Hepatitis C Community
9 Days left on Incivek but struggling
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

9 Days left on Incivek but struggling

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!
Related Discussions
73 Comments Post a Comment
Blank
190885_tn?1333029491
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
Blank
Avatar_m_tn
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
Blank
Avatar_m_tn
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?
Blank
Avatar_m_tn
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
Blank
1765684_tn?1333822768
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.  :)
Blank
1749655_tn?1321804534
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.
Blank
Avatar_m_tn
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.  
Blank
Avatar_f_tn
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.
Blank
190885_tn?1333029491
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
Blank
Avatar_m_tn
by lynda:
   Work with your doctor and don't take the advice of a non professional about stopping early.
-----------------------------------------------------------------------------------------------------
This seems like excellent advice IMO
Blank
Avatar_m_tn
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.
Blank
980756_tn?1313449508
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
Blank
1669790_tn?1333666195
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.  
Blank
1789051_tn?1318380489
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

Blank
190885_tn?1333029491
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
Blank
Avatar_m_tn
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
Blank
Avatar_m_tn
meant  "possibly see what a knowlegable doctors advice might be in that regard"
Blank
1765684_tn?1333822768
OP said UND at 4 weeks.  :)
Blank
Avatar_f_tn
"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.
Blank
Avatar_f_tn
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!
Blank
1826037_tn?1320340914
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
Blank
Avatar_f_tn
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.
Blank
Avatar_m_tn
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-
-------------------------------------------------------------------------------------------------------
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
Blank
1826037_tn?1320340914
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 !!
Blank
Avatar_m_tn
The last week of Incivik was to me the most agonizing and hellish week of all. I lost 3 days of work, could not breathe or move, hgb down to 8.9 and di not have the desire to caryy on. Depression was creeping in...but, I went to my D. expalined all and he said you gotta hang in there, weekly cbc's careful monitoring and the last 10 days were past me. Now I am revocering from Incivik am on shot 15 and was UND at week 12 PCR, so I am hoping to finish in 10 more weeks and get to SVR. Itthink the advice here leans towards following your Dr.s advice, that is why you pay him, not us. Too many variables in these posters particular conditons to really draw a sound conclusion. Good luck.
Blank
179856_tn?1333550962
Good for you spydie and you know what I don't remember you complaining about it at all....I really don't. That is the attitude you have to have, feeling like you are dying from anemia is not really dying from anemia.  And if someone did think they were dying from anemia somehow and felt the best thing to do was chat about it on an internet forum rather than contact their doctor....well they do have other problems that need to be addressed.

None of us are doctors nor did any one that I know of on here stay at a Holiday Inn Express last night. ;)

Blank
223152_tn?1346981971
Maybe I am missing something here but you say you cannot breathe and then only give your white blood count and your platelets.  Neither of these are going to make it so you can't breathe.  You say your doctor just wants you to push through these last 9 days without neupogen and then hopes you will feel better.  THis does not make sense.

What is your hemoglobin?  What does your doctor and your labs say about your anemia?  It seems like this is the elephant in the room and has not been addressed.  Give me some numbers and tell me if you have been dose reduced or had discussions on procrit.

I do hope you will continue with the INC dosing for the remainder.  I am not on INC so cannot know how bad this triple is.  I am taking VIC and the sx are acceptable.  I understand your struggle and the difficulty to justify this treatment when you are only stage 1, but really, you only want to do this once and you are almost half way there.

frijole

As Lynda and Can-do and others have said, neupogen is not going to make you feel better.  Besides, you didn't even give us your ANC, only your WBC and, frankly, it is not that bad.  I did 56 weeks of treatment with WBC lower than that.  
Blank
184420_tn?1326743408
i so wish i only had 9 days left... ha ha ha
Blank
Avatar_f_tn
To go along with what others have said. I dont think for one minute that anyone here would say, Ah dont be a baby just do it! Not the case at all. Like I told her push on UNLESS told differently by her DOCTOR> You never want to look back and think, Maybe, what if I had done this or that. Just do the best you can and then hope for the best. Good luck to you and hopefully your Dr. will come up with something to help you with the next 9 days.
Blank
179856_tn?1333550962
Suck it up PJ you ain't going anywhere you are doing this and that is that is that.  We won't let you do it again ;)

