Just found out I am TT

[slideman]

My Dr did not do the il28b test pretreatment. I insisted on it and today I find out I am tt. Had I known that I would never have started all this. Now in wk 17. Whats the point to go on?

[SunShineGirlie]

I agree that Incevik drug is very hard on us, but it seems to be doing it's job.  Hang in there - Sunny

[slideman]

I have not had it checked since wk 12. I wish I could though!! I am of the opinion that for now I am treating from vl test to vl test. If I forcast much past that, I freak out and want to quit. Although I do seem to be doing a little better lately. My red counts have droped back to 10.4 from 12.2 at the end of inc. That *****!! Int is no picnic!!

[SunShineGirlie]

I am a TT and just got my 12 week PCR - negative.  I think the TT  is not the best responder to Interferon alone without the PI - You said you were in week 17 have you had a PCR since you stopped the PI? - Sunny

[Lifenet62]

Keep the faith we are all behind you and standing along side of you!!!!!

[susan400]

I had a second one drawn back on 9/28/11 because the trial site screwed up when they drew the first one at the beginning of the trial.  The trial is over now, but it was a paid for lab and since it was basically, their error, they redrew it.  But, the study nurse told me that they are still waiting for the results for me on this test, and also for another pt that was in the same trial as I was.  I'm like, this is a bit ridiculous having to wait so long for the elusive results to this test.  I am 99% sure that I will come back as a TT, but it would be nice to know...  Susan400

[TripleCrown]

I am also tt and responding very well to tx. Try not to worry about it and stay with the program.
Best of luck.

[Gizmo103]

Slideman,
The job thing is a tough one for sure, especially with the current economic situation. I know from a man's perspective that is a hard pill to swallow. But as a woman and a wife, Sherry is absolutely spot on. Grand shceme, your family wants their father and husband healthy first.

Have you ever read stories from people who have beat this - achieved SVR? They go on how good they feel, how much more energy they have and how more sharp their mind is. That it is more than what they expected it would be. Ive seen stories like that on HCVadvocate.org. Maybe some in this forum could share their experience?

Unemployment dropped slighly last week. Hopefully the employment picture will continue to get better. Somehow it usually does durning an election year. Things have the possibility of being better when your off this treatment. Now is the time to take care of you. This is what you are suppose to be doing.

Hang in there, let's beat this!
Cindy

[scoleman]

I too had no idea of my IL28 genotype prior to treatment.  I had my doctor order the test while I was treating but was told my insurance wouldn't cover the cost so we cancelled it.  I agree with what's been posted by others, the PI is doing the heavy lifting in clearing the virus and is working spectacularly for you.  I want to encourage you to stay committed for the 48 weeks of treatment get your best chances at SVR.  It is hard, I know.

I think that in the grand scheme of life, your family would prefer you to clear the HCV than to have a little extra money.  Treatment is temporary, maybe not as temporary as we'd like on hard days but on those days all we can do is persevere.  

Hang in there,
Sherry

[slideman]

I think the most frustrating thing for me is the brain fog. The causes for this are very brutal as well, but the actual not being mentaly sharp is counter productive in every aspect of my life. For example I have an oportunity to take a better job. Way more money and all that comes with a better job, but I know I am not capable of doing the job I could have done 6 months ago. I also know that there will not be a second chance with a new employer, one that doesnt know me personally, and how good at my job I used to be.
I feel like all this has cost my family and I so much, and every time I turn around it has bit me on the rear again!! Now the whole TT thing. That frustrates me as I should have known that ahead of time. I might have elected to do tx anyway.....but still, I feel like part of my choice to treat myself was influenced by a lack of information. Information that was easily obtainable and not provided by my health providor untill I learned about it on here, and I insisted on the test. I am so happy to hear all the positive things you guys have to share, it really does help, and I hope you all know how much all of you mean to us in my house.
How can we educate people prior to tx? I know there are Dr's out there that are exellent, we see that here everyday. However I also see a lot of bad advice coming from Dr's that should not be treating us. Its a shame its not on the side of busses or something...... can you invision what I am driving at? (no pun intended) signs that inform people to look on these sites and learn for yourself before your tx is not all it could be, had you been handed the info that is available but not allways presented.

[Gizmo103]

Slideman - I hear you. I barely have an appetite, I'm starting to develop the rash everyone talks about, my hips ache so bad somedays it brings me to tears, my hair is falling out and I've got a horrible cough. So I really hear you, this is brutal. It's been much harder than the first time I was on treatment and I though that was bad.

But I want rid of this, I want these little monsters out of my body, I want to stop feeling like I'm a walking biohazard. It's okay that you hate this treatment sometimes. My husband wakes me up on the weekends at 6:30 to take the meds after I've done the shot and I just want to hurtle a shoe at him. I don't do that by the way. :) we are going to have those thoughts of throwing in the towel, is it really worth it... That's the meds and our minds messing with us. Of course we want the best odds, but life rarely seems to be just right. However, at least you and I are in a country where we at least have access to the best drugs available. We r the lucky ones.

