pray that god will carry you to the end. :)  Be safe, stay on the couch and call for room service!

[redsurfer]

hey.. i treated two times before and relapsed .. i never want to hear those words again.. this time i am goin for broke and i have to advise that you do the same..i know its hell especially the incivek and i wanted to quit too..but i did not... if you stop early it could lower your chances by 15 or 20 % that is not good enough .. you dont wanna redo this **** ...get it over with ..kill that virus once n for all...unless your gonna die.. stay the course

[Gerbils]

I think that some people here are no longer listening to what people are saying or taking a cavaier attitude towards what others are saying. The vast majority of people will survive Hep C treatment but we are in fairly new territory with some of these drugs and refusing to listen to people can have tragic consequences. I know no one here wants anyone to get hurt but remember the sweat lodge deaths? Here is a brief description of events:

"Last October, a celebrated New Age practitioner held a sweat lodge ceremony that ran dangerously amok, shattering the tranquillity of a spiritual center hidden in a forested valley here.

Packed into a circular hut on the grounds of Angel Valley were red-hot rocks, seething steam and scores of followers of James A. Ray, a California self-help guru. He encouraged them to finish the final test in his “Spiritual Warrior” retreat, participants told law enforcement officials, even though they might feel as though they were going to die.

Three of them did. Numerous others were rushed to hospitals."
-This quote is from the New York Times October 10, 2010.

I hope Cyn can complete the tx but obviously the next 9 days are not "a piece of cake" for her. What is disturbing here is that someone can actually say " HELP! I feel like I am dying... I can't breathe..." and people aren't saying go to your doctor- they are saying, "Tough it out- I did it- You don't want to have to repeat this." Of course she doesn't want a repeat. But the treatment comes with many warnings and ignoring symptoms IS and can be dangerous. I didn't decide to stop. I was told to stop by my doctor due to a rash that would not stop that he felt was reaching dangerous proportions. Some of you may have forgotten that everyone is different and someone could have a much harder time with the side effects than you did. Everyone should be listening and taking the advice of their doctors.

[willbb]

What is disturbing here is that someone can actually say " HELP! I feel like I am dying... I can't breathe..." and people aren't saying go to your doctor-
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Gerbils ..I believe this is a tad unfair.. Just looked at the thread and more than half said ... "talk to your doctor

Best to you
Will

[redsurfer]

in the original post cyn 621 said her dr recommends that she finish the 9 days .. so i assumed that was her best option to follow her drs direction ...this is not caviler ... we are talking about hep c here.. not some cosmetic procedure or crazy diet ...hep c is serious and can kill you ..we all know that ..

but your right ....she should make sure and go in to see her dr before she makes any decisions from what we all say... cause there could be something medical that needs to be addressed....i identified with how she feels cause i felt just like that and want to encourage her to make it ..but yeah ..ask your dr again ...make sure your body can take it ..
have a great day all !!