Put a stamp on that Dragon and send it on it's way!
Great news!
JimmyK
Pablito said
Jun 9, 2016
Those are some mighty fine figures Skimily. A competition it is not, but just to put your week 2 results in context mine was 1000.
Skimily said
Jun 9, 2016
Thanks for the support y'all!
Waiting another two weeks for more blood results is gonna drive me insane!
Tig said
Jun 9, 2016
Emily,
That's excellent! <25, means it's too low to quantify. The last few stragglers were enough to be seen going down the drain. Next test, you'll be undetected. Just wait and see!
robertsamx said
Jun 9, 2016
Hi Emily, That report of <25 at your two week check up is VERY VERY good! Your V/L came down quick. I'm a betting man and I'm putting all my chips on you! You got this ome in the bag! Your a dragon slayer. Keep up the good work. RC
Skimily said
Jun 9, 2016
Update --
I'm currently at my week 4 visit. Blood will be drawn 3 times, in two hour intervals.
past blood draw results are in , and as of Week 2, my viral load was "less than 25."
so what is left is Week 6 visit, Week 8 visit, and follow ups.
wendyo said
Jun 9, 2016
Way to go Howard. Terrific news
Sydhanrahan said
Jun 9, 2016
That's great Howard.
Syd
Loopy Lisa said
Jun 9, 2016
Wooohoooooo great news, you are in slaying mode! :D
Tig said
Jun 9, 2016
Congratulations Howard! That's fabulous. If your viral load has dropped significantly, the chance of it being undetected in another 4 weeks is very high. Keep it up!
NRA4ever said
Jun 8, 2016
I went in today for my 5 week appointment. I'm Type 1 A. My levels are about half of what I started with. The nurse said I might be clear by the time I come back in 4 Weeks
Pablito said
Jun 6, 2016
3 trials, wow! You must have kissed the Blarney stone and have the gift of the gab!
NRA4ever said
Jun 4, 2016
I was offered 3 different trials. One was 8 weeks & had you staying for 6 hours after your dose with EKG & other test every 2 hours. The other option was even more invasive with a liver biopsy & staying after your dosing for 6 hours also. I don't remember the number of weeks. I took this one on my Doctors recommendation. I'm in & out in less than a hour. They take 7 to 9 vials of blood every visit.
Tig said
May 30, 2016
The duplicate threads on ABT-530 and ABT-493 have been merged with the Abbvie ABT 493/530 thread recently but something went wrong and it has reverted to seperate threads. I'm going to attempt it again and then close the copies so we don't have identical topics that are duplicating comments . Thanks.
NRA4ever said
May 30, 2016
I am in a trial with this drug. I am 4 weeks in. I will post my results as i go
NRA4ever said
May 30, 2016
I am in a 12 week trial. I know so much more now that i can ask questions st my next treatment. I will post what i lesrn sfter Jume 8. Thanks for thhe knowledge
Canuck said
May 30, 2016
Hey nra,
Nice about no noticeable sides for you.
Did you, like skimily, get an ABBY trial handout, outlining all the planned dates and events for your trial.
As you and Tig mentioned, your "Expedition 1" trial is 12 weeks, and skimily's trial is 8 weeks. Skimily said she is a GT2b, and I think you mentioned you are waiting for confirmation but thought you might also be a GT 2. Same drugs, similar trials, and (possibly) both of you GT2's. Chinacat I recall is a GT1A.
I am wondering if your trial (and blood draws) is similar to skimily's, in that you too get the same kind of blood draws (with this specific 2 hours thing on day one and at week 4)??
Pablo,
Skimily might have had her cake and ate it too, and, I admit Gilead feeds me well for some reason (I don't know what happened to you!!), but just remember .... some wise person once told me - "there's no such thing as a free lunch"!
Wish we knew how our other lovely ABT493/530 lady "chinacat" is making out! I highly suspect - she is making out VERY well!
C.