Yes Cyn what is your hemoglobin HGB?  Believe me lots of us have had pretty bad anemia and some have done the entire course of treatment living in the 6s because of Thalessemia and man I can't imagine that (but that is extremely rare and do to pre-existing disease).
Blank
184420_tn?1326743408
LOL thanks for the smile dear ...  im hanging in there and i will make it thru, im lucky so far my hemo and wbc are not too bad hope it stays that way .... far as i know, nobody has died from this yet even though sometimes we might want to haha... when im feeling really bad my dog is the best she comes and snuggles with me that helps, if you cant work you cant work, havent missed a day yet except the first day but im taking this friday off cant wait its all i can do to work and get home.. rest on the couch.. make dinner.. rest on the couch... do some laundry ... rest on the couch... lol ...i feel like im 90 years old sometimes but i guess i can consider this practice for when i get that old haha... hang in everyone we can do this!!!!
Blank
Avatar_f_tn
Thank you for all your comments and advice.  Although I'm feeling really sick now so I did cry but hey everything makes me cry it seems.  I did take the incivek last night and this morning so far I'm still on it.  My Hemoglobin is 9.0 but the two my doctor circled and discussed with me as being a concern were WBC (2.0) and Platelet Count 109.  He said the breathing issues were coming from the low WBC because that is what puts oxegen into the blood.  That is when he talked about the Neupogen.  I specifically asked about Procruit (I had read a lot of people posting about that) but he said that's for Red Blood Cells not white and I would need Neupogen.  I'm sorry I do not know what ANC is and there is nothing labeled that on my blood work. Is there another name?  I have a call into the doctor to see what he says about stopping early.  Will let everyone know.  Cyndi
Blank
179856_tn?1333550962
You need Procrit to work in your bone marrow to create MORE RED BLOOD CELLS TO CARRY THE OXYGEN, the 9.0 is hemolytic anemia and is caused by the meds and you need PROCRIT to bring it up.

THAT is why you feel so horribly and can't breathe it has nothing to do with white blood cells at all the whites are responsible for your immune system and protecting against infection.  They do not cause hemolytic anemia!!!!!!!!
Blank
179856_tn?1333550962
WHITE BLOOD CELLS
White blood cells, or leukocytes (also spelled "leucocytes", leuco- Ancient Greek "white"), are cells of the immune system involved in defending the body against both infectious disease and foreign materials. Five[1] different and diverse types of leukocytes exist, but they are all produced and derived from a multipotent cell in the bone marrow known as a hematopoietic stem cell. They live for about 3 to 4 days in the average human body. Leukocytes are found throughout the body, including the blood and lymphatic system.[2]

RED BLOOD CELLS
Red blood cells (also referred to as erythrocytes) are the most common type of blood cell and the vertebrate organism's principal means of delivering oxygen (O2) to the body tissues via the blood flow through the circulatory system. They take up oxygen in the lungs or gills and release it while squeezing through the body's capillaries.

HEMOGLOBIN
Hemoglobin (English pronunciation: /hiːməˈɡloʊbɪn/; also rendered as haemoglobin and abbreviated Hb or Hgb) is the iron-containing oxygen-transport metalloprotein in the red blood cells of all vertebrates,[1] with the exception of the fish family Channichthyidae,[2] as well as the tissues of some invertebrates. Hemoglobin in the blood carries oxygen from the respiratory organs (lungs or gills) to the rest of the body (i.e., the tissues) where it releases the oxygen to burn nutrients to provide energy to power the functions of the organism, and collects the resultant carbon dioxide to bring it back to the respiratory organs to be dispensed from the organism.





Blank
Avatar_m_tn
Scary docs Cyn, they are so very wrong.  Platelets and ANC have nothing to do with your breathing and your WBC and platelets aren't that bad.  Concerning, but not that bad!  You need the Procrit because the hgb is low and that's what is going to make you feel better.  

Normal HGB runs between 12 and 15 and that depends on what lab is used and with men it's a little higher so do you see why you are feeling  fatigued and out of breath?  Compound that with the side effects from the Incivek and it's the perfect storm.
Blank
1669790_tn?1333666195
ANC = absolute neutrophil count.  On my one report it is listed as GRAN.  
The absolute neutrophil /granulocytes count (ANC, GRAN or GR#) is important as it is a factor of the WBC that fights infection.   As I mentioned earlier, I receive neupogen 2x per week due to low ANC level, but I don't feel better after the shot.

