My Story

[Imagine]

My Story --------
Hello again,
Some of you

[MyLab]

I'm sorry about your relapse.  My first round of treatment did not work, but the second (18 months of hell) seems to have worked.  Hang in there.  It is scarey!

I'm wondering what the chances are of relapsing after 3 years?  Has anyone out there relapsed after such a long period of time.

[friole]

My viral load at week 12 was 40 and I really did not seriously think about treating until someone came on and posted (jeralice I think) who had a vl of 40 at week 12 and relaped.

Duh - just want to correct my statement -- did not consider EXTENDING not treating -- until Jeralice posted of her relapse!

[Alady1620]

I am sorry to hear you have relapsed.  It sounds to me like you are handling it well.  Stay strong.

[Imagine]

Thank you for your support and input.

Bobby I hope you get good news soon. I understand the way you feel. I am not in a rush to retreat, I am giving myself time to recover and make the most informed decision as I can.

GrandOak, yes I do have options for retreating and I did respond very well to the standard combo for that I am grateful. There is always those worse off than ourselves. Sometimes you have to look hard for the siver linings. I uh LOL appreciate the vote of confidence in my insane thinking, hahaha

Thank you Alady!

[Imagine]

Hey DD,

More Riba?????????? LOL
I am 6'1" and weighed 185 lbs pre tx, I lost 32 lbs during tx. My riba dosage was 1200mg per day and I took it for 53 wks. I became anemic at the tenth month stage and had to do aranesp injections the last two months. For me the riba was the hardest part of tx and I know I could not have handled more than 1200mg per day. I weigh 175 now(well that was before the holidays). I will keep you posted on my trek.

[friole]

If I had had a PCR that went to 50 I too would have had a UND and thought I was in good shape.  I think everyone should have the most sensitive test available at week 12.  My viral load at week 12 was 40 and I really did not seriously think about treating until someone came on and posted (jeralice I think) who had a vl of 40 at week 12 and relaped.  Even though I did 36 weeks after I had a sensitive test I still relapsed.

The sensitive PCRs are more expensive but they all cost me the same thru my insurance copay.  My doctor said the insurance co would not pay but that was not fact.  They have paid each time.  CHeck with your insurance co.  Mine said whatever the doctor thought I needed would be paid for - so my doctor let me chose the test.
frijole

[beamishboy]

now,don't take 'just' my word for it...i am less than a great speller.....but anyways-it is drug developed to control severe dirreah (what did i tellya?-my spellin reeks) and has been found to attack hep-c (esp. in intestines,go figure...) drug co. name is romark- i believe,no notes in front of me..tho much discussed here in archives.....combo-trx w/ peg&riba are ongoing and some are using alina alone with results,but nothing absolute as of yet....GoodLuck trackin this down-what's your status??

[ladhill]

Hi! I am really sorry to hear about your relapse. It would be so wonderful if you could get the VX-950. Do you have any idea what the chances are? I have tried to get some info on the net and asked my pcp - and got no where. I was dx a couple months ago and will see the dr for the first time on friday. I am hoping hoping that I can get the vx 950 - I have genotype 1a. What is pcr?

[Imagine]

Good to see you as well Scott!
Yes I have come to terms with it even though at this point in time it seems it's an open end contract :). Well you may have interferon induced madness but I see you are still here helping people Scott.

Happy New Year to you buddy!

[Imagine]

Wow, your fifth treatment! I so hope this one does the trick for you. You may not be able to contemplate 72 wks of tx but doing five treatments is hard for me to imagine. Your persistance is very admirable.

[ladhill]

what is alina

[DoubleDose]

I am sorry to hear your outcome.  What was your weight during tx, and how much Ribavirin did you do, and for how long?  Was your planned 72 weeks due to being Stage 3 and having a 40 million VL?  Sometimes the super-responder protocol does not work, and I think that in most cases, if the original tx is redone, and extended for a long enough period of time, the SVR will be a likely result.  I do not personally agree with your doctor's assessment of your odds of SVR on retreatment for 72 weeks.  IF you respond again, before 12 weeks (by super sensitive PCR), then I believe that going 72 weeks total will give you a very high chance of SVR.  You may need to use more Ribavirin, depending on how your body metabolizes the drug.  If you did not become very to severely anemic, then you may not have been doing enough Riba...even though the weight adjusted dosage appeared to be correct.  I also disagree that doing daily Infergen for less than 72 weeks will provide the SVR any better than doing a Peg-Inf. for the same period of time.  Its all about staying undetected on tx for a long enough period of time, along with highly therapeutic doses of Ribavirin.  The Riba really plays a great role in preventing the relapse.

Let us know what your next steps will involve, when you get to that point.  Also, please let me know your reply to the initial questions.  Good Luck!

DoubleDose

[Imagine]

The sensitivity of all my pcr's were 50u. I know it goes down to 10 I believe. It makes you wonder why 10 is not the standard but since they are more expensive providers and insurance may not cover the additional expense even though in cases like mine they would save a ton of money in the long run. I'm not sure it would have made a difference but you would think the more accurate the better.

