Saw The Doc - Have Some Answers

[FlGuy]

Went to see doc#3, one of those

[Kalio1]

Thanks for the info, veddy interestink! Also helpful and right in line with what my doc said up to the VX option part. Wish I had known I had cirrhosis when I first txed but water under the proverbial bridge now. Going to the beach a few days, now THAT is good therapy! I know you wi et us know whe you decide what you will do. So glad to hear how it went but who did he say is "the best"??

PS what did he say anything about smoking?

[roaming]

Good morning, I am in orl. So do I understand that you wont actually be treating at the university but the university will coordinate treatment with your doctor?

[NYgirl]

That doctor I went to told me the MOST important and good thing about my treatment was that I never had any dose reductions, as hard as it was it was CRUCIAL.

I only did that with all the hemo problems because of the advice in here. Glad I listened.

What do yOU think you will do?  These days it really DOES look to me like the doctors (the forward thinking ones) are right and geno 2 and 3 should go longer than the 24 weeks. Maybe because they spent so much time studying the 1s they really don't have a good handle on the 2s and 3s and based the 24 on some "study" that had invalid data or something?

[FlGuy]

While I was there he dictated the 'consultation notes' to my tx doc.  In prior conversation with the tx doc he said he'd follow directions.  These two docs have done this before so if it's re-combo, just a matter of all the rx's and getting lined up with the ins. co.  Insurance wont't cover charges with the Univ doc so this was a one-time event.

[Mister beagle bailey]

Have been waiting to hear from you, then I remembered that you didn't have your PC at the condo.  A lot od good info and glad you went.  Bet you had a great week-end at Hutch.

So who is the best hep doc?

Beagle

[FlGuy]

I didn't ask about the smoking.  But I think we know the answer to that anyway.  Also did not ask about pre-dosing riba a week before peg - I'm kind of kicking myself about that one because I really wanted to know if it had any validity.

[Paris47]

Sorry a little confused,
ha ha , like I really have to even say that.

but I don't have time to elaborate with my 3 days
of test, I was wondering if you could elaborate a little
1, are you saying geno type 2b should be on tx longer than 24 weeks.

that's my question as I take short today and then my last shot next week...
so I am axious to hear your response..!!

[Paris47]

sorry one more question please
I forgot to mention, my last set of riba ****
is now different, I was getting capsules, but the
pharmacy swited 'companyies'??
so now I little pink pills..
any idea if they really are ok, the pharmasicist said
of course
but they wouldn't say anything different , right?
AND THE AMOUNT OF PILLS WILL NOT BE COORIDATED WITH MY LAST SHOT
I will have pills left over, do I keep taking them?
ps...obviusly I don't trust my dr or the pharmacy anymore..
your opinion is greately appreciated

[Mister beagle bailey]

Good morning, Wow next week is your last shot.  I'm a 2B and also treated 24 weeks and now 2 months post tx.  I think other things factor in whether to treat 24 or 48 weeks, like amount of damage, VL, etc.

Beagle

[azgrl]

My doc has been pushing me to tx for 48 weeks since the beginning but I have been fighting her all along.  I now wonder if I should listen to her.  I also wonder if I should have her switch me to weight based from here on out.  I am on standard baby dose of 800mg.  3a cleared at 4 weeks stage 1 grade 1 been infected 4 1/2 years.  diagnosed sept 05. (just for a recap)

My biggest question would be how do they know at this point that 48 weeks will do it?  Since there are no studies out there for 3a's?  Extending tx is the hardest decision I've ever had to make and I haven't made the decision yet.

Thank you for going and letting us know what the doc said.  It is really helpful to me and people in our situation.

Deb in az

[Paris47]

So not to let depression set in.  BUT
do you think my dr would actully say...keep going???

and do I continue to take the riba pills that are still
here, after last shot...
sorry I just don't trust my dr. so whatever your dr
said to you or your research advise is greatly appreciated
thanks for your quick response

[NYgirl]

Some doctors are starting to feel that there is WAY more relapsing going on with geno 2 and 3s treating for only 48 weeks than they 'ever' thought.  In fact the doctor said this idea of yay i'm a geno 2 or 3 is hogwash, especially because right now all of the studies and new medicines are based for geno 1s.

He thinks pretty soon protocol MIGHT change and it might be a more standard 48 weeks treatment for everyone.

All I know is looking around in here = the 80 / 20 odds do NOT line up.  We've had way more relapsers around than those odds it seems to me (but it MIGHT just be that I take them so much harder I notice them more or something.)

Kalio is a 3 and she would have noticed it more factually I am sure.

But for now standard tx is still 24 weeks.

[52TELE]

Paris , I think after your last shot you should have enough ribavirin for another 7 days. I really dont know how important it is that you finish them  , but thats the protocol.

