Another "Can I live w/o treatment topic?"

[leigh]

I agree with Relay, why not check out the trials? Nothing ventured, nothing gained...

Knowledge is power, so keep reading, keep asking questions and get to know the enemy better. Here he is: 

greyrocker

good advice,i got given a hectic schedule of tx at my first visit to the G.I today aswell as finding out my g.p got my bloods mixed up but it didnt put me off going for tx-so go for it 

[hburgart]

I haven't heard anything from the clinical trials department and I've been waiting two weeks. Someone posted that things move slowly in the HCV world.....

[keith]

Very slow!!!

[sunny2day]

Things work slowly in the pharmaceutical world in general.  They're testing for efficacy as well as safety and it takes time to get the data.  Fast-tracking drugs has led to serious problems, better for them to take the time to get it right..... 

[hburgart]

Clinical trials nurse says I'm in the works for consideration in three different trials. I'll hear more about them in a month or so. Hopefully they are all Phase 3, no side effects, miracle cure type stuff.

[hburgart]

Anybody familiar with Merck 2nd genertaion inhibitor MK5172, targets the MS34 molecule, clinical trial in combination with ribavarin but without interferon? Or, Gilead GS5885, targets NS5A molecule, clinical trial in combo with ribavarin and w/o interferon? Has anyone out there guided their treatment with IL288, subtype CC genotype test? Would seem reasonable to put up with standard of care if someone were lucky enough to be made of this. Is telaprevir more effective than boceprevir?  Finally, any thoughts on conditioning or training before treatment?

[runningbrit]

Anybody familiar with Merck 2nd genertaion inhibitor MK5172, targets the MS34 molecule, clinical trial in combination with ribavarin but without interferon? Or, Gilead GS5885, targets NS5A molecule, clinical trial in combo with ribavarin and w/o interferon? Has anyone out there guided their treatment with IL288, subtype CC genotype test? Would seem reasonable to put up with standard of care if someone were lucky enough to be made of this. Is telaprevir more effective than boceprevir?  Finally, any thoughts on conditioning or training before treatment?

I am in Gilead trial.   GS5885 once a day (a direct acting antiviral, NS5A), plus PEG/RBV, plus or minus (ie placebo) the protease inhibitor GS9451).   Phase IIB.  No rescue drugs.  I have been on it for 10 weeks.   Viral load went from 550,000 to <25 first week.   UND at week 4 and since.   Side effects have been a very quick drop in HGB (13.5 to 8.5 first week) which resulted in a reduced dose of PEG/RBV.   HGB went up to 9.7 after reduced dose and two weeks ago  was 9.3).  Most side effects I think are from PEG/RBV.   Let me know if you have any questions.   So far no nausea, vomiting or rash. I do not have to eat fat and I take meds twice a day.  Have gained 5lb mainly because I am too weak to exercise energetically every day.   I get my meds with no hassle.   Full physical to start (you gotta be healthy! and no drugs) and then tested weeks 1,2, 4 every two weeks till 12 then every month.

Let me know if you have questions.
Lynda

[relay]

Excellent post on previous page by Adn Thanks 

[hburgart]

Thanks runningbrit for the feedback. Hope you do well in your treatment.

[ScaredyCat]

That was a great post adn57.  Every one of those questions is of major importance. If you have someone to go with you hburgart that would be great.  I drove 3.5 hours each way for sonogram, biopsy, various medical blood draws, 1,2,3,4,6,8,12 week tests and a bunch of eye tests which were unnecessary.  I had dry eyelids for crissake.  But, now, I am very familiar with the inside of my eyeball and have the photos to prove it.  If it wasn't for the drive I would been so happy about the eye part.

Also, usually clinics operate only on certain days even in a hospital setting.

The first part -this is not necessarily about you but about their drug is major.  Still, some clinical trials are doing quite well with results\ and low side effects.

hburgart -are you looking at clinicaltrials.gov?

I am waiting for something new. Stage 0/1 when I treated last year.  I just want to do something for 12 weeks. 

But you never know - I may just jump in there and get it over with if I can.
This ain't living.
ScaredyCat

[hburgart]

ScaredyCat - I don't blame you a bit and thanks for the post info.. I read you're waiting for something new. What did you treat with initially? I have seen clinicaltrials.gov. Thanks.

[Janet L]

Hard question, hburgart, one that only you can answer.  I waited 16 yrs for this triple treatment and if my liver disease had not progressed 2 stages in 5 yrs I would still be waiting for the new drugs on the horizon.  This forum is awesome for information so what ever you decide to do, stick around for breaking news.

[bbair1244]

Started Inter and ribi 5 weeks ago.  Viral count went to 0 in 4 weeks.  But started on Boceprivir Friday and I feel like I'm dyiing.  I know I cannot do this for 24 weeks.  Sides are too rough.  I'm just trying to figure out if I should continue the Int/ribi or just stop them all.

[rwe1949]

Bb
   This will pass. I have felt your pain. I am in my 18week and I know it will get better. Please hang in there we will be there for support. Just take it one day at a time. SVR is something we are all working for. Please don't give up
Rick

[DavidM55]

BB

Sorry you are having a tough time with the sides, but good that you are UND at 4 weeks.
Hang in there..you can whip this dragon. one day at a time.

What are the sides and what are you taking to relieve them?

You might want to start a new topic in Lord and Ladies (Support and Encouragement) forum.

Good Luck