What's next?

While checking that doc got PCR results for tomorrow's appointment I got a confirmation and some real bad news. Tx does not look promising!  The damn Dragon is winning!!! 10 months of h-ll on earth for nothing!!!!

VL History:

Base: 72,000,000
8 wk:  2,470,000
12 wk:  1,810,000
24 wk:  2,950,000
39 wk:  4,457,570

Oh well, gave it my best shot.

[Pdilly]

There has to be something out there.  Hang on.  I will pray for you!!!

[FlGuy]

You did give it a great shot.  Going back to that earlier thread, maybe it's time to get an appointment with one of those docs in Rochester.  If they do get involved with vx phases you could create an opportunity to make yourself known and if you are going to call it a day with current tx - the timing could be good too.  All is not lost GO.

[APKhaos]

Dammit man, that's nasty news. Truly sorry to hear it.

Guess our discussion about trials might be useful after all. I surely hope so. Keep the faith; you'll kill the ba$tard.

[pln]

I hate reading that. I am very sorry, Maybe give yourself a well deserved rest and wait for one of the trials. Pam

[mkeela]

It's commin...hang in there. Prayers are yours tonight. Mkeela

[hiddenspring1542]

I just read some promising news of a new breakthrough so hang in there.October 26, 2006
Announcing a Major Breakthrough in Hepatitis C Treatment
When two separate studies produce identical results, medical innovations quickly follow. Researchers from Scripps Institute and La Jolla Institute for Allergy and Immunology have come to the same conclusion: Altering a specific immune system molecule allows a rat to successfully fight Hepatitis C. If these findings can be reproduced in humans, an entirely new way to eradicate Hepatitis C may be on the horizon.I found this article at this site on the lefthand side.
http://www.hepatitis-central.com/hcv/hepatitis/loadchart.html

[Rastiss]

As you know, the next VX-950 trials will be for non-responders and has been estimated to start late this year.  You can take a break to regain your strength then give it another shot. You might be able to get in one of the legs with a shorter period.  You just need to knock it out early and from everything we've seen so far, the VX-950 does that.  That's my Plan B if I don't get UND in the next couple of months.  Don't give up.

[GrandmaA]

So sorry to hear the bad news. You certainly tried to beat it.
Hope you can get in that VX trial. I'm saying a prayer for you.

[amommy]

I am so sorry to see those numbers :(  You have given it such a good shot.  Hang in there, and I second the idea of getting an appt. with one of the study docs.  Doesn't hurt to make yourself known and hopefully you can get in one of the vx trials.  Hang in there!

[Myown]

Sorry to hear the news. Your day is comming. Hold to His hand.

[dinomak]

Grandoak. I am so sorry. like everyone is saying hang in there & dont give up hope. In five yrs the way they are tx, us is going to change. Hopefuly!!! it will be one shot or a pill. I am up in ely you well know what 6 #`s to put in front of thease. 2933

[jmjm530]

Sorry about the test results. I agree with FlGuy it's time to look to some top guns for next-step ideas. Don't know where you live, but on the East Coast four of the best are Afdahl in Boston, Dieterich and Jabcobsen in NYC and Schiff in Florida and a little further West, Donald Jensen in Chicago. . All of these docs are on top of the game and hopefully will be able to help identify the best next steps. In addition, all are involved in various trials and can help you determine if any are right for you. After that, you can always take their game plan with you to a more local doctor. It's great what we do here, but I find there's nothing like sitting opposite a well-versed clinician/researcher (or two or three) to help put things in perspective.

Sorry again, and try and keep the spirit up.

Be well.

-- Jim

[goldyn]

Grandoak, there is nothing mutating within you,Its just not the right tx for you, i know it was 10 months of pure hell, but your liver got a good break, I really have a good feeling there are going to be some wonderful txs coming soon , and one of them will have your match then you will watch em all burn.....
                    My prayers and Blessings            
                    To you and your family....
                          Angie

[GrandOak]

Thanks all.

I guess my greatest fear right now is that if the virus is replicating at such a rate when peg\riba is present at maximum dosages in my body, what's it going to do when their absent and there is absolutely nothing to hold it in check?

I mean if I relapsed, I could find some hope in the fact that the meds which are supposed to kill and sterilize were absent and that perhaps a maintenance dosage of them could hold the dragon at bay.

Worse yet, what if rate of breakthrough is an indication that the virus is mutating within me?  I was assured that this has never been the case when I raised the question as I transfered docs last spring.  But I still wonder if increases such as I've been seeing have been observed and documented before?

