Watch and Wait

[frijole]

Hello old friends and new friends.  These are comments on my trip to the hepatologist last week….

My history – geno 1a , grade 1, stage 1, probably infected about 1969 -1972 (IVDU)  but maybe 1977 (blood transfusion).   Treated with Peg and Copeg (1200) for 56 weeks (June 05 to August 06).  I had detectible virons – 40 IU/mL at week 12 – so decided to tx 36 weeks after I reached a UND by sensitive testing (week 20) but it was not enough and  I did relapse after treatment ended.

I transferred from my local GI to a hepatologist in Dallas and my first visit was May 07.  At that time,  we decided watch and wait.  I had another biopsy Dec 07 which was a little short of the 3 years, but did that for insurance purposes.

Although my bx results were faxed to the heppo, I wanted her to read the slides.  Since I had not been able to get  through to her medical assistant before the appointment,   I signed the papers at the appointment so she will now have the slides sent to review. When she read my 2005 biopsy slides she  changed the dx from a 1/1 to a stage 1, grade 1-2.  My new bx was also a 1/1 so I am  anxious to see how this one is re-graded.   I want to know if 56 weeks of treatment did anything at all, and my reading of the reports says no.

The bottom line is watch and wait given my “mild hepatitis” as they call it.  She said I have a 20% chance of becoming cirrhotic (I am 60).  She said it is totally my choice to treat or not, but I need to weigh the adverse effects of treatment with the benefits to be gained by clearing.  She also said the trade out my by QOL.

She does feel Telaprevir is the strongest thing on the horizon.  She thinks 3 years before it will be out.   I asked her about heresay that Vertex will ask for FDA approval for it to be released to relapsers before treatment naïve, and she said it is already on the expedite track and that, if anything, drugs are usually released for treatment naïve first.

I did visit with the trial coordinator who brought up papers for me to sign for the Omega Duros trial.  I am not interested in that one because research shows (me)  that omega interferon does not have as  high a SVR rate as interferon Alpha 2a & 2b.  So I didn’t think the injection method (an implant in the arm that releases interferon over a steady rate for months) would be enough to counteract the inadequacies of the Omega interferon.

I am scheduled to come back  for the Hepatitis C Clinic to sign up for the next Telaprevir study for nonresponders maybe in the fall.  It will depend on what Vertex’s definition of non-responder is and whether that includes relapsers.  But again, the heppo want me to think of the cost and time versus benefits.  Weekly flights to Dallas for first mo, then maybe monthly, and quarterly.  Lots of time off work and travel expense.

So that’s it, my friends.  I shall remain a fly on the wall for now.
frijole

[r4c7]

Having almost completed treatment (in week 46 of 48) and now having firsthand experience as to what its like to live in a living hell, if I were a stage 1 or 2, I would wait as long as I could.  Who knows, with technology advancing like it is, you would think that eventually a drug will become available that will dramatically slow the progression of hep C, making it possible to live with the disease and without the awful side effects of treatment.  FOR MANY OF US, THAT MIGHT BE A VERY SUCCESSFUL OUTCOME!

r4

[fretboard]

If you look at my pics you can see a pic of my fat hands, it's just a sample.  I mean it's not a sample as in they get fatter.  LOL  I hope they don't, but I've been to a couple of different doctors and they said that it's from IVDU.  My feet and my hands swell daily  and I do know that they (my hands) swelled since I was in my late 20's or early 30's.  I get a diuretic, but I seldom use it.  Do you happen to swell?  It's a strange thing, but I ran into my ex-wife a few years back and her hands swell too.  She is also HepC positive.  Anyways, just wanted to get back to you on that, see what you thought?  Or anyone else.  God Bless    

[Tallahassee]

Ditto all folks recommending VX with SOC (western omelet with the eggs, onions, and beans!)

All the best to you, my friend!!

Hugs

[dointime]

The fly in the ointment with telaprevir is that it seems to be a one-time shot because after that you develop resistance, not just to it but maybe to all the protease inhibitors that target the NS3 protease.  

On the other hand, the results coming out of the Prove3 trial are showing very good results for relapsers, so there's a good chance that you would nail the virus at the first shot.  

I soooo understand the feeling of just wanting rid of that f****** virus.   Maybe by the time you have to decide about the trial we will have more results from Prove3.  Also we might find out if Vertex will get early approval for telaprevir for non-responders.

You have the liver time so I guess you really have to weigh up the risks of the trial with the time you will have to live with the virus if you wait for the drug to be approved.  Another factor might be that other drugs will be coming onstream by then too, giving a combo of 2 active agents and an even better chance of SVR.  It's a tough one but at least you have the choice.  I was in the Vertex no-riba arm of the Prove2 trial and had breakthrough so I have PI resistance already.  I feel that living with the virus really ***** but so do the drugs.  I have liver time so I'll wait for a real killer combo to come along.  

Best wishes
Dointime

[FlGuy]

Some hcv'ers have inate responses like 'get these buggers out of me' and 'I don't want to be contagious'.  If you look at the contagious aspects, I'd imagine it would be pretty difficult for you to pass it on.  I imagine that you might be beyond veritcal transmission to an offspring, you know not to attempt blood donation and I'm guessing that that you are not involved in needle-sharing and IVDU so much. So, that limits the number of possibilities for outbound virus from you to others.  No one can tell you 'oh, don't worry about it' but you probably realize that you are no Typhoid Mary either.  Even in the course of your occuppation, the blood extraced for the benefit of the IRS isn't yours either.

[zazza]

Good to hear from you, Kathy! I went for my 3 months post PCR today, so I will be in touch in about a week from now and tell you how it went. My liver enzymes are still really low since tx and AST is like 1.5 times greater than ALT, which is a good sign, so I am hoping for the best.

I totally agree with FlGuy's opinion about Telaprevir and SOC being your best option. I am positive you will beat the dragon with this 3-drug combo.

Take care!