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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!
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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 !!
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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.
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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. ;)

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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.  
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184420 tn?1326743408
i so wish i only had 9 days left... ha ha ha
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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.
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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).
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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!!!!
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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
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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!!!!!!!!
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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.





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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.
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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.
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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!  
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148588 tn?1465782409
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.
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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.
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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.  
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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.
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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.

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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.  
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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
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148588 tn?1465782409
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.
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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  
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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.
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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.
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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.
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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
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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




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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
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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
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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......
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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
  
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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.
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1747881 tn?1511918860
http://www.medhelp.org/forums/search/75?query=itching
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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.  
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1833444 tn?1325560662
thank you for directing me to that site it helped out.
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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    
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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.
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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
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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.
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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.
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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
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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
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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.
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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
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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.
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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
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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.....
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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........
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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?
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