[Kalio1]

am also 3a, did 24 weeks at 800/riba a day and relapsed. I am now doing 48 so in the end I ended up doing 72 all together instead of 48 straight through. In the last year my doc says the thinking on 3a's is pretty much do the 48 now, that thinking has changed since this time last year. He upped it to 1200 a day. This does not mean you won't clear it in 24, of course some do but it does mean your risk of relapse if you do stick with the 24 is higher than previously thought is the way I see it. It is a very tough call, I feel for you, but if you DO stop at 24 and then you do relapse then you will have to do the 48 week course and end up doing 72 weeks altogether.
I had no indicators of liver damage at all but found out recently I DO have liver damage and maybe that is why I relapsed, I am sure it is a contributing factor.
I restarted, did "induction" thereapy (double dosed IFN and riba for 30 days but not doctor ordered that was my idea) and was UND by week 4. Now I am on 1200 riba a day and 180INF a week which is what the doctor ordered. Good uck with your decision. If it hepls any, the seond tx hasnt been quite as hard as the first part.

[azgrl]

Thanks for your input.  Your case is one I have brought up with my doc in the past in regards to getting pcr soon after quitting at 24.

I just may have opened my mind a little more to the 48wks.  I see my doc tomorrow so I will bring it up with her again and see if I continue if I can up my riba.  I have put on weight since tx so I should be able to go higher without a problem.

Trying to figure this out is the pits.

deb in az

[Mister beagle bailey]

I still believe 24 weeks is good for 2B's.  But I would ask for a PCR test to be done before stopping meds.  I had a 22 week PCR done to make sure I was still UND and I was, If I wasn't I would have continued on the meds.

If I remember right, you were UND at week 4, right?  I think the earlier you clear and VL before tx plays a large part of how long treatment is given.

Beagle

[tulsatime]

With me being a relapser and geno 2. I was wondering if anyone knows if there is anything I could print out to show my dr. that I need to treat for longer than 24 weeks again. He still thinks I should try for 24. I am at my wits end. I called to find my old dr but he is not treating for hep c anymore.

FLGuy Thanks for info

[Mister beagle bailey]

In your case, I would treat longer then 24 weeks as you are a relapser.  Maybe it would be good to see another DR if possible.  If I relapse, I'm going to treat again but not with the same DR.

Beagle

[NYgirl]

It's not easy news to hear but it does appear that from all indications - the longer you treat the more it changes your odds so that you will not relapse - no matter WHICH genotype you are.  

I'm geno 1A and 1B - This is the reason that I have decided to go straight through to 72 weeks (I get my TMA results today as long as I am still UND that is...*shaking and biting fingernails*...)

People do NOT want to hear this information and often will say "well my doctor said I am lucky I am a 2 or 3 and only have to do 24" but what you have to remember is...how CURRENT in thinking IS the doctor or do they just prescribe without reading studies etc?

The doctors who are on the cutting edge and really dedicated to healing us have a much more aggressive ideal it seems - and they are starting to really believe the longer you treat the better your chances at SVR.  From all the data they have studied...that is how it looks.

My doctor(s) said the best thing when I started I did was to up my Riba to 1,000 even though I should have been only at 800 and also not allowing any dosage reduction until now (at the end of the original cycle).  

I don't WANT to stay for 72 weeks - but it will change my odds from 48% chance of relapse (geno1 after 48 weeks tx) to 30% (genotype1 72 weeks tx).  That is almost a full 20% extra...and those odds are WAY too big to ignore.

[tulsatime]

Yes I agree. I wish I could see another dr. I have called everyone around none will see me. I was lucky to have found this one, if you could call it luck. He just isn't up to the new info. He has never treated anyone with cirrhosis or even a relapser geno 2. Maybe I can educate him as we go. He did put in my chart that I insited on going 48 weeks. And maybe by the time I get 24 weeks done. He will write another scrip for 24 more. He did say he wanted to help any way he could. I just think he is behind the times.
Bet you feeling good now. How much longer till your 3 mo post test?   Take care, Debi

[roaming]

Curious, Did you hear something about using riba a week before the shot? That was how my hubby was started even though dr. office said it didn't matter if that week of riba was before 1st shot or after last shot. The coordinator just thought it would be nice to take the last riba with the last shot.

[tulsatime]

I bet you can't wait to get your computer up. I know it seems to me that I post most on weekends and you post most on weekdays. I have missed seeing you. You are such a caring person and also made me feel welcome here when I started posting after relapse. Thanks again, hope your feeling Ok, Talk to later, Debi

[Mister beagle bailey]

This is a tough answer to give.  How long to treat???  This forum is the best place for a study to be done because no one is hand picked here.  I look at amommy who treated less then 24 weeks and being a 2B has cleared the virus and is still clear at 3 months post tx and then other 2B's relaped right after completing the tx.  Don't know if anyone, even Drs can really answer this question and be right.  

All we can hope for, is someone out there will find the answers to this and a cure for all that will be guaranty.

beagle

[Mister beagle bailey]

Will do 3 month PCR in about 2 weeks as it will then be 3 months since my last one was done.

You live  Tulsa, OK, right?

Beagle