-- Edited by Canuck on Monday 30th of May 2016 01:48:46 AM
NRA4ever said
May 29, 2016
I get blood draws every visit. I'm glad they do it. They will be able to monitor my progress well.
NRA4ever said
May 29, 2016
Im in my 4th week of this trial. I get to start coming in every 2 weeks now. I feel lucky to get in. This med has great promise. I hope to be HVC free in 12 weeks. I have not had a single bad effect from these meds. i try to eat before I take them but some days I just wake up take my meds & go back to sleep. Unless something changes i'm vert happy with this study. I read only 5% have side effects.
-- Edited by NRA4ever on Sunday 29th of May 2016 01:20:57 AM
Pablito said
May 28, 2016
Lunch, snacks, coffee...what? Why is service in north America always better than Europe? I was on the same trial as Canuck (actually I'm still on it, she's finished) and there were no refreshments provided. Bah humbug!!!
I suppose I'm getting a x3 pill that costs a thousand dollars a tablet so I can't really complain.
Pablo
wendyo said
May 28, 2016
I too am glad to read about the blood draws and thanks Canuck for going there and Emily for sharing this with us! It is fascinating that ABBVIE does this, says lots for them. I for one am glad I did not have to do that as no veins left in my arms due to my charming past. I look at the phlebotimist and say butterfly to the hand.
Canuck said
May 28, 2016
Hi skimily,
F 0-1 fibroscan, a falling ALT, and a nice early crashing VL!- really, really good!
Thanks for letting me grill you about the blood draws - and the time and effort it takes on your part to explain it all - but I find it very interesting how much work ABBY does to watch how their drugs perform. Reassuring due diligence in data gathering.
Unfortunately Tig is right with his depiction of the pin cushion - you get to contribute to the data by doing the hard part! Steel yourself for the draws by thinking nice thoughts, every drop (and every bit of data they gather) is helping you, it helps them, and thus in turn may help others in future. You say they gave you a wee snack and coffee while being their human pin cushion?? - hmph, I got you beat, Gilead kindly gives me a whole big lunch every draw!!! hee hee
If I have this right, you have had Week 1 and Week 2 draws done, and are now waiting for your Week 4 draws - perhaps they will tell you what your VL's and ALT's were (at Week One and Two) while you are waiting for Week 4? That would be nice if they would let you know the results, as you may very well have some positive feedback there to be gloating over!
Yer doing good. C.
Tig said
May 28, 2016
Emily,
Seeing a reduction of your liver enzymes is a very positive sign that improvements are already beginning. A lower ALT tells me there is a reduction in the inflammation. Good for you!
Now as far as all those blood draws, I'll let this picture tell you what I'm thinking! If they keep taking it, they may have to give some back, lol!
Canuck - It is to my understanding that my blood is drawn in intervals to see how the medicine is metabolizing in my blood. Is metabolizing the right word..? I guess they want to see how long it takes my body to do something with it. They also want to see if my body is building a resistance to the medication.
To be very specific, the run down so far has been -
Day 1 - fasted. blood drawn. medication given with a snack. coffee time!! :) 2 hours later, blood drawn. 2 hours later, blood drawn. 2 hours later, blood drawn.
Day 3 - did not fast. took medication at home. blood drawn.
Week 1 - did not fast. took medication at home. blood drawn.
Week 2 - did not fast. took medication at home. blood drawn.
Week 4 - asked to not take medication until I get there, after 1st blood draw. She said I don't have to fast, but if I can, I should. So I probably will. 2 hours later, blood draw. And then I will receive my next month's worth of medication.
Also, my Day 3 results showed that my ALT level has lowered to a more normal range. But I thought that didn't really matter much?
wmlj1960 - I'm not sure about my score on the "A" thing. What I do know, is that my liver seems to be in great shape currently. I had blood work done at GI office, that was supposed to tell me if I have liver scarring. Didn't hear anything negative there. I had a fibroscan; my score was very low - F0-F1 range. The results of my liver biopsy showed F1. There has been no mention of significant scarring of my liver.
