post 3mth results not good :O(

[kcrandy]

well here i go. my hepc has come back!  my vl is 20500 ( quantitative ), my iu load is 4,3 whatever that means.  my ast is 12.5.  i was a good responder was und at 12 weeks,  i was diagnosed at 4 right side and 5 left side fibrosis of my liver biopsy. i treated for 56 weeks til my body just could not take anymore.  i know i did all i could to beat this thing.
i asked the np at the va hosp i go to and she said i was not able to get anymore tx because i am cosidered a non responder.  i will not give in to that statement.  i know there are tx coming up that might work for me later on.  i just hope my liver does not give up b4 i do. :O)  
i do want to know if anyone has heard of anything that can narrow down the time frame of when the hep c started i.e.
pathology and or genology. you would think that with all the science today there would be a way to say how long the virus has been at work in persons body.  i will be filing a disability with the veterans admin.believing i got this virus in 1975.  i am not sure what my prognosis is but i will not give up: and i d@mn sure wont take  i can not get tx again from va hosp.  
would like to hear from all with some advice as to what i should do and some advice as how to proceed.
i do want to say to those of you who are new to tx or are going thru tx  "DONT GIVE UP"!
as all have seen each of us have different results from tx, sides, etc.  this virus is beatable as you see from reading and seeing all the people who have beaten this virus.
i will still be hanging around the group to keep all informed of how it goes with me. :O)


p.s.  LL i guess i am going to have to put that fat boy on hold for now!  :O)

[kcrandy]

thanks you all!  

i would be interested in the study.  i agree that i should recoupe for a little while but i will not give up. :O)  i have heard that the inhibitors could be available by the end of the year or into 2009.  the va has said that when the drugs are approved they will be able to treat me again.  as you said mike if there is a study comung up i would take a look at it.
also congrats on the six mth und.  when i get that und at 6 mths the steaks are on me,
( outback steak house of course ). :O.

as i said before i get my strength form each and everyone in this group. thank you!


p.s.  has anyone heard or know were that rascially rabbit jmjm is at, have not seen him around, hope he is all right and doing well.

[Deb_c430]

Doesn't matter if you are still serving, VA hospital is part of your benefits!   I feel very strongly about this subject!  

They are taking away benefits all the time, and  will continue to until  Vets step up and make some noise!

I hope it works out,  rest and weighing through options is important.  


I know the word relapse after treating for so long is one of the hardest things I ever had to hear!   But hang in there!  

Where there is a will there is a way.

Deb

[kcmike]

Sorry to hear the results.  I wanted to let you know that a Dr. Freilich is opening a Schering-Plough clinical study here in kc.  Not sure about the doctors spelling, will get more info for you if your interested.  It includes their PI along with SOC.  
Also, I got my 6 month post tx PCR and I was undetected.  I still feel some sx.  The worst of which is I still can't get enough sleep.  I have to have 8 hours per day.  On weekends without an alarm I can go for 12-13 hours.  
Best of luck!  We all need it in this game!
kcmike

[kcrandy]

thanks.

yes i will let my body rest for the next battle.lol
i will be watching for the next new drugs as well.  i do hear the protease inhibitors are promising as well.

[tahoeunicorn]

This is a med that my gastro had mentioned that is being study and will possibly available in Dec. I haven't been able to find out much on this med other than it is an Anti-viral drug that actually is suppose to attack the virus to stop the reproduction of the virus. I am still doing some research on this.  I did find a report in the most viewed health reports in the Hep C Pipeline pages. My gastro did say that this tx is being looked at for relapser and non-responders (I'm Non-Responder but you have to be a relapser, I was never UND.)

Has any one heard of using zalcitabine( which is a protease inhibator I believe) along with the Riba and Peg. They are suppose to be doing a study using the three drugs for 12 weeks, then dropping to just the Riba and Peg for another 12 weeks for a total TX of 6 months.

I am really sorry to hear of the relapse. take time and let your body rest and gather some strength to take on the next battle.

Lynn

[kcrandy]

thank you.

there is one thing i would like to know.  does anyone know exactly what drugs are fda approved for tx of hep c, and or is fda approved and could be used for hep c but is prescribed for treatment for some other disease.  and what is going to be fda approved in the very near future.  

as long as it is fda approved va can use the drug for tx. of hep c. they dont like doing that but they will.

anyway everyone thanks for your support and believe me when i say it is the support you all give to everyone in this forum thats helps me to have a good attitude and outlook.

THANK YOU!  :O)

[Forseegood]

so sorry to hear of this..well, you did a long time, that'll hold you in good stead till they have some better things to throw at it, or till you treat again...best of luck to you, I really enjoy your posts, and I could take a thing or two from your attitude...

