Question for a question

I'm new to this, but was wondering...........can anyone answer my questions??? I start shot 1 tomoro. M geno 1a, age 46 female. Been on tele for  wks. Cleared at week 2, then week 4, was detectable again. Can't do it again. The study dropped me cuz of the detection. Sed I was getting resistant to the telepriver combined with a protease inhibitor. Does this mean, I will be hard to treat with SOC?? I am scared to death of the SOC...........comments from anyone appreciated, thanks!

[Trinity4]

I don't think so and my reasoning is your Telaprevir trial obviously did not include interferon. I don't know if you were in the protease/polymerase trial which is non interferon but whatever the terms of the trial were the interferon was needed to mop things up.  

You may respond very well to interferon and ribavirin.  You just have to wait and see.  More than likely, you will be kicking yourself in the a-s-s for fretting so much about SOC because it's not that bad.  I would have been more concerned with the long term effects of the trial drugs because they don't know enough about them yet.  At least with SOC we have a real good idea of what can happen short and long term but in most cases it doesn't happen or if so it's manageable.  

Trinity

[pcds]

SOC is doable.  The hope is a shorter tx time with Telaprevir, shorter is easier to do, it's that simple.  The hardest part for me when on SOC was the need for neupogin which knocked me down again in the middle of the week with fatigue just as I was climbing out of the effects of the interferon on the week end.  I did 13 weeks, I can do 24, so can you I will bet.  There will be lots of people starting tx at the same time when the new drugs come out sometime in 2011.
pcds

[R Glass]

Please don’t take this as a personal attack.
One of my Pet Peeves is telling people “It Is Doable.” It is doable for most, but for some it is not. I do not believe in advising people not to treat but I believe in telling them the facts and the facts are, it is not doable for everyone.

The most serious side effects of Pegasys and Copegus are:
· Mental health problems (such as depression, thoughts about suicide, suicide attempts and relapse of drug abuse or drug overdose, all of which can lead to death. Other problems include thoughts of homicide or hurting other people, irritability, anxiety, aggressiveness, bipolar disorders, mania, and hallucinations)
· Blood problems (like a drop in blood cells leading to increased risk for infections, bleeding and/or heart or circulatory problems). Low levels of red blood cells can cause death in patients taking Copegus.
· Other blood disorders
· Problems with pregnancy
· Lung problems (like trouble breathing, pneumonia, inflammation of lung tissue, and high lung blood pressure), sometimes requiring a machine to breathe and/or causing death
· Eye problems (blurred, loss of vision, and retinal detachment)
· Autoimmune problems (where the body's immune system attacks the body's own cells), such as psoriasis (as skin disease), systemic lupus erythematosus, rheumatoid arthritis
· Heart problems (including high or low blood pressure, chest pain, fast heart rate, and heart attacks) which can lead to death
· Stomach pain (stomach or corneal ulcers)
· Rash with fever or blisters
· Weakness, loss of coordination, numbness, and difficulty speaking due to stroke, including patients with no known risk for stroke
· Liver problems (rarely, liver function worsens) including an increased chance of liver failure in patients with cirrhosis. Patients with both the hepatitis C virus and HIV have an increased chance of liver failure during Pegasys treatment. Change in a blood test that measures liver inflammation occurs more often in patients with hepatitis B. Severe liver damage can lead to death
· Colitis (inflammation of the colon, which can cause abdominal pain, bloody diarrhea, and fever) which can lead to death
· Inflammation of the pancreas, muscles, and bile ducts which can lead to death
· Blood sugar problems such as high or low blood sugar and diabetes
· Bacterial, viral, fungal infections (such as in the blood, bones, heart, kidneys and lungs) which can lead to death

[willbb]

I won"t speak for  pcds, however it may seem that her term "its doable" was meant more in the context of encouareagement to someone very nervous starting tx.

Everyone will have different resopnses to tx.. some having very mild sx. to the very severe,and each person will know by the way they feel and by following their labs how it is going for them personally.

People can certainly do their own research,prior to starting tx.on all the potential sx. and be  diligent on monitering their own condition.

A lot of the same side effects listed above are the same ones listed for simple everyday over the counter med.s   The dx companys list them all in order to cover themselves against suit.

As I read on here last night,and thought it was a very true statement   was that one of the main sx. of  tx. was SVR.

Also we know that one of the main sx.of liver disease left untreated  can be a devastating one all on its own.

