Not Really Sure What to Do!

[SufficientGrace]

Visit with Nurse Practitioner yesterday to discuss treatment options.

1. Treat with telepavir with SOC treatment. Telepavir has to be taken 3x a day (2 pills) 7-9 hours a part with SOC. CANNOT miss or delay telepavir dosage...even if you have to wake up in the middle of night, leave an important meeting. If you do, they may take you off the drug as the virus in your body could develop a resistance which could determine whether can be treated with protese inhibitors in the future. Have to take telepavir for 12 weeks...then SOC of care for 12 to 36 weeks (depending on how you respond to treatment)

2. The other new drug is similar...but treatment could be longer.

3. Participate in Phase III clinical trial: TMC435 with SOC. 33% chance of getting placebo. 12-36 weeks of treatment. No cost to me...would have to get another liver biopsy. TMC435 is only one dose daily (better for me).

4. I asked about drugs in the pipeline, specifically anti-viral that would not require SOC with it. She said that is years away.

With my situation, I have a 92% chance of clearing the virus. I don't think I can do the new drugs as I am afraid of missing a dosage and ruining future chances of treatment. I have never been treated. She said my labs look fairly good...she'll do an ultrasound to confirm fibrosis test. Said I have time to make decision.  

After researching further, I noticed all the activity on new clinical trials. I am so very tempted to wait a bit to see what else is approved in the near futures.

Any advice or input would be appreciated!

[elpasolady]

I feel your pain. I am in kind of the same situation.  I have had this virus for 33 years and have only mild liver damage.  My levels are normal most times i am tested but not always.  I feel great and wonder if I should just wait and see, but I am excited about the new drugs.  However, I am presently not working so that allows me time to be 'sick' with side effects and able to rest.  Also, not sure how long we will have insurance due to my husbands employment.  These two things push me to make the decision for tx now.  I can fight it better the healthier I am, is my thinking.  It is, however, a tough decision to make, knowing what we know about the side effects.
As far as you being fearful of forgetting your meds on time, you can buy a watch or set your phone to give you numerous alarms during the day.  My father does that or her would forget his meds.  Also, just knowing how important it is to NOT miss a dose, will help your memory, don't you think?  I am very forgetful as well, however I can't imagine letting this slip by knowing how detrimental it will be to my tx.  I too, will be taking the Teleprevir.
I totally agree though with the advice above about being committed to tx.  If you can not be, then maybe now is not the time.
All the best to you!

[dointime]

I'd just like to add - you also can't assume that the TMC435 trial would be less of a tough option, even given only once a day dosing.  SOC sides can be tough enough on their own, and in my experience of the one trial I did, any trial is a more demanding option than tx with your own doc.

Your option 4 - tx without SOC - may be 3-5 years away.  Look up info on Pharmasset and PSI-7977.  In my opinion it is a feasible and valid choice for you to wait for a non-SOC tx or catch one of the trials that Pharmasset are doing - preferably a phase 3 in a few years.

dointime  

[dointime]

It's a question of do you take the bird in the hand or the two in the bush?  Nobody can answer that for you.

I can however say that if you go for the telaprevir now then you will need to be committed and put it to the top of your priority list.  Others have done this treatment and worked all the way through but there's no guarantee that the sides you get will let you do that.  You might have to take some time off whatever else you are doing.  The 3xdaily dosing is rigorous - I did it myself.  If you are in the place in your life where you feel you cannot put your tx first then I'd recommend not treating until you can.  Sounds like you have plenty liver time so you don't need to be in any rush.

dointime.  

[willbb]

Hi there..Your nurse is correct that ..with having the CC allele  in studies to date  show you would have approx. 90 % chance of success and would be even somewhat better than that if you were to clear in 4 weeks,doing the triple SOC + Inciveck (Tela)

  You say you have stage0  -1 fibrosis,,shown by biopsy 5 years ago. Have you had a biopsy since then? And not sure what you mean by a fibrosis test,  do you mean a fibroscan or a  blood test(fibrotest)? Biopsy is still considered the gold standard of tests for fibrosis. Also ultrasound is not  a marker for fibrosis.

If indeed you are Still st.0 or 1 fibrosis.,,you have lots of options ,  treat now and have an excellent chance of success or wait for .what is currently in trials now  (an Interferon free regime)...however  these meds could be as much as 3 to 5 years away according to many in the medical field.

Another important aspect to consider when giving thought to when is best to treat..is when do you feel is best for were you are at in your life..ie. job,medical coverage,family commitments etc. as this is going to take a minimum of six months to do...possibly with side effects.

Just some thoughts and always a personal decision to be made in conjunction with a doc who is knowledgeable in treating HCV..

Best to you

Will

[SufficientGrace]

Yes, I have had the IL28B test (cc?). The good result.

Between 0-1 on fibrosis. Labs good. ALT a bit high. But overall good.

I am going to have an ultrasound in July to re-confirm liver disease stage. Had a biopsy 5 years ago and fibrosis test in Jan. Both show minimal fibrosis.

The nurse said that "if" I clear the virus in 4 weeks on the telepavir with SOC treatment, and because I am Genotype 1, first-time treatment--I have a 92% chance of fully clearing the virus at the end of treatment.

Thanks so much responding.

[HectorSF]

Maybe I missed something...Why do you say you have a 92% chance of clearing the virus?

Have you had a IL28B test?

What stage of liver disease was indicated on your biopsy report.

Hector