what a day!

[charm27]

Im Tulips! I had problems getting on with tulips so I am charm 27. Now that Im out of work I figured no sense in waiting till X-mas. I had made dr. appt. and went to U of M today. I was told that I couldnt be in trial because I HAD HEP B years ago and cleared it on my own. Trials will not allow you to have had hepB. I dont have it anymore. Im sort of upset doc told be that if I wait for new drugs to come out in approximately 4 years (which was my decision) I could NOT do SOC now. You cannot do SOC now and then if you relapse at some point you cannot take new drugs in 4 years because you would be immuned and it wouldnt work. In addition  thought when your on SOC the virus stops attacking your liver while on treatment he said that is not true.??
Im starting within 2 weeks I have my blue bag and ready to go. )pegasys and riba.
Im disappointed in that I cant do new drugs in 4 years if this doesnt work. SHould I be thinking of this now? I should just take one week at a time right. Thanks guys & Girls!!!! In addition I know I shouldnt be thinking of relapsinf or being a non-responder since I havent even begun yet. Been a helluva day. Your comments would be appreciated. He also gave me paper work to go to the lab for blood work 2 weeks after starting  tx, 4 weeks and then 6. The lab papers say only that I should be tested for CBC nothing mentioned about VL testing. I have such a tension headache.  lol thanks.

[charm27]

In addition they are checking my VL load at 4 weeks, 12, weeks and then at 24 weeks.
Sound ok??????

Thanks ALL!!

[charm27]

please excuse my confusion-that kind of day- to clarify--if within weeks (dont know how many) i dont respond or dont meet criteria and have to stop-then I can do tx with new drugs in 4 years. It was explained if I do 48 or 72 then I CANT do new drugs coming in 2011.
Thanks....

[FlGuy]

I think you got it a little mixed up.  What the doc was saying is that if you do soc now and it's not successful, you may not be able to get into a trial later on.  The reason for this is that some trials have exclusion criteria for anyone who has treated with interferon / riba in the past.  Let's say that you try soc now and it's not successful.  Later on, when new stuff (like vx, for example) you could try that at that time.  This was LJ you met with, right?  If so, he and I had a discussion about the effects of tx on the liver during soc, or during maintenance.  I walked away with a different impression than you.  Good luck

[FlGuy]

Just to clarify.  If you try soc and it's not successful, there is no reason that you could not use teleprevir when it comes on the public market after FDA approval.

[charm27]

i asked him 3 times. I cannot get into trial at all because i HAD HEB. they wont accept me.  Im starting SOC within 2 weeks. If Im lucky to get to 72 weeks he said I CANNOT DO NEW DRUGS (NOT A TRIAL) in 2011. I am arguing right now with a very close friend of mine about this. This is what LJ said ..because you become immuned. I asked him 3 times. If I start SOC now and am not a responder or tx doenst work for me within a couple of months then I have yhe option in 2011 for the new drugs. (NOT A TRIAL)
I feel like Im going nutz but I asked LJ 3x and he explained the same thing 3x.

[FlGuy]

on the VL, if not undetected at week 4 a week 6 and/or 8 would be a nice touch.

[charm27]

he said if I do the SOC for a few months and then it doesnt work then I could start new drugs in 2011.
But the long haul with SOC I cant start new drugs in 2011.

How can I ask him again I asked him 3x????
I feel foolish.

BUT A TRIAL I COULD NEVER BE IN CAUSE I HAD HEB DONT ANYMORE-AND THATS OKAY.
what would you do???

[FlGuy]

I'm heading to Coral Gables right now.  If I bump into him, I'll ask him again.  Not to bug you too much about it, as a stage 2 did he suggest that you treat - did he have a straight forward opinion?

[charm27]

If this is true and you are right and you always are I would be so happy right now I would do spins!!!
But Im 99% sure I didnt misunderstand. Please make my day are you sure????????
Thanks soooooooooooo much.
You dont know how much I appreciate this info.

[FL_Gal]

I don't know half as much as most other people here, but what I would do is go ahead and treat.  How can you become immune to a drug you never took?  Plus, Vertex must not feel that people become immune, because they are doing trials right now with people who previously failed SOC.

FlGal

[FlGuy]

First of all, "If Im lucky to get to 72 weeks".  I'm not so sure that anyone who needs to go to 72 is necessarily lucky.  Did he bring up the prospect of 72?  If so, he probably also gave some parameters, or conditions, that would indicate that 72 was a target.  Did he?

[FlGuy]

I'm just a hepper and no claims to medical knowledge, so don't put much stock in what I say.  The best hep advice came I ever got was from the same person you spoke to today and so far I have followed his instructions, believed what he said and have faith in his knowledge and experience.  He da man, or at least one of them.

[charm27]

he said I could wait however I have a 50% chance if I tx now he would like me to get rid of it if possible..being that I am healthy now with no other health problems. The older you get the more health problems you get and he said thats very important. Very straight forward & real. Im healthy still young. Being Im healthy thats a big plus right now ..e.g. no high bp, diabetes, not overweight etc. This is the 2nd time I saw him. He's the bomb..great guy.

Thank you

[charm27]

yes he said he would like me to do 72 being i have a high VL and being a 1A. He se's sarting me with 1200 riba a day... which is alot for me.  Im 147 lbs 5''8. But he said he wont give me more Riba than that.
Am I on track here??? I do put much sstock in what you say. So you really think I misunderstood?
I feel like a numbnut! I asked 3 times.