Unfortunately, the dx. we take today are all we have and hopfully   the newer meds . will afford us dealing with less of these sx. down the road..
Will

[Trinity4]

Having done 72 wks of treatment with all the usual side effects but no SVR or post long term side effects I still have to deal with the fact that I have this wretched disease everyday and know everyday it's ravaging my liver a little more.  I don't know what it's like to wake up and be SVR but on the other hand feel like s-h-i-t or deal with maladies related to treatment.  I guess in one way or another we all have our crosses to bear.

Trinity

[R Glass]

I’m grateful for my SVR and remember like it was yesterday, the nauces feeling I got when I heard the news of your relapse. I am not using this as an opportunity to whine about the long-term damage. I am actually doing a lot better and accepted the fact it may take a couple of more years to fully recover or at least adapt. The point I was trying to make was that not everyone can do SOC. I know there is no way in hell I would have been able to complete 72 weeks. My Dr. would have stopped long before then. He almost stopped it at week 16. This is why I have a problem with the term “doable”. Over the years we have seen several people that had to stop tx, some on their own and some because their Dr.s stopped it. It is not doable for everyone.

[Trinity4]

Ricky, I know you weren't whining and I wasn't trying to imply you weren't grateful.  Not in the least. I've seen you suffer and it's almost like SVR was a double edge sword for you.  

It's been a year since learning of my relapse and I'd like to just wake up one morning without having to think of hepc.  It doesn't consume me, I have a good life but it's like a looming black cloud and having to think about options like what if they don't release the PI's soon.  What if my upcoming biopsy shows more liver degeneration?  Where do I go from here?  That's the part I hate the most.

Honestly, it was very doable for me, I just wish to h-e-ll it would of worked.

[Diane12855]

If you listen to the commercials about the new drugs these days... from Viagra to RA meds... they can all kill you dead in the right situation. The OP said she was scared to do SOC, and she really needs to know that lots of people are able  to continue with their life... although not very comfortably... and then reach SVR. Though unpleasant for most of us, there are even people on here who are saying that their sx are no big problem at all. None of us will ever know how our body is going to handle it until we try it, and if the liver damage is already progressing, then that is the thing to do.

Diane

[Trish77]

Ricky, perhaps you have a point.  I've used that term "do-able" before as well and yet I know that, as you've said, it's not do-able for some.  I can name a number of people in my head that had to stop treatment.  It IS do-able for many people however compared to the ones that need to stop for adverse effects.  Many of us worked through treatment and there were some that couldn't.  So perhaps we need to qualify that term a little better when using it and I know I will from now on, I just don't want to see us going too far the other way.  As long as the picture is clear and we're not setting someone up to feel as if they themself have failed somehow if treatment ends up not being "do-able" for them...and perhaps that's what your issue is.  I can see that.

Trish

[R Glass]

You get it.
The last thing I want to do is scare anyone from tx. I have to watch myself   because I know I can come across like I am. Being truthful about tx is something I feel very strongly about. I just have to be careful about how I do it.

[pcds]

OK everyone let me clarify.  Treatment was not easy for me.  But  it was DO ABLE for ME.  I was only on tx 13 weeks, it was tough, but I would have continued if I was undec at after 12 weeks.  48 weeks is a longtime.  I personally, today, given the dx of HCV and the knowledge I have gained from this forum, I would wait for the new drugs.  I did 13 weeks for nothing.  I still brood about it.  But it's over.  Whenever I post anything on this website I am only speaking for myself and would never presume it to be anything other then my own experience and my own feelings.  There is not a day that goes by that I don't think about having HCV.  I too want this dark cloud over my health gone.  I don't want to worry anymore about what this virus is doing to my body.  I was willing to risk all the awful things these drugs do to get rid this pestilence.  The suffering was doable, and suffer I did.  There are people who survived the concentration camps of Nazi Germany.  So I did SOC for 13 weeks with neupogin.

[IAmTheWalrus]

84 weeks of TX was "doable" for me, I guess, but I wouldn't wish it on a "monkey on a rock". The subsequent relapse was the worst of all the sx.

I think that the term "doable" is an effort to simplify a complex problem and decision. There are dangers with any course of action, including the choice to do nothing. Once the decision is made, I believe a certain amount of positive thinking is in order because you need to get through it to have the best chance of success.

Trin: You summed it up pretty well describing the cloud that is everpresent. I hope we all can wake up SVR someday!