Canuck said
May 28, 2016
Hi skimily,
Thanks so much for sharing about you (and your trial). I too felt much gratitude in getting into a trial, getting the opportunity to get trial drugs, and for the kind people who helped me along the way (mine - sof/vel/vox 8 weeks).
I too, like you, was motivated.
The trail handout information (you refer to) IS handy, helpful, isn't it - I assume your trial handout was much like mine in that it helps to spell out every event/test/date planned for the duration of treatment/follow-ups, and lists some possible sides.
I was particularly (VERY) interested in your description of the blood draws, the 4 draws on Day One (spaced out 2 hours apart), and then all blood draws after that also being done in 2 draws (split 2 hours apart). I am real curious and intrigued about that!
IF i may ask ... on Day One - did they ask you to arrive fasting, then did one or two blood draws while you were fasting, and then asked you to take your first pill (and perhaps have something to eat) somewhere in the middle of the 4 blood draws??
Also, for all your subsequent blood draws (Day Three for example), did you arrive fasting and have blood drawn while fasting, then, after you had a eaten and after you had consume your Day 3 pill, they drew blood again 2 hours later?? Maybe I am misunderstanding you, and it was ONLY to be the Day One and Week 4 bloods that are drawn in this 2 hours split fashion. Either way it is still different and they must have a reason
They must be looking for some very specific measurement in your trial. QUITE interesting (to me)!! I am really wondering what specific parameter they wish to see by separating your blood draws 2 hours apart.
In my trial, I must arrive fasting for a blood draw. But blood is collected all at once while fasting, then it's lunch and pilltime, and I do not have to have any second blood draw 2 hours later like you.
Did they ever explain to you why your blood is drawn in this 2 hour split fashion?? Did they tell you what your prior ALT was and what your ALT is now??
I am so glad you have had such a wonderful crash of your VL - no doubt this pleased your doc!
You are doing SO well (in every way)! C.
NRA4ever said
May 28, 2016
I'm taking ABT 493-ABT530 100mg/40mg tablets. I take 3 per day. I had to get my pill bottle to get the info. I have blood draws every visit plus a drug scan. I quit drinking & drugs in 87 so the drug test are not a problem. I have fatigue quite often & I itch a lot. I started 2 week visits now. I will get more info on my condition & what type Hep C I have. I know i have cirrhosis but not how much yet. I am getting a MRI soon to find out how bad it is. I had to have 6 months of HVC treatment to get in my study. I have osteoarthritis in most of my joints. This appeared after I had Lyme & Rocky Mountain Spotted fever in 02. It has gotten so bad I had to quit working & get in disability last year. I'm glad I found this site. I didn't know I had HVC till Feb of this year. I hope to learn from this site & hope to use it to help others. Lets get HVC free!
Skimily wrote:they say when you get sober, your past might catch up to you and run you over like a train (or something lol).
Being in recovery from a long history of drug abuse and alcoholism I have found this to be far from what I am experiencing. Today my #1 priority is staying sober and helping others to recover. My negative past has turned out to be a very valuable asset in doing both. I never got ran over by a train but I got ran over by a truck and as it turned out, living through that has given me a new appreciation for life and I enjoy every day of it now more than ever. You can deal with this and will come out of it cured of Hep C and with a new appreciation for living a healthy life and being able to raise your boy. 8 weeks is going to be done before you know it and you're going to be an example in the future for someone else fearful or doubtful facing treatment.
I can, and will, deal with this with strength. I won't let this bring me down. It's just an added reason as to why maintaining sobriety is important.
With an attitude like that you cannot fail!
"we got your results back, and your liver does show chronic hepatitis C."
The liver biopsy provides information on both the grade (degree of inflammation that reflects ongoing liver disease injury) and the stage (amount of currently established fibrosis).
The main determinants of inflammatory activity are lymphocytic piecemeal necrosis, lobular necroinflammation, and portal inflammation, which are graded 0 to 4. These grades will be reported as A0, A1, A2, A3, A4 on your biopsy results.