[kcrandy]

i totally agree with all of you.  the hep spec is not in town this week but i will be speaking with him the following week for sure.

zazaa.  my vl was 13,700,000 pre/tx.  35,600 at four weeks and und by 12th week.  i know as all do i am a very good responder considering my liver status.  that is why i am not giving up.  and you can bet that va will not like it much but they do
( as stated by deb ) have to tx., and all those options are available to me.

ny, you are right va does have studies for hep c tx, and i will be looking at that option as well.  the company i work for is really responsive to my tx and they would be more than willing to place me back on their insurance.  that is another option, but less likely due to being out of pocket more than i would at va hosp.  

deb, i am not active service anymore but you are right va does have to tx me as they did this first time.  i just have to navigate thru the people like the np who does not have a clue to get the right things done.

thak you all for your support.  i always remember the old adage that whatever does'nt kill us makes us stronger. believe me when i say that everyones support in this forum is and will remain to make me stronger.  my faith is what makes me whole.  : O )

[Deb_c430]

Totally agrees with zazza and NY,  Have you filed a complaint to VA about this?   With all things from the forum alone ie zazaa and ny you might have a case!

I would also tell them you want to speak to her Commander,  this may or may not help.  

But I would def lodge a complaint!  Va is under a heat right now,  sounds like they are trying push you off to the side.   I would also notify Sgts assoc if you were enlisted, of  a va  help group!  I think you have a case,

I know the emphasise is on the guys coming home from the war, beleive I spent a lot time at Walter Reed,     I saw those guys,  they deserve the help, but that DOES NOT MEAN YOU DO NOT!  You served.

I am also so sorry

Deb

[nygirl7]

I agree with Zazza how in the world can she say NON-RESPONDER when you were UND at week 12 and stayed that way for like 60 weeks or whatever and didn't RELAPSE until after treatment!  What an IDIOT!!!

Can you talk to an actual doctor about this?  If they deny you the meds perhaps you can get them to just do the physical part and get Pegassist or Pegasys to pay for the meds.

Also wouldn't you be eligible for some of the studies that pay for everything?

I'M SO SORRY FOR YOUR NEWS.

[zazza]

"my vl is 20500 ( quantitative ), my iu load is 4,3 whatever that means"

Your viral load is 20'500 IU/ml or expressed in log10 form: log IU/ml 4.3

This is a very low viral load. How far post tx are you? What was your viral load pre tx?

[zazza]

NON-RESPONDER?????????????????????????

This lady does not know what she is talking about. You are a relapser, not a non-responder! You were UND by week 12 and then relapsed post tx, that is a relapser. You responded to the drugs but relapsed. What is it she does not understand?

As a relapser, you are a very good candidate for success once the protease inhibitors are approved. I only see one possible result for you in the future and that is SVR!

Don't let them convince you of anything else.

Sorry you did not beat the virus this time, but you will the next!

Best wishes,
Zazza

[kcrandy]

thank you/
well at least i am not to the disabled point as of yet i still am able to work full time.  
i asked my company to take me off of there insurance because of va i guess i will ask them to put me back on soon. :O)  i agree about soc med as you can see.  its ironic that when i asked the np at va she said i would not be able to do a study because
"i am not a naive treater".  this from the people that said i could not get tx in the first place.  i will put all ducks in order and shoot from the hip to make va regret that statement.  i also asked about being placed on a transplant list and was told that i would not have a high enough meld score at this time to be placed on a list.  as you can see i have my work cut out for me right now but i am a fighter.  i will try to deal with va on their level at this time, and do as you suggested and look for other avenues of tx.

[merryBe]

first to say how sorry....it required a few expltives @%$@#@ @@$# ANd @%$

I don't have any advise, unless you might do what we had to do...since you cannot treat with VA again....yeah, doesn''t that make us all want to see medicine socialized...not.

we had to fold our business and my hubby got a state job.
Ironic, after 30 years of self employment, but the only way to get insurance that wasn't prohibitive was for one of us to work for the state.

Most state have better than average health benefits for all their employees....(after all the tax payer pays for it as well as their own) ....there are literally dozens of jobs retirees can do, from library assistant to school bus driver to who knows what...depends on your skill set.  Insurance rates in our county vary from 100-300 a month total premium dependant on whether you work a 4,6 or 8 hour shift.
If you need a rest....you may want to try school bus driver, as you drive 3 hrs, rest (go home to rest) for 4, and then drive for 3 again.  It's a good job for someone with HepC who needs rest time.

anyway, that's the only thing I can think of that might help.
I think also, I'd find out what trials are in the area...and keep calling to see...and also,
don't rule out the transplant list...at some point, some hope is better than none.
a prayer for you.
MaryB