fishdics consults-interesting

[fishdoc]

OK, everyone in the area of Albuquerque, Dr. Arora is the real mccoy.  I put 11 years of labwork into a spreadsheet, my list of questions, and this is the skinny.  Just to update those that don't remember, baseline 2,890,000 12 week was 38,700. His resident said "thats close enough", and I was thinking HUH UH< I have read the literature...  Dr. came in with two students, and said. You failed to achieve a 2 log drop.  If you continue the current course, you have a 5% or less chance of SVR.  However, it may be that you are not a true nonresponder, because your hemoglobin has remained virtually unchanged, which tells me you are one of less than 5% of patients that hypermetabolize ribavarin. ( he has conducted 17 clinical trials with ribavarin)  Essentially, you are on monotherapy.  Options: increase ribavarin, 6 weeks at 1400, then up to 1600 for another 6 weeks, redo the PCR.  If you are undetectible at the 12 week, you have a 65% chance of SVR.  If you fail to hit undetectible, then stop the treatment.  If I am undetecitible, my 48 weeks starts today.  If I stop, and  start again in 6 months, you start out with the same odds as this time (I wondered about that).  He also said that he has a VX-950 trial coming up for....... nonresponders.  You have to have failed to achieve a 2 log drop, and failed to hit undetectible at 24 weeks.  Starts in 6 months or a year.  So trip was well worth it.  Cops came and hauled the crazy uncle off while I was gone, man, I'm a making progress.  Thanks for all your well wishes, I could feel the vibes...

[Paris47]

Yep, good job at clarification...all the confusing things in life, I got this one. thanks

[jmjm530]

Paris says: I am concerned about your comment...How do you 'flag someone?"
I believe I understand you connection to get his attention, but is there a place you go to ..to alert someone of a thread that might be of interest?
S
---------------------------------------------------------

The software here is pretty, ah, errr...basic :) Other discussion groups have ways to notify people but not here.

So unless you happen to have someone's email address, the only way to get their attentiont that I know of is to put their name in the "comment" line. That's what I meant by "flagging" someone. Hope this clarifies.

-- Jim

[friole]

Hooray - came on looking for this post.  So he did think it was a riba saturation problem.  Well, howdy doody! I am excited about your new beginning.  Now, unfortunately (probably) you will get to experience the wonderful world of anemia along with the rest of us.  I am so glad you have a plan.  Is your local doc on track with this (I know you like him) so you can get your labs locally or do you goto Albuquerque for everything.  I am especially excited about you being on track for a trial as a fail safe.    My doc is letting me extend for 8 weeks.  My new end date is Aug 4th.

Later, kath

[jmjm530]

Anyone remembers one of the presentations at the FCO AASLD conference that dealt with using Procrit at the onset of tx, which yielded higher SVR rates? How would anyone in a study like the one mentioned, know of hypermetabolization of Riba if Procrit is used from the begining?
------------------------------------
I remember the study and a number of docs have been using that strategy for some time.  You make a good point but Fishdoc's doc suggested that hypermetabolism of riba only affects 5% of people who take riba. Therefore, the advantages of pre-dosing may statiscally outweigh the disadvantages of missing the 5% who hypermetabolise. Also, maybe using current (or future) data they can come up with a predictable hgb curve with different levels of Procrit that can differentiate betwen normal riba absorption and hypermetabolized absorption.

Speaking of studies, remember the one that pre-doses riba before the first shot of Peg -- I believe they start pre-dosing a couple of weeks early to get riba levels up. If I ever had to treat again with current drugs -- hopefully NOT -- I'd consider discussing with my doc pre-dosing riba while using Procrit prior to treatment. Kind of a double whammy approach. My more likely scenario should I relapse will be to stay glued to the Vertex trials and jump in when appropriate.

-- Jim

[Paris47]

I am concerned about your comment...How do you 'flag someone?"
I believe I understand you connection to get his attention, but is there a place you go to ..to alert someone of a thread that might be of interest?
Still trying to figure out the forum
I wish there was a way to get to the forum and hit a button...and see "newest posts since last visit'

[jmjm530]

Fish says: I specifically asked if I should take it more often, and he said no
------------------------
At 1400 mg/day or even 1600, I'm guessing that more frequent dosing wouldn't matter until you get over the 2000mg/day mark which I don't think your doctor will take you. Plus other studies show that riba is absorbed better with meals with fat so taking it with your biggest meals of the day may have some advantages as well.

Another subject, and please don't take this the wrong way, but you did infer in a recent post that you were overweight although you didn't specify how much and I'm not really asking.  But in case,  being very overweight has been associated with a lower chance of SVR. In fact, some doctors have their patients lose weight prior to treatment to give them a better chance. Bronx, for example, I believe was told to lose close to 30-40 lbs. For now, this is probably academic since you decided not to take a break before upping the riba, but should things not work out -- you might consider getting down to your ideal weight before re-treating.

-- Jim