The thought that my body could be an incubator for such a mutation that makes this virus harder to eradicate is a hard one to digest.

[Kalio1]

Im so sorry you are going through this.
Did you see this from the Conference?

http://www.hivandhepatitis.com/2006icr/ddw/docs/060906_b.html

I think I read somewhere there was a trial for it, I will look and see if I can find it again.

[Kalio1]

Here is the place I read about the Albuferon trials.
http://www.hivandhepatitis.com/hep_c/news/2006/031706_a.html



You have probably seen this, but just in case. This is Dr. Shiffman.

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2003%20Annual%20Update/Modules/ccohep2003_shiffman.aspx

[Kalio1]

You have probably seen this, but just in case. This is Dr. Shiffman.

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2003%20Annual%20Update/Modules/ccohep2003_shiffman.aspx

[merlino]

I am so sorry!

[NYgirl]

GO,

Doing the treatment REALLY helps your chances of NOT developing LIVER CANCER so please don't think it's for "nothing". It might really have saved your life!

Are you going to try Infergen? I know there have been great successes with it.

I'd take a rest and regroup and rebuild body strength and move on. I personally think your doctor F'd up your treatment so bad that it's a joke.  Probably you should have just stopped and then restarted all over - since the first 12 weeks are when we really need to zonk this virus ouut and he downed your meds....

Maybe it would be worth doing that before trying the Infergen for a few weeks and seeing what might happen?

I'm so sorry I wish I had better words.

[merlino]

Deb, just read one of your posts...coming up on 60 weeks. Your almost there.

[friole]

Time to give your bod a break. Your virons are just to evasive for the current treatments.  I am sure you have done the liver a world of good.  Now just reat and let the hemoglobin return to normal.  

sending good thoughts to you
frijole

[FlGuy]

I remember around last Thanksgiving time that you were trying to figure out when your week 12 ended so you could go pcr'ing. Holy carp,  a year later and still counting weeks.  At least this holdiday season you're rounding the curve to the homestretch.

[merlino]

Hey FLGuy, how are things? Has a rough night again. I had these weird leg pains and a very high fever again. And to think I get to do it all over again tonight! Ha! Sad part is other than this cough I feel great today.

[FlGuy]

All is good here, other than the feeling of having a sleep defecit and feeling like I ran 10 miles yesterday without the benefit of having had any exercise. The fever and chill stuff can be annoying too.  Yup, get to do it again tonight.  Your pal doing you a shot favor again?  When will you give it a try?

[merlino]

I don't know of this will be of any help to you. When I went to see my Dr for the first time I asked him questions on just about every treatment there is. When we touched on infergen he did say he had a few patients that did not respond to interferon do very well w/infergen but the sides were a lot harder.

[FlGuy]

When you say lab, I guess you mean a CBC.  Anyway you can sprint out at lunchtime today and do it?  Reasons are: results for sure will be ready for Tues appt, tonight is shot night and how will you feel schleeping around tomorrow, might be better off with blood results at the 'trough' of your tx week.  Just a thought.

[friole]

I had awful leg and foot cramps during tx.  They would contort my legs and my toes would go every which way.  I wasn't even sure if they were tx related, but they sure stopped when I was done with tx.  I never really found a good solution.  I had to sit by the side of my bed and put my foot flat (aches cramped) many a night.  It is temporary!

[merlino]

FLGuy, not ready to inject myself just yet. Didn't get to lab today. Will have to go tomorrow-hopefully walking not crawling.

Friole, hi, Leg cramps took me by surprise. They were on a off for a while. Nothing today. However, round 2 tonight so....

[GrandOak]

I guess now being in the unfortunate class of "Non-Responder" my options become much more limited.  Infergen is not considered an option because it is more a tx for relapsing as studies have shown it to be no more effective for those of us with the nastier spike balls that do not go gently into that good night.

Sounds like only options now are new meds or trials.

[merlino]

No ready for that just yet. I am going to see if the Lab is open on Saturday and go for my first blood work. I have an appt Tues the 7th. Need my second Hep A shot (Oh Joy!)and going to have a quick visit with him. The 4 week is the one he is anxious about. I actually have a little more enery during the day and as bad as my nights have been getting up for work has been better(so far).

[nitramog]

i havent posted much lately but im hear almost  every night,   your nolage has givan me and probly alot of people alot of nolage to fight! with, one day some nut enventar took a moldy orange and cured millions!!!!!