The main determinants of fibrosis are the length in expansion of fibrotic areas between portal tracts and these changes are staged 0 to 4 in the classification systems. These stages will be reported as F0, F1, F2, F3, F4
Do you have the biopsy results termed in this way?
Welcome to the forum Emily!
-- Edited by wmlj1960 on Saturday 28th of May 2016 04:27:41 PM
NRA4ever said
May 28, 2016
I will get more information about the trial and post it here. I got HVC in 67 from a blood transfusion.
Tig said
May 28, 2016
Your trial is named "Expedition 1" and is a 12 week open trial of ABT 493/530. The protocol is pan genotypic and has proven very effective thus far. I'll dig up some specifics when I can, but the high SVR rates for this drug combo are listed in several articles online and here. Use our search function above and you'll find our discussions.
I'll have to research that descriptor and get back on that. These trials have several reference names. Do you have any paperwork listing the trial by name? Like Surveyor 1 or 2 or a Clinicaltrials.gov number? Your genotype, fibrosis level and anything else you feel like adding to your bio and signature are helpful when replying.
Canuck said
May 28, 2016
Hi nra,
So, you are 3 weeks into a trial? of abt493/530 . Would love to hear more! Like - what is the length of your treatment, your GT, your VL, your history. If i have read your entries correctly thus far, and you are 3 weeks into these drugs, that is very nice, that we now know 3 of you here, who are now on this regime. Hope to hear more from you. Thanks for posting. C.
NRA4ever said
May 27, 2016
I'm lookin for info on M14-172 study's. I'm 3 weeks into it. I want to know more about it
Tig said
May 27, 2016
Hey NRA,
What are you looking for? This trial or trying to share a link? Welcome to the forum!
NRA4ever said
May 27, 2016
AbbVie M14-172 study
Pablito said
May 27, 2016
Hi Skimily
By compounds I meant medications in the trial so thanks for the info. So many new DAAs on the market/coming to market soon; it's exciting. Now all we need is for a CEO/board of directors of one of the big pharma making these DAAs to make a moral decision to price them so they are affordable.
Pablo
Sydhanrahan said
May 27, 2016
Hi Skimily,
im not well versed in all the different DAA's on trial now but I do know that for your viral load to drop that much in 3 days what you're on must be pretty effective. I too am a Genome 2 and it makes me happy to see that this type is being included in some trials. It's supposed to be the easiest to treat, but without treatment it gets the liver as surEly as all any other genome type.
I really admire your dedication and strength as you go about fighting this. You're doing this for your partner and your seven year old too so that must make it easier to cope with the symptoms and the roller coaster ride.
next time you see your health care people, ask for the results of the biopsy and what exactly it means. Since you have "only" had the virus for a relatively short time, you might come out of this with a very healthy, or only mildly damaged liver, which will return to normal given time.
Good luck with it all,
Syd
RAGDOLL said
May 27, 2016
Hi Emily and welcome to this family. These new generation DAA's are the ticket. You will do fine. Best wishes and thanks for sharing your story. Chris
wendyo said
May 27, 2016
Really glad to hear you are doing well on this protocol and I know having little one(s) and being on treatment is not the easiest thing but remember God doesn't give you more than you can handle and the program gives you the tools to handle it
When I was on interferon my twins were babies and thank God my mom was still around as I needed the help! Fortunately for me and you, these newer treatments are more tolerable.
It's ok to look at the past, just don't stare too long. One day your past will help someone else in the rooms. Of this I am sure.
wendy
Skimily said
May 27, 2016
Good morning! Thank you so much for the positivity and support :) I am trying my best to keep a positive mindset about all this. Perhaps I am in some kind of disbelief that I could get so lucky, so fast after dx, to have been referred to participate in this study. I feel incredibly grateful for the chance to eventually put all this behind me, and to be in connection with some really amazing healthcare professionals. In the beginning, I wasn't expecting for them to care as much as they do. The doctor at the hospital research center said to me - "You will be cured. That is my dedication to you." I was like wow. But at the same time, there is a lot of fear. For years, possibly having hepc was in the back of my mind. I want to have more children and eventually get married to the man I am dating - so I up and decided one day that I wanted to know for sure. As sad as the news made me, I don't regret the choice to take control of my health. In the rooms, they say when you get sober, your past might catch up to you and run you over like a train (or something lol). I can, and will, deal with this with strength. I won't let this bring me down. It's just an added reason as to why maintaining sobriety is important.