Hemoglobin (Hgb) is important as a low level indicates anemia and contributes to a feeling of fatigue.  The red blood cells carry oxygen, so a low (9.0) Hgb could cause the breathing issue, not low WBC or ANC levels.  Procrit is the rescue drug for low Hgb, but it often takes a few weeks for your levels to respond and feel better.

I'm sure you understand we are only providing you encouragement and we don't know exactly how you feel.  This is a very personal decision you need to discuss with your doctor so you both feel comfortable moving forward.  Best wishes to you and hope you feel better.
Blank
Avatar_f_tn
See this is sometimes where i have an issue with us automatically telling a member to follow doctors advice... I know we aren't doctors, but here is a perfect example where Cyn's doctor is completely clueless!  
Blank
148588_tn?1412862268
No one can answer your question on whether or not those last nine days are necessary because, as far as I know, no one has ever done a trial comparing 12 weeks to say 10 weeks or 14. No one - not your doctor, not anyone on this board, not the maker of the drug - could say whether you've already done more than enough or whether you should actually do more than 12.
If you'd been taking weekly viral load tests or had taken the IL28B gene test, you could make an educated guess - but it would still be a guess. HCV treatment is just starting to come out of the Dark Ages and it will probably be another ten years before we have the genetic testing and the proper drugs to provide true individualized treatment. Till then, welcome to the cookie cutter.
Blank
Avatar_m_tn
Have to agree its your HGB causing you to be out of breath and not sure just stopping the Incivek is going to help much.

My ANC has shown up as Ab neut before.

Remember your doctor most likely has many patients so if you really want to stop i'm sure he won't insist you go on.
Blank
Avatar_f_tn
This is not true, actually Vertex did study 8 week, 10 week and 12 weeks.  Results are here

http://www.clinicaloptions.com/Hepatitis/Conference%20Coverage/AASLD%202010/Tracks/HCV%20Treatment/HCV_Treatment/Pages/Page%201.aspx

and were statistically insignificant.  There is a much more detailed presentation on this that willbb posted not long ago, hopefully he will provide here.  
Blank
Avatar_m_tn
An 8 week and 12 week study only.

The SVR rate was higher in both the 8-week and 12-week telaprevir arms compared with the standard-of-care control arm. Sustained virologic response occurred in 75% of patients in the 12-week group, 69% in the 8-week group,

Few things not clear here like thier IL28b, were they tt, ct, or the great cc. Also their liver conditon, how many whites, blacks, or hispanics?

6% pts might not seem like alot but if you don't know the total make up how much does it mean?........ Plus i wonder what one of those 6% think about it.
Blank
179856_tn?1333550962
Thanks Candyman I didn't want to log in and start getting more junkmail at work but I was curious.  I think if I remember right towards the end of both trials didn't they start really doing the IL28b and becoming very picky with candidates?  I'm just wondering if this is pre-being very very picky or not.

I mean the IL28b alone can change everything and I am pretty sure they were using that in their decision factor after it was developed.

Blank
Avatar_f_tn
There was another presentation in Clinical Options with a graph, it was a slide show and they compared 10 weeks to 12.  I will put my hands on it and post.   But you are right, this info does not include the IL28b testing results.  
Blank
223152_tn?1346981971
cyn
I am glad we got this discussion on track to pin down the problem, and I think we all agree HGB or hemoglobin (which carries the oxygen to the blood) (and thank you, nygirl, for your definitions) is the problem

Either you misunderstood your doctor (and it does not sound like you did, because you are pretty clear in telling us what he said), he is wrong.  Are you treating with a GI (gastroenterologist) rather than a hepatologist?  If possible could you get a referral to a hemotologist (blood specialist)?  You will feel much better if you can get some procrit.  Please call the doctor again and request he order it or refer you to a hemotologist  (ASAP)

frijole
Blank
148588_tn?1412862268
Thank you for the link.

can-do-man:

"6% pts might not seem like alot but if you don't know the total make up how much does it mean?........ Plus i wonder what one of those 6% think about it"

"toxicity-driven discontinuation occurred in 7% and 8% of patients receiving 12-week and 8-week telaprevir, respectively, and in 4% of patients receiving placebo"

I guess there are some other participants whose thoughts it would be interesting to know.
Blank
Avatar_f_tn
I talked to my doctor today and he told me to tough it out (as usual) and that he never said this was going to be 'a walk in the park'. He also said, 'you have the prescription for the blood work'.  Once you're done, get the test and make an appointment to see me.  I really did research this guy and I thought he seemed pretty good but as I got into this, I really started to dislike him.  I did talk to him about going to a hepatologist earlier on and he said you could if you want but you don't need to.  Although I may have mixed up something, I clearly asked him about Procruit in my last visit when he was concerned about the results and he said you don't need Procruit you need Neupogen.  

