Albumin Interferon Phase 3

[Lady Lauri]

Hi all. Just figured out how to read/do profiles. ( I AM educated, I swear!) New here. A wonderful site and so happy to meet all of you, bad terms or not!
I've read HOURS and didn't find anything on this subject, so forgive if I missed it.
Diagnosed May 29th. I am 49, type 2b, stage2-3 fibrosis, otherwise he said my 'body is handling very well'. All other bloodwork 'good', VL 812,000. I am going to Shands. I qualify for the Phase 3 study of Albumin Interferon w/ 800mgs. ribavirin ( I am 127 lbs.?) versus Peginterferon w/ ribavirin. I don't get to choose tho, will be the luck of the draw on Aug. 23rd. Knowing the latter works and researching hours on the other, I'll do either, especially with type 2b.
Has anyone done this, know much, any extra info. anyone has? Shands said several have done there and I've seen that several of you are at Shands. (we'll all have to start wearing a red shirt or something to meet when we go :). May have sat next to each other!
Albumin is showing, thus far, to be better QoL, sides and better SVR (for type 1 also.) I am still a bit worried on the 'new, unknown' drug, long term, etc. I need to note here...I have ONE total phobia for years now, all drugs! Pill, shot, capsule...whatever. I have a hard time taking what I need to whenever they give me something now. Even antibiotics! Time to conquer that!
Thanks for any input and wishing you all 'good days'.               Lauri

[Lady Lauri]

Okay, so I am to worry that the one's who did the Albuferon trial anr either.....
Better and off the site now or ?? Worse, gone, uh oh ???
Anyone know anyone who did this trial? Or is on it (? now going for Type 2b)
Also, on the posting, it say's try to post 2 per 6 mths., I have more questions  :) ??

[susan400]

Here's the info about the Orlando place I mentioned:

http://www.ocrc.net/

Anyhow, I'd have to be in a trial for non-responders as I've never cleared the virus on 8 other times of trying.  Also, I have to wait through the 'clear-out period', until I can participate in another trial.  My clear out of 3 mon. will be up in the first week of Oct., if they require a 6 mon. clear-out period, I'll have to wait until Jan.   I really don't want to do another trial w/Pegasys as I already know that it doesn't work as well for me as Peg-Intron or Infergen.  And I'd rather do one that includes the Riba because I think it would increase my chances.  I really don't know that much about which trials this place in Orlando are even offering, or if I'll qualify.  And there's always the possibility that my Dr. in Lakeland will have some ideas, or the Mayo Clinic.  I did call Dr. Nelson's office, but I haven't decided to schedule anything yet.  I'll probably wait until after Nov. time frame and see what happens.  Thanks for you your 'place to stay' offer.  If I see Dr. Nelson, it will be in Gainesville and I'll stay at my parents' house in Lake City.

Susan

[Lady Lauri]

God, I talk a lot!
Skip all that on Dr.Nelson.( do check out the info.tho)
    It is my Dr. I just had to read till I found out.
  2:20 AM.....GOTTA go to sleep!                     Lauri

[Lady Lauri]

Hi Susan,
I have not heard of the Orlando Center and will check it out and which research they are doing. I am at Shands and the trial tx I am starting, thus far, has good reports for type 1 non-responders. 2 websites to see below. Before I go into more on this tho, the 2nd website, mediwiss, go to it, scroll down to the 10th article (than also 14th for 'non-responders) BUT, on the 10th one....It say's 'Dr. David Nelson OF Human genome Sciences" (the company doing the trial and it say's 'of Human G. S. not 'with' ?), is this MY-some of our's- Dr. Nelson at Shands ??? He was all happy for me, type 2 and I qualify for this trial, ( now doing on Type 2) and never mentioned he was a part of the company ? I see him Wed. Gotta find out. (I am too tired to read anymore tonight and sorry if this is confusing, due to am very tired!) Sites are :

http://www.hgsi.com/events/EASL%202006%20Zeuzem.pdf
http://www.mediwiss.de/Albuferon.htm