If what your saying is true I want to do flips.....
Frustrated now the option of possibly tx again in 2011 if I have to will give me so much hope.

[charm27]

I start txing in 2 weeks pegasys/riba.



tx

[charm27]

He wants to check my VL at 4 weeks, 12 weeks and then 24 weeks. I am told by a dear friend that that is not good.

When you get a chance tell me your opinion.
Im done I dont want to be a pain in the butskie!!!!!
Thanks guy!!

[FlGuy]

I see his point about taking on tx when you don't have other health issues.  He is the knowledgeable person, not me.  Who am I to second guess the person I cast my lot with, and gratefully so. I've written before that I almost appreciated having more liver damage, I did not have to agonize over the decision.  He said start in 90 days, here is what you should take, if this happens do this, if this happens do that.  It was easy for me, just pay attention and do what he said.  In your situation, you have alternatives and decisions which are agonizingly difficult and I feel for you.  Sleep on it, think about it, weigh what you know.
By the way, I really just returned from Coral Gables and I didn't see him.

[charm27]

no rough spots just trying to figure some stuff out that I might have misunderstood.
Thanks

[charm27]

gee you didnt see him tonite...shoot!!!  I thought youd ask him the question I asked you. Well if you see hom tomorrow at the diner  in the morn you can ask him then for me. Thanks.

Do me a flavor please- re: VL checking 4 weeks, 12 & 24 I know I asked you b4 but I asked so many questions you didint get around to answer ths one.

Do you think thats a bad choice 4, 12, &24?? Just your opinion I know.
And if you can possibly find the answer to my original question re: not being able to tx n 2011 after SOC please let me know. I dont want to ask the man for the 4th time. ALthough I will have to if I cant find my answer. Thanks again Guy!! Much Appreciated.I dont mean to be a pain.........

[frijole]

I don't understand what your doc is saying either.  I don't think that failing treatment means an immunity to interferon. I personally (having relapsed) thought the new drugs may be the magic elixor.
I think you should just go ahead and not worry about 2011.  By the time you finish 48, you will be an expert anyway.  There is just too much think time prior to treatment.  Anxiety levels are out the roof.  Believe me, it settles down once you start.

As far as the viral load test, I think a lot depends upon what your insurance will pay.  FL said,
"on the VL, if not undetected at week 4 a week 6 and/or 8 would be a nice touch"  You have asked him 2 times since this post the same thing.  It means what it means.  If you don't clear at week 4, try to get another test at 6.

The other thing I don't see addressed here is the sensitivity of the testing.  Request very sensitive tests by name.  My doctor thought a sensative test was <50.  NOT.  Find out what lab you will be using and find out what the most sensitive test available is ----- for example, Heptimax for Quest ( to <5) and Quanta Sure for LabCorp (<2).

good luck, frijole

[charm27]

Thanks much for your reply. Very helpful.

Have a great day.


P.S:: Aldo thanks for answering question of VL. I know I had asked Fl?guy same question twice=my mistake didint see his reply. Again...thanks.

[PSP-n-Me]

hmmmm your doc said new drugs in 2011 - that's what mine said too - I wonder why people seem to think 2009 - Interesting

I have a question - why did he recommend 72 weeks if you haven't even started tx yet?  Is that the new protocol for high viral load?  Also, you're not overweight and under 150 pounds so why so much riba?  I don't like telling people what to do but I have to say riba is one nasty drug, if I were you I would question his reasons for the high dose..I see my liver Doc on Wednesday and I will ask her why he would say you are not eligible for any Interferon based meds if you fail SOC, I have never heard that before...

It's scary when you start treatment and things start changing in your body - but it sems you have got a good amount of information on here about the sides and what to expect...Best of luck to you - In my opinion the most difficult thing for you will be to do it while living alone - I could never do it if I didn't have such a wonderful caregiver...

PS: I am very happy with your choice to treat this demon while you're still young and healthy enough to - Kudos to you girl!

*dip*

[Trish77]

A question regarding your Hep B.  You say you cleared it by yourself...do you mean that you got better all on your own with no treatment?  I also got Hep B, back in late 70's.  Mild case, abdominal pains and mild jaundice my only real symptoms, I was lucky.  Mine also turned out to be non-contagious and makes me immune, determined by the properties of the antibodies I have.  Thankfully, I was told then that I can't ever give blood and never have... or I would have many times over and my Hep C would have come in about that time also or in 1984 with the blood transfusion.  

Anyway...the antibodies remain in my blood permanently even though I don't have any illness from Hep B and never will and won't ever require treatment.  Perhaps this is your situation and perhaps, if it truly does preclude you from the trials.. this is why?

Good luck to you.... it's alot of information to take in and alot of factors to weigh.  I have my biopsy Monday and I've been weighing my own factors and it's a rollercoaster ride... just stay buckled in and hang on....rooting for you.

[charm27]

oh thank you so much for asking your doc. Thats very kind of you. I have NEVER heard of that before either. 72 weeks is an option for me if I have to go that route. As far as Riba I told him I would like to treat this aggressively if possible.....he agreed 1200 and I will stay on that thru tx.
If tx doesnt work or cant continue I will be eligible for SOC in 2011. If I go 48 or 72 he said I cant. Questioned it 3 times. Got the same answer. Very confusing. As Friole said I will worry about it in 2011. First things first. ( From what I gather some people have had luck double dosing) I am not that educated to speak about that.

Thanks so for your good wishes.