I know I'm going to take a lot of flack for this but I've decided that Friday will be my last day on Incevik (one week early).  I guess then I have to wait out the week to get the 12 week blood work or do I get that at 11 weeks? II feel like this is the best choice for me.  I have to do something. I don't even feel like a person anymore (I can't function, I don't look like me, I can't even see clearly anymore, blah, blah).  In any case, I'll let you know how it goes.  It may help others.  Thank you to all.  You are so knowledgable and kind. I still have 13 more weeks (or more) on the Interferon and Ribavirin so I'll keep posting.    Cyndi  
Blank
Avatar_m_tn
No flack from me, its your choice and your life, just so you know don't expect a walk in the park with just doing the interferon and ribavirin with the sxs you have mentioned. Interferon is the main cause for low WBC and Ribavirin is the main cause for anemia so i doubt you will see much improvement. I would expect you will still need procrit and maybe even Neupogen.

Wishing you the best.
Blank
1669790_tn?1333666195
I doubt you will hear any flack at all from this group.  We don't walk in your shoes, so there's no way to know how you truely feel each day.  We just want to see you get to SVR.

I hope you tolerate the Inf/Riba well and push through the remaining 13 weeks.   It's unfortunate that some of the docs treating with the PI's don't appear sympathetic to the needs of the patients.  It sounds like some are just too busy, too many patients to handle, or just have a poor bedside manner.  I hope your doc works out for you while providing you the proper guidance.   Best luck to you for the remainder of trt.
Blank
179856_tn?1333550962
Agree with Candoman SOC portion of treatment is no walk in the park either once your numbers are whacked but hopefully you've not put yourself at too much risk of relapse with the decision to stop early. It is your decision just don't expect the numbers to get all that much better as he said the intereferon and riba alone cause the problems.
Blank
223152_tn?1346981971
I rather agree that ending the Incevik may not end the anemia.  It should not take a week to get the results for a blood test, but I am battling the same thing. Good luck with your treatment.  I recommend changing doctors.

frijole
Blank
190885_tn?1333029491
i was feeling great at day 2 and 3 after i stopped the incivek...i really over did it...then i tanked...hgb went way down...its taken a couple weeks to adjust back to the riba/interferon...maybe some kind of withdrawal...but the riba/interferon is so much better then the incivek for me...i can't tell you...i'm sick..have a bad rash...eye site not that great..throat sore...upped my procrit to 60000per week..but i'm having a much better time...these sx i can live with...mentally i feel so much better too...just be ready for an adjustment time after the incivek...take it slow when you start to feel better..and please keep posting...it will help everyone figure this new tx out....good luck....billy




Blank
Avatar_m_tn
If you are saying that patients may experience "Maybe some kind of withdrawal" after stopping Incivek could you please provide study data or supporting medical data that indicates a patient may experience physical or psychological withdrawal upon cessation of Incivek,  I've only seen this stated as personal testimony from you and few others and would appreciate supporting data because as we all know speculation doesn't or first hand experience doesn't necessarily make it so.  In my quest for accurate information so that I might be better prepared for treatment and "learn something" so I will succeed this time as you stated previously, it may provide valuable insight, if of course, there is any supporting data.

Thank you
Blank
Avatar_m_tn
You seem to have made a desicion on the stopping of Inci  a week early and no-one here   would give you any flax for that. Everyone makes their own personal decisions (hopfully with their doctors advice included)  about what they feel is best .
Everyone here just wants to see you succeed
I would concur with any folks above that said it may be best to seek out a more knowledgeable doctor  ,if in fact he  wasn't willing to discuss procrit for you at HGB 9   and thought neup would help that.
Please let us know how you are doing and good luck...
Will
Blank
Avatar_m_tn
Lynda for as long as i been on here there have been quite a few, well really very very many that have done incivek though trials and i cannot recall any of those saying anything about "withdrawal" after stopping the drug.