Anyway, read up on this for all 'non-responders'. It's phase 3 so won't be too long to be 'out there' I think. I am not too slick on the medical mumbo jumbo but looks good. (anyone translating more in laymans terms would be nice:) And yes, they are paying for all but extra prescription meds, as in for sides. Even gas, expense's, etc.Which is a God send with crummy insurance. Also lucky it's only a 30-40 minute drive for me. I don't get to pick tho, on the day of screening, they call and it's the luck of the draw wether I do pegasy's/riba. or Albumin Interferon (Albuferon)w/riba. After much researching, anticipation, concerns of 'new drug', I have put it in God's hands. What I get handed  I'll do! The 1st website (hgsi) is quite confusing to me, but I get the summation of it, which appears good, maybe for all of us. (Better QoL, better RVR) If you ever decide to , or get to, go there, I would be happy to put you up for the night (we are nice, sort of normal :), but fun people.) Providing you are not an axe murdering internet troll. (kidding. but your not , right? :) It's late, I am getting dingy and barely making sense!
Going to check out that Orlando center tomorrow, curious which trial they are doing and gotta find out about this Dr.Nelson, Human Genome thing. Do check out this Albuferon.
Hoping it's hopeful for all.                 Night, Lauri

[Lady Lauri]

Okay, did figure you weren't 107 and being a bit adolescent at any age is a good thing :)
My kids are grown so never heard of the Mike & Ikes. Gotta try them now!
Before I answer Susan in next post. Anyone remember who it was that said 'Dr.Nelson at Shands one of the best in Fl." ? I think it was JmJm, but he is my Doc and check out the website below about my trial tx and is it the same Dr. Nelson in article??? (follow me below, THAN it will make sense! (??)                                Lauri

[susan400]

Hey, have you ever heard of the Orlando Clincial Research Center?   There's a new place in Orlando that's doing various trials there.  The site informatioin is posted on the Centerwatch clinical trial site.  I contacted the facility to inquire as to if they had any trials that would be coming up in the not too distant future.  The doctor listed on the site, emailed me back on the same day.  Supposedly, pending the fall conference, they may have a trial w/a 'type of interferon' in Nov., for non-responders.  I'm thinking it's probably for the Albuferon, what do you think??   I have no idea whether I'll qualify, or even if I'm really that interested at this point, but I sent in some history in any case.  It looks like this trial site actually pays people for travel expenses and extra $$$.   I've never had that before, where I'd actually get my gas reimbursed.  When I was driving for 3 hrs each way (6 hr. total) to Jacksonville those 5-6 weeks, the costs were unbelievable.  That would have come in handy.   Also, driving to Orlando, I'd have tolls, if I end up doing this.  

Susan

[FlGuy]

Mike and Ikes are candies (my kids favorites).  The idea is to imagine that ribavirin is not ribavirin and instead is somerting more pleasant.

This is the right place for the triall discussion.  Again, only a  few people here participate so not sure how much input you'll get.

I'm not 107, just look and feel like it.  Wife and kids think I'm an adolescent.

[Lady Lauri]

Thanks for the input. Did see the Fla. Heppers post.
  Should I post this on the other Hep forum also to try and find those that have done this? I have searched, re-searched as Albuferon also, just posted as drug named on the trial. Would still like some discussion with anyone whose actually done it.And yes, very grateful to be type 2b, was on cloud 9 (in the fog:) when told. Especially with this drug phobia!
Okay, I've thought and thought on it........what the heck is 'Mike&Ikes' ??? As your 107 years old :), is it before my time ? (49)
              Hope your having a GOOD day, Lauri

[FlGuy]

There are a few people who post here who are in the Albuferon trial.  You might find more if you search Albuferon, rather than Albunim.  As a 2b you certainly have some good opportunity ahead of you.  Another Florida hepper, huh.  If you go thru posts of the last week (not sure if it in the Forum or Community Forum) you'll see that there are many of us. I guess you've seen that one.  Phobia about taking pills?  Imagine them as Mike&Ikes, just don't chew them.  Good luck.