Yes my first post pcr was due in December @ 6 months post tx. This is the standard protocol where I was treated.

Yes friole the 72 wks at the beginning was due to my high VL and being stg3. Even though this is not FDA approved some doctors are doing this in cases where the vl is very high and 1a.

[beamishboy]

sorry to hear about your relapse...i also had my post-trx pcr early and am waiting on results....the question of-"what now?" is dramatically changing what with 'new&improved" options...maybe a combo including alina ?..GOODLUCK & please keep posting your research findings&decision

[Imagine]

Sorry you never cleared. Each one of us need to analyze our own situations and make decisions based (hopefully) on good information from our doctors and research we do on our own. As you can see from this thread there is not a generic solution that can be applied to all. Stage is a very strong factor in making a choice. Let me know how your bx turns out.

[Imagine]

I hear ya chcnme! I laughed at your comment about knocking the snot out of the virus as I have had a bad sinus infection the last three weeks :)

[bobbyullc]

really sorry to hear this. you made the normal desision to stop early but it did not pan out. personnally i am stage 3, just completed tx 6 months ago and hope to get my pcr results tomorrow.
but, if it is positive i will choose to wait 1 year to see how vx and other drugs look before considering tx'ing again. i do not want to spend the last years of my life on the couch missing out on living on such a slim chance of svr when new drugs are so close. that is my opinion and i am sticking to it.

good luck,
bobby

[Imagine]

Your husband has been through a long tough road. You must be proud of him and he you for your support in helping him through it. I hope the very best for you two. I am thinking zero's for you.

Yes the tx stops or slows down the liver damage and I know I benefited from that.

I hope for a very clear year for you guys in 07
Imagine

[Imagine]

Man that's an intense wait for your post 6 month post pcr. I hope you hear good news soon. At least new options are becoming increasingly promising in effectiveness. Let's keep our fingers crossed.

[Imagine]

I have no idea what my chances of getting into Vertex Prove3 trials are. If I was to analyze it I would probably get very depressed. First your Doc would be the first key as you would need to get a referral into the facility administering the trial. You then must meet certain criteria to be "accepted" into the study. Then there is the study group size. If you need to relocate if there is no institute conducting a trial in your area adds an unknown into the equation. So if I was just considering my chances of getting in one I would say they are low. All I can do is try and satisfy the requirements and see what happens (kind of sounds like tx doesn't it). PCR is the blood test that measures your viral load. It is done seperately from your CBC bloodwork and costs a lot more too!
Take Care

[GrandOak]

Sorry to hear of your relapse.  But look at the bright side, as a responder you still have the option to re-treat.  When I got yanked in Nov after 10 months of battling the dragon through the fog and severe anemia, I was told that re-treating was not even an option for me.

Given my experience, I can understand completely where you are coming from and perhaps it's a sign of my own insanity, but your train of thought seems perfectly logical to me.

[HCA]

As a geno 1a/1b relapser after 48 weeks tx myself I can both sympathise and empathise.The difference is that I had detectable viral serum of 550 or so at 12 weeks.I always kind of expected to relapse and when it happened I wasn't too stressed.
Your case is crueller being a super responder and all,but I suppose it's just another smash in the teeth.
I'm already eight weeks in to another treament (my fifth,if you please) with a six week pcr of 29.
I can't contemplate 72 weeks treatment-I will have done two lots of 48 and three lots of approx.24 by the end of the current treatment,at and at my age,56,the quality of life equation starts to look a bit odd.How many of my few remaining good years do I want to sacrifice on the altar of treament?
I do wish the mechanics and kinetics of realapse were better understood.
Best wishes to you in any event-I'm sure you'll finally bust it with an inhibitor added to the combo!

[Better_Angels]

Hi:

My husband was a relapser as well (1B) but didn't relapse until 1 year post treatment. He was stage 3/4, VL 9.2 Million. He was undetectable at day 18, his PCR's were sensitive down to 50, so who knows..?

His second treatment was Infergen, 15 mcg's daily for 6 months and then every other day for the last 24 weeks. He finished that treatment in May and was undetectable at 26 weeks post treatment. Of course we're hopeful, but won't consider him SVR until 52 weeks post treatment, and even then anxiety will probably remain on the menu for some time to come.

Though 2 rounds of treatment were incredibly tough, he did benefit from improved liver histology; after 2 treatments his biopsy results show him now at 2/3, "mostly 2" according to his doctor.

Best of luck to you in whatever path you take, it's a tough decision.

Debbe

[chcnme]

Hey!  You old timer, you :)  lol

If you can ANY way get in the VX nonresponder (PROVE3, or whatever it's named - I've kind of lost track), I say go for it.  I say go for it with all you've got!  I hope your doc can help you pronto with a referral to wherever is BEST for you to treat with the VX.  I think it's the best thing going right now by far, and I think (just have a gut feeling) that the folks who have treated so far in trials are going to KEEP receiving good news, and I think (I hope) nonresponders will be getting the RVR as good as the tx naives did and will ... knock the snot outta that virus very early on.  

Maintenance?  Infergen?  Gosh - I just don't know that much about them;  I only know I HOPE you can get in the VX.  Best of luck!