If that would be the case one would think they would have to ween people off the drug instead of stopping cold turkey........ Also it would need to be listed as of of the side effects, i'll keep looking but it's my opinion this is just another one of those internet rumors be started that has no basis.

Hang in there and good luck when you do start......
Blank
190885_tn?1333029491
come one linda....this is my personal experience ...i thought thats what we are suppose to provide here....am i wrong??? thats what it use to be...whats changed??..pretty soon folks will feel funny writing their sx for fear of being attacked by cheap shots....thats not what the forum is about is it?? isn't it about text + new experiences??..if all we have here is old proven info we could just goggle that...why have a forum??? i'll keep being honest throughout my tx in hopes to help others using triple tx as well as get ifo for myself....billy
  
Blank
1833444_tn?1325560662
I'm on 6 weeks of the 3 combine doses of riba+pegas+incevik. I was wondering if anyone has had an issue of severer itching all over the body? Along with light headiness and dizzy.  This started about a week ago so I took some benadryl and it stopped the itiching but I don't like taking the benadryl ever day...but anyway my question is does anyone have the itching issue? I never had this issue when I was on the 24 weeks of riba+pegas so believing this could possibly be do to the incevik.
Blank
1747881_tn?1358189534
Blank
Avatar_m_tn
You certainly are an anomaly so I guess it could be said old proven info does not apply in your case.  If my asking you for supporting data seems like a cheap shot to you then I must be confused because I was under the impression you have benefited from old proven data provided to you by long standing and knowledgeable members.  
Blank
1833444_tn?1325560662
thank you for directing me to that site it helped out.
Blank
190885_tn?1333029491
i think you can be a great help here..i'm not trying to say that i don't appreciate proven info....but i also think there should be a mix ...some old info...some new ....i worry about some folks not feeling like posting their sx...or how they feel...if theres a car accident i help first....i've helped many people in the past not worrying about if they would blame me for helping...i even carry fire extinguishers with me as well as all kinds of tools and medical stuff to help...as you can see i knew i would get pounded for trying to help cyn...i did the best i could to help...after reading many posts i like to think i can tell when someone is really hurting....the internet can be so misleading....sorry about that ...and again...thanks for the info.......billy    
Blank
Avatar_f_tn
I don't know if there is incivek withdrawals but I had the worse week of my life when I stopped and I think it was because the incivek kept me sleeping and tired, fatigue and when I came off I felt the full force of the Riba that was obvious to high a dose for me. Reducing it straightened everything out. But waking up after sleeping for 3 months because that is what I did. I had very few bad sides from the incivek while on it. Just the itching and sores. It knocked me out for 3 months and I think that was a good thing to get through those months. I'm awake and coming more alive everyday. Still fatigue but nothing like on the incivek. Hopefully my anemia will get better too as I do take procrit but it just kept me stable on the incivek so now maybe it will actually bring it up to stop the fatigue. Some people who don't have the riba reaction will come off the incivek with no problem is my guess.
Blank
Avatar_f_tn
Billy you should tell your experiences as far as giving advice people should know not to take advice unless they talk to there doctor. I personally like hearing what you have and are going threw. We all seem to react differ to the drugs but Cyn has to get to her doctor because he is the only person who knows her history and what to do to make her stay on the incivek. If he's not doing anything to make it easier for her then he's the wrong doctor unfortunately. The risk we all take of getting the wrong doctor
Blank
Avatar_f_tn
Hey Cyn I hope you are feeling a bit better after making your decision. The first thing I wondered when reading your post was that you might be anemic so why is the doctor talking about Neupogen? Something doesn't sound quite right. Others have mentioned that later in the thread.

My suggestion to you is why not get a second opinion on your treatment? Talk to another specialist. Take your test results and ask how you are going. Ask how that person would respond to changes in your blood counts and other side effects and why. If your current doctor has been doing the best for your circumstances, then you can walk away confident in your current doctor. If not, you can switch.

The right doctor makes a huge difference.

Best wishes.
Blank
Avatar_f_tn
Hey Billy. I think you are a unique human being who is experiencing some very common side effects of HCV treatment. You are kind and care about people. I repect that. Everybody needs to use their own judgement about advice given here.
Blank
1826037_tn?1320340914
wow.. hgb @ 9 ..you need procrit girl .. forgive me but your dr sounds like a mess... i would go see an blood specailist asap and get that under control ..maybe you could call someone tomorrow as an emergency ..i know its hard to think when you feel like this but we are worried about you... my hgb continued to go down after i was off incivek and i was already on procrit .. and btw my wbc's were down to 1.2 and i didnt get nupegen ...