So take the good moments and try to right yourself, spent time with family, watch comedies, whatever it is that makes you feel like "good" you again. We know there are going to be bad times right. They are there to be had. But let's get through this! Mind over matter. Try and focus on the positives we do have, don't beat ourselves up when we slide a little - stay strong with me! You're not alone.

[frijole]

slideman
I can't add any more to what everyone else says, but I like the tough guy analagy.  We will get through this.  With the UND at week 4 I think you are in a superior position.  

What are you worst side effects?  Is it the anemia?  Are you getting any relief (resuce drugs) for that?  Rash?

frijole

[flcyclist]

But some days I'm really not that tough.
---------------------------------------------------------------
These are very tough medications to tolerate and you certainly aren't alone in how you're feeling.  Keep and positive attitude and you'll get through this.  We can do it.

[slideman]

Thanks Man.
That is very encourageing. I'm giving it hell. The sides are almost more than I can do somedays, and I'm not a week person by any means. I keep telling myself I was a tough guy when I got this, now I have to be a tough guy to get rid of it. But some days I'm really not that tough.

[Gizmo103]

Slideman, I would loved to have a 73% odds can-do-man is quoting. And if you were undetectable at 4 weeks after incorporating Incivek into the mix, that's even better. Your first treatment was so inferior to what your on now. Stay strong!

BTW - I relapsed with the old SOC too. I don't know if I'm a TT for sure but chances are I probably am. Today I found out that I too am undetectable at 4 weeks with Incivek this time around. And I'm excited, I feel good! Stay strong and positive with me slideman! Let's get through this!!

[HectorSF]

Viral kinetics overrides IL28B results. IL28B is only a predictor. It doesn't tell what is actually going to happen. The true test is how your viral load responded to treatment. And you responded as best as anyone can.eRVR.
So all looks good. Keep doing what you are doing and you will be SVR!

Doing 48 weeks is probably a good idea as it is the mutants that are being suppressed by the interferon now and IL28B shows how easily the interferon can suppress the mutants in your body. They will be what comes back if you don't treat long enough and have a relapse.

Hector

[Juttutin]

One of the great bits of news coming out of Pharmasset is that the traditional success markers seem to be entirely meaningless for their all-oral regimens, so know at least that if it doesn't work, an alternative with better odds is just around the corner.

[working dog]

good luck slideman.....i'll bet you do fine...i'm like a punk ball at 17 weeks its killing me but i'm trying to stay with the program...adjusting a few times....billy

[slideman]

Thanks for the encouragement!! My prior tx was before they had developed the long lasting pegulated interferon. 5 months of it were the 3 times a week injection. When the newer int came out I was switched to it. I did not receive vl testing until 7 months in. They found virus, so I doubled int injections. 3 months later I quit. It was too much to handle!! Went from 235lb construction worker to 180lb crumb. Then 2 wks later my blood was und. Si I went back to tx. Virus returned and I gave up. So now here we are again. Should have been tested for TT before tx probably, but was not. I was told 24 wks, then 10 wks in the Dr said 48. I dont think I can make 48, but 24 is coming up.

[nygirl7]

Dont take it so hard slideman I was probably a TT and had to treat for 72 but we didn't even know of a test like this back then and we had no PIs.  You still are leagues ahead of where we were only a few years ago in regard to treatment success rates.

[can-do-man]

" but i was an eRVR and that seems to trump alot."

That was the second time i treated with a PI included, i'm now SVR

[willbb]

Most eRVR patients achieved SVR to telaprevir with PR in all allele groups: CC at 95%, CT at 92%, and TT at 80%, Dr. Jacobson said. Patients with the CT and TT alleles who did not achieve eRVR had lower SVR rates than CC patients.


Thats is naives,,however with the eRVR  your chances look very good
Best to you  ..
Will

[can-do-man]

Being your a TT is probably one of the reasons your prior tx did not work, when you say a mess i'm not sure what you mean.......... How long are you treating this time???

My first treatment was also a failure do to being cirrhotic, never knew if i was a CC CT or TT, but i was an eRVR and that seems to trump alot.

[can-do-man]

"While your odds are lower, Im fairly certain they are still better than the previous SOC so don't give up hope!"

However, patients harboring the T allele also benefited from the addition of telaprevir in terms of overall response rates, since such patients receiving the control regimen had SVR rates of only 23% to 25%. Indeed, the largest relative benefit of telaprevir-based therapy was observed in these patients with difficult-to-treat infections.

From 23% to 73%, yeah i would say the odds are better.

[slideman]

Are those #'s based on treatment nieve? My prior tx was a mess and did not work.