decisions - Diane

[Guest guest]

Hi Diane

I am also a 1B genotype, labs near normal - no biopsy yet, so I dont know what condition my liver is in.

I havent done treatment yet either because of my heart.

But Im hoping to do TX soon, and get this bug out of my body.

The only new drugs that will be comming out for the next few years will be the 'Protease Viral Inhibitors'.....the first, set to be approved sometime around June.

They will be added to the standard combo of Interferon and Ribavirin, to attack the HCV from 3 directions, with hopefully better results.

Any other new treatments are still several years away from being approved.

Each one of us who has not treated [or failed treatment] must decide weither to continue to wait, and incur more liver damage, or go ahead and try to 'cure' with this new 3D combo.

Granted side effects during treatment, and long term are a possibility.

BUT - not everyone will have this happen to them.

Each of us are different, and will have a different experiance.

Nothing is set in stone.

There is also no garentee that any future new meds that are approved will be side effect free.

You all must choose - treat this year with the 3D, or continue to wait.

I personally dont see any point in treating immediately with only the Inf/Riba combo anymore, when the new PI's are so close to being released.

A few months might make a big difference in the ability to 'cure'.

There are also other options.

You all could try alternatives protocals to try to slow down the HCV and liver damage while you wait for something new 5+ years from now, like maybe the stand alone drugs, that dont use the Interferon.

But that is a gamble also.

I have been using liver suppliments and a liver friendly diet to try to slow down my HCV.

My heart is bad, and I have been on hold for treatment for over 2 years now.

I have to do something to maintain my health until I can treat, and get cured once and for all.

I may have to wait a long long time, until Interferon is no longer in use.

A lot can happen in that time - liver transplant, liver cancer, or worse.

I will admit - I am a bit freaked out about my situation, but I wont lose it.

I am going to continue to do my own research, and try to take care of my health until my doctors help me decide what to do.

I am keeping them in the loop about my alternative protocals, and they approve.

My alternative protocals seem to be working to keep me healthier, than I would otherwise be.

BUT - I know that they will not 'cure' me, and damage is still happening to my liver.

Now, I hope you are right now discussing all the options with your doctor.

I hope you all decide something that will work for you, and I do wish you the best.

Hang in there - there is a lot of hope.

love

don in ks

From: dianedellicarpini <dellcar9@...>Subject: [ ] decisions Date: Thursday, February 3, 2011, 10:11 AM

We are going back to the doctors office today. He had recomended treatment for my husband. I am extremely concerned about the treatment, especially with all the new meds in the pipe line. On the scale of 0 to 4 his damage is a 2. The doctor said he had ten to fifteen years to live with out treatment. I am very confused and very concerned about long term side affects. Thinking today that we will ask if he can be monitored because he is geno type 1b. Any one else in this situation? Diane ------------------------------------