..unfortunately we all have to be really proactive with this tx ..it is a new drug ..my hgb went down to 7 at week 8 i seriously had colllapsed veins so i know what 9 feels like and its bad ...im at 9.7 now and i still feel really bad cant breath heart rate up ..all that stuff ..i went and got a second opioion cause i was thinkin i was gonna die.. had all these tests ..they said my heart was ok and things were starting to go back up ..man this is hard ..
dont be afraid to call your dr or get a new one if he /she wont respond... this is your life here !!! you are worth it  if you dont get the right helper drugs you may not be able to finish rx.. and since you already cams so far that would be as shame !
i really feel for you and i hope you are ok and feeling better soon
Blank
1707536_tn?1334977677
We can never know someone else's pain.

I just wanted to wish you a successful outcome whatever course you choose and hope that the remainder of your treatment is tolerable.

Sincerely,
kat
Blank
Avatar_f_tn
I'm just starting week three with Incivek. This is my second time on treatment. And yes this new triple therapy is much harder than the dual therapy. For years my alpha feta protein were normal. I don't drink and i eat all organic foods, etc. Here lately my numbers started to climb right before starting this treatment. It's my understanding once the AFP climbs, you've only got a few years left. I'm not even 50. As horrible as this treatment is, I know dying from liver failure due to HCV's effects is much more horrible way to go. I wouldn't want to stop short and be left to risk damages if the virus returns. Work with your doctor, take the extra meds. I had to with my first round of treatment and I'm sure I will with this one. It will make u feel better I promise. Hang in there. You don't want to risk the alternative - trust me. Take it from someone who is a little more progressed in the disease of HCV,with  this stage I feel death nipping at my heals and I will stay strong and stay on this treatment just to have the chance to be rid of this. Remember drink lots of water!!! It will help ease some of the side effects.
Blank
Avatar_f_tn
In case anyone is curious about the AFP study I mentioned earlier, here's a link:

http://www.internalmedicinenews.com/news/gastroenterology/single-article/afp-level-predicts-mortality-in-hepatitis-c-related-liver-cancer/9089baeaa8.html
Blank
Avatar_m_tn
I was told @ the doctor's office that my husband is probably going through withdrawal, after stopping 12 weeks of Incivek treatment. I tried to get a length of time that it would last, but I couldn't get a definitive answer.
Blank
1789051_tn?1318380489
I have been finished with Incevik for 4-5 weeks, and just now getting over some side effects that came on after I finished. Rash is almost all gone and rectal problem getting better
Blank
1693621_tn?1318906571
well, I honestly hope within the next 24 hrs you would have to see some type of improvement. if during the nite or early tomorrow morning, YOU are still having that feeling of not having anything left in you. Only YOU and YOU only know what your body is trying to tell you... CALL that Dr. firmly let him/her know. That your experencing a horrible bout with some type  of side effect. and that YOU need to be seen immediately.... Today ,there are times ,where you need to be your own type of DR. (a bit)!!! and to be sure YOUR UNDERSTOOD ....it's your body of health ... and they certainly aren't perfect... please be sure to let them know that YOU NEED to see your physican tomorrow. and YOU know what YOUR body is wanting to do...... be sure and blessing your  way ...... even tonite ,go to the emergency room...even if it gets a tad worse.... take  care honey.....
Blank
1976414_tn?1326174923
thank you because i am on wk ten and feel like i am dying and at a crossroad of what to do. really wld like to quit now but dont wanna let close ones down. forcing myself to continue because of family and friends but am miserable and thinking irrationally at times. so tired of being this sick-crying way too much. dr. appt tomorrow........
Blank
Avatar_m_tn
I just finished 12 weels of Incevek and I too thought I was dying.  It was horrible, by week 2 I could not work and cried and threw up and shook and literally called my doctor everyday.  I cleared at undetectable at four weeks, but at week twelve test, my viral load was 150?????  They are keeping me on Peg/riba for 24 weeks and blood test in 6 weeks.  Did anyone else have the virus come back at week twelve and what are my changes on beating the 150 on Peb/Riba?
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank