Treatment or No Treatment

[dennysb]

Hi Everyone,  I am not sure what to do.  I have been accepted into a trial offering SOC.  However, I am afraid of all of the reported side effects,  SInce I don't use drugs my best guess is I have had this since 1985 when I had multiple blood transfusions, but I only discovered it in 2007.  My viral load is almost 6 million but so far my liver functions are normal.  I am scheduled for a biopsy Monday before starting the 48 week treatment regimen.  How do you know if you are one of the lucky ones who will never get sick, OR, if you should pursue treatment and endure all of the side efrects (the hair loss and nausea ones really scare me) to prevent future liver disease.

[Isobella]

As a SVR "graduate" from an earlier trial, my advice would be to read the fine print in the consent.  Really know what you are getting yourself into.  

The sides vary person to person.  I did SOC and had little to no hair loss, actually had a hair gain if you count those long furry eyebrows I grew. Throughout the 48 weeks, my sides were very manageable. I worked part time and went to school part time.

There are dfferent trains of thought on when to treat and when to wait, but the first step in that decision process will be your biopsy results.  That will give you the most accurate information on your options.

Personally, as a 1/0, I opted to tx for free in a trial and (thankfully) reach SVR.  My daughter, on the otherhand is a 1/1 and is waiting to see if 2011 brings the new drugs. Of course, as Write mentioned.....just because the newer tx may be available doesn't mean insurance companies will start paying for it.  

Overall, I can say I was very pleased with the care I received from my trial.....but I will admit to having a backup plan.  My trial allowed no rescue drugs for HGB or WBCs, so in a heartbeat, I would've jumped ship if they called for a dose reduction I didn't agree with and continued care with a private hepa if I needed to.

What trial are you accepted into?  Maybe someone will have more insight.

Keep us posted and best of luck to you

Isobella  

[jepperone]

Well, it looks like your heading in the right direction and have made some serious decisions by getting the biopsy done to find out where your liver is at which is really great and the fact that you have scouted out a trial to get into, it looks like a pretty much given that you have a positive attitude in getting your liver in shape. No one knew what would happen when first starting out on the treatment drugs but learned as the weeks passed because everyone is different and do not react in the same way, as you know but the majority made it to the end of treatment and have gone on to SVR. I treated for 52 weeks, it was not fun but managed to work through out that time and you will be able to also if you keep your positive mind set as it is now. Good Luck to you with the biopsy and your decision to treat now or what until the new IP drugs come to market which will be in addition to SOC, so you can run now with the present soc or wait and still have to do the soc plus the new IP which will still have the same sx’s as the present drugs. A lot of words and probably not much but most have been where you’re at now but wait and see what the biopsy shows then decide.

jep

[WriteItDown]

My feeling is that the risks of having Hep C outweigh the risks of the treatment; but of course there are people who disagree. However, if I were you I would await the results of the biopsy before making a decision on whether to treat right now or not.

The new drugs copyman referred to (Teleprevir and Boceprevir) have had much higher rates of success, as others pointed out, and in some cases they allow you to treat for only 24 weeks. While they do still involve the SOC drugs, you will have a better chance of clearing, possibly in less time. If your biopsy shows that you do not have much liver damage and can afford to wait, that would be my choice.

On the other hand, if you have no insurance you may not be able to get these drugs anyway, and it's also true that no one knows how soon they might be adopted into formularies. So you'll have to take all these things into account when making your decision.

Unfortunately no one knows how fast you might progress, nor how you will react to the treatment drugs.  I wish you the best of luck in making your decision!

[JennyPenny2009]

I totally agree with everything Copyman told you. The only thing I can add is that there is no way to predict who will progress and who will be lucky enough not to get worse as time goes on. A second biopsy 3-5 years after the first one can tell you whether you have progressed but again, it cannot predict the future. If I were you, I'd wait for biopsy results and probably wait for the new drugs due to be released in 2011. They will boost your chances for a sustained viral response.

[Marcia2202]

By the way, not everyone has a lot of hair loss. It is by no means permanent. It grows back beautifully afterwards.

[copyman]

don't let what you read on these internet forums scare you away from treatment. What you read on these forums are mostly from people that are having a hard time with treatment. There are many more people that have no major side effects and have have no need to visit internet forums.

Treating now is a decision only you can make. I can tell you that when participating in a trial, besides getting your meds for free you get excellent care.

Your other option is to wait for the new drugs coming out in about a year. Keep in mind these new drugs will still include the SOC drugs.

Best of luck whatever you decide