Phase II R1626 - I'm in

[Trish77]

I got the word at noon today.  I'm accepted into the Phase II R1626 polymerase inhibitor drug trial.  Start date is February 29 in the morning and first dose.  Still letting that all sink in.  Now it's a reality, treatment is a reality and the next 48 weeks is...reality.  Wow.  Nice to get the news on a Friday...I can take the weekend to do my usual thinking process to absorb all that in it's entirety.  

I know there are risks with this and eyes wide open pretty much.  It just happens to be the right timing and it just fell into place.  And there it is.  

Thanks to everyone who tossed in their input on this when I asked for it and those who tossed their support in as well....including that support that was cautionary.  It's all good and it was all considered and in the end, decision and responsibility is mine taking my own variables into the mix.

So..I'll borrow a line from a Tom Cochrane song here ... and kick it up a notch...

"I'm on the highway to hell.....and I'm gonna RIDE it all night long!"  only....I suppose I should exchange "year" for "night" ... lol  :)  

Trish

[Trish77]

I mistakenly mentioned on our site that I had met you and that you were American and I couldn't see from looking that you are Candadian.  I do apologise for this error. Emi
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I'll let it go this time, Emi....but don't let it happen again. ;->

[Emilio44]

I mistakenly mentioned on our site that I had met you and that you were American and I couldn't see from looking that you are Candadian.  I do apologise for this error. Emi

[Emilio44]

Just got the heads up from an American friend in our site.  Considering there's no gag order on this trial - Her friend who started 2/3 weeks ago had a baseline VL of over 4 million and in 1 week that dropped to 350. Yes 350 no typo, that's gotta be the trial drug.  Another friend of mine on my home site said that yes these are the kind of drops they have been expecting with this drug. Bring it on, give me some now.Emi

[Trish77]

Viaduk...sldb...thanks for your thoughts, appreciated. :)

Mike, thanks for your perspective, just makes me feel all the better. Thanks for your thoughts.

Dointime...you have been so supportive and I thank you for that and for your kind words.

Ladywhy....hugs to you .. I hope your own lil monsters are banished soon and permanently.  Rooting for you BIG time!  Thank you for your thoughts, means alot.

StainedGlass, I'll simply look forward to updates as you're able.  So fun to have another "Canuck" in the mix.  Hope you're able to keep up those 12 hour days.  It'll be interesting to see "what's behind door #3" at the end, methinks. :)

Emilio44!!  I did find my way to your site...look for me on the one thread. :)  I hope it's a spin for you to find me there....certainly kicka$$ to have you here.. is that the same thing as a spin? :)  I just find it so cool to know that you and I will be starting the same morning....you Down Under, me Up Over... lol  :)  

So much appreciate everyone's encouragement.  Three more days!!

[Emilio44]

Fantastic, yes I sent a PM to StainedGlass. You should also visit my home site http://hepcaustralasia.org/, it is about 500 strong and well it really is my support on this journey.  Hoping for a higher peg dose group, but hey the trial professor rates this drug and would personally prefer 90mg peg + riba+PI than standard tx.  If you visit the site, discussion is where it all happens, but we have a shout box (instant messeging) thingy.  I have a thread in roll-call called emiliio's place, it would be a spin if you visited.  I am Geno 1, diagnosed October last year,  Take care Emi

[Trish77]

Hi Emi !!  Now that is kicka$$ ! :)  One of my best friends is from Australia, he certainly has some interesting stories to tell.  I'm starting Friday  Feb. 29 at 8am. I'll have to find out the time difference, we're practically starting around the same time!  That's three of us now...you, me and StainedGlass.  Awesome.

I will look forward to swapping notes with you, Emi.  Good luck on Friday, I'll be thinking about you starting also on the same day as me.  

Good luck to you, Emi!

Trish

[Emilio44]

Hi Trish,

I am from Australia and will be starting tx (same trial) in Sydney this Friday 29 Feb at 11am.  I am a member of Hep c Australasia site and a friend discovered this forum and forwarded me the address.  Perhaps we can swap notes. Regards Emi

[ladywhy]

Congratulations! I'm glad for that everything fell into place for you. I hope this study takes good care of you and gets rid of these lil monsters.
Y

[dointime]

I'm glad you got what you wanted and I wish for a successful outcome for you.

I hope you stick around here as I like your posts and also appreciate the info that you are willing to share with us,

dointime

[mikesimon]

Nice! Mike

[Proactive]

Early 70's porsche 911s targa, mid 70's s-type engine..

[mikesimon]

I hate to admit it but I haven't a clue what a German road ripper is. And, I cannot really see the photo well enough to make much out of it other than it's a motor. I can believe you that it would be a job to keep it tuned. What kind of car - if it is a car - is it?
Mike

[Proactive]

Interesting, it seems one gets penalized if they are not logged in, they can't view the link properly, part of it gets cut off....hmmm

[Proactive]

Funny, I posted a link in my previous post, but apparently it didn't take properly here on medhelp (maybe all of willows pics sucked up the server storage! (lol!))...But anyhow, I'll try it again. It is a pretty good repository all in one place of recent abstracts from hepdart.

http://www.informedhorizons.com/hepdart2007/pdf/AbstractBook_HEPDART07_FINAL.pdf

(Mike I noticed you changed your profile pic, so I have followed suit, pic of my german road ripper motor---note those dual triple carbs, one for each cylinder...a pisser to keep tuned (lol)..)
well, here goes, hope the link takes correctly this time.pro

[sldb]

Congratulations!! I will pray for your SVR.

[mikesimon]

I wish you the very best of luck. This drug looks quite promising and I agree with Proactive - this would be the trial that I'd chose too. Mike

[Trish77]

One of the numerous bonuses of the trial for me, Jim, is that I WILL get my baseline and an accurate one.  I'll get tested first day.  (And a pregnancy test, which amuses me greatly. :)  If I didn't get in the trial...yes, I would have pursued that baseline in NY.  Yes, important to get UND asap...but if above that <50 qual at 4 weeks and 8 weeks, I would have wanted to know by how much and by how much I'd dropped.  That's moot now, just saying.  I will still likely make some phone calls to those labs though.  I'd like to know what Canadians need to do to get PCR's in the U.S.  There are still some limitations faced by others here and I'd like that info so I'm grateful to you for posting it.

I'm doing my best to get those ducks in a row.  My daughter came home this weekend and we've been busy getting some of those household things done. She's going to come back next weekend and just stay with me that first weekend.  That's comforting. Beyond that, I want to get through it on my own as much as possible but I know she'll come home if I need her.  I have some contingency plans in place as you suggest, not having to pay for my drugs is a godsend, takes alot of pressure off in various ways.

And yes, my protocol will be dictated by the trial.  So only thing that remains is to deal with any sides that come along and watch out for the known risks with this one...and hope for the best.  

Thanks for your thoughts, Jim.  

Trish

[viaduk]

Congratulations and good luck

[StainedGlass]

" I will be very interested to know your experiences as you go along if you won't mind sharing....I am just really glad to know that there is someone else here in the same trial starting about the same time."
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Like wise.
So far so good - very slight sx.  Actually almost nothing.  I feel like I am waiting for the axe to fall. Could I be in one of the arms with lower IF dosage??  I know there are too many variables to even speculate and as my sweet keeps reminding me, I typically have very little reaction to medications.
I'll try to check in here as much as possible.  My work is quite demanding - 12hr days 5 days a week - So I'll have to see how my time / energy ratio plays out as I get farther into this.
Again hope all goes well.
cheers
B

[jmjm530]

Just caught that you got in the trial, so congratulations, as I know how much you wanted this.

No advice really in terms of treatment, because your protocol will be pretty much dictated by the trial. As to your baseline test in NY, not sure if you're still persuing that, but in thinking it over, not sure it's 100% necessary. More important is that you get UND ASAP and that has nothing to do with whether the baseline is six days or six months old.

Other than that, just get your ducks in order as best you can. Some of us fly through treatment pretty easy -- and some have a rough time. Contingency planning in terms of both work and taking care of yoursel is always a good idea if you fall into the latter group.

All the best,

-- Jim

[Lady Lauri]

  Here it is! Hadn't seen this! Really happy for you, know you were so ready to start!

  I got into this Albumin trial just in the last few days! Was such a blessing, no hassle's, great care, never wait app.'s, NP get's back to me immediately and the best part..all free!! I drew the SOC tho, (as 2b, that was fine, really what I wanted!) but it has really all fallen into place in this, AND got the fibroscan 'trial' also (get a couple more). ONLY downside was no rescue drugs, tho I didn't really want MORE drugs, but do you get rescue drugs if needed?

Hope you get the best arm, the best results and a very doable tx!

LL

[Trish77]

Andiamo....thank you :)

Pro....I will look that up....I'll add it to the list.  I appreciate the extra reference.

StainedGlass...wow...another person in the same trial as me and a fellow Canadian at that!!  Very cool.  :)   That Tom Cochrane song is a bit of a theme song for me...lol  :)  I will be very interested to know your experiences as you go along if you won't mind sharing....I am just really glad to know that there is someone else here in the same trial starting about the same time.  Best of luck to you also on this highway.  

HR...thank you.  No, no talk of that trial.  I looked it up to see where it's recruiting and not in Canada and limited places in the U.S. but it IS actively recruiting for treatment naive Geno 1, which is why you're asking most likely.  It sounds even more promising than R1626, less side effects.  This is a VERY interesting time for new developments in HCV meds.  I couldn't have waited a moment longer mentally to get started on tx so this is very providential for me to get into this drug trial at this time.  

Harry....thank you!!  And yes, I can share info.  I asked expressly about that and there is no requirement to keep info under wraps.  However, I'm not sure I'll have much to share other than my test results as I go along.  It's double blind, so I won't know until I get to the end which arm I've been in.  I will post sx as I go and how my WBC and HGB is doing.  And we shall see, eh?  Hope all is well with you, Harry....waiting to hear more about your own situation as you're able and as you're inclined.  

Very excited about getting started on tx and to have my quant PCR's so often...lol!  :)

[HARRYBEADS]

Thats great news can you keep us inon the scoop or is this not allowed.

Harry

[Hepatitis Researcher]

Was there any talk off any possibility to get you into one of the R7128 pol inhibitor trials?

Best of luck to you.