In regards to Pablito's request on info about the compounds and trial - I have no idea what you mean by compound lol. I pulled out my super thick trial paperwork, though, so I could look up what you would like to know. You are all very much more versed than me on all this! I have only been reading about it all since December. What I can tell you, though, is that it is Surveyor II. Every morning, I take three 100mg/40mg ABT493/ABT530 pills. My phase receives no RBV. It will last 8 weeks, unless the participants in general seem to need to be extended to 12. In earlier phases (?) participants have reported fatigue, dizziness, nausea, headaches. I have not experienced any of those, besides what is normal for me. I'm a mother of a 7 yr old boy, and also a waitress - so I'm used to fatigue and headaches lol. And i believe I am Arm S, but don't hold me to that. My blood was drawn on Day 1, 4 times, in 2 hour intervals. Again on Day 3, Week 1, Week 2, and in two weeks I go back for Week 4's 2 blood draws spaced out between 2 hours.
To get into the study, I needed to either have had been diagnosed with chronic hepc for at least 6 months, or a liver biopsy showing so. Since I was officially diagnosed in December, I needed to have the biopsy to participate. That part was a little terrifying, but I figured hey, I'm in pretty deep already, might as well just go for it. It's pretty weird to be excited to hear "we got your results back, and your liver does show chronic hepatitis C."
The research they did with animals + pregnancy showed no adverse effects. But I am asked to used two forms of birth control up until 6 months after EOT. They're not sure of adverse effects of the meds + pregnancy in humans, so better safe than sorry, for sure.
And I will try to drink more water! I run entirely too much on just coffee. But I recently read coffee is good for the liver, so thats my new excuse for drinking it so much ;)
-- Edited by Skimily on Friday 27th of May 2016 08:09:39 AM
-- Edited by Skimily on Friday 27th of May 2016 08:11:22 AM
Cinnamon Girl said
May 27, 2016
Skimily wrote:
So, 2 weeks ago I started a trial for 8 weeks of ABT 493 ABT 530. Today was my fourth visit/blood draw - the doctor got my lab results back for Day 1 and Day 3. Results showed that on day 1 my viral load was over a million, and on day 3 of medication, it had dropped to 700ish. She said this is good news and exactly the response we want. I don't go back for another 2 weeks. I'm hoping she has the blood draw results for week 2 and week 3. I am so nervous over all this. Trying to not get my hopes too high, but this seems really good, right?
Edit: I have genotype 2B. Diagnosed December 2015 - But assuming I have had it for up to 8 years because that's when my drug use started. I have been clean for 2 1/2 years & sober for 2! :)
-- Edited by Skimily on Thursday 26th of May 2016 02:50:31 PM
Hi Emily and welcome!!
I`m very pleased to see you`re 2 weeks into this Abbvie trial and responding so well! I can understand you feeling that you need to buffer yourself against potential disappointment, but seriously, you have every reason to be very optimistic about the liklihood of achieving SVR with this excellent and very effective drug combo.
Congratulations on staying clean and sober for over 2 years, I know it takes a lot of will power and determination, which you obviously have, so try not to feel nervous about this trial, you have a wonderful opportunity here to free yourself from Hep C so relax and take it in your stride!
Please do keep us updated on your progress... and good luck!
robertsamx said
May 26, 2016
This 493-530 combo added to Viekira PAK Would just about get all hcv types. It will be effective . I was offered this trial, turned it down for the Polaris trial, and that didn't go so well. Both of you made it onto a good trial, and I think your both doing well. RC
Canuck said
May 26, 2016
Hi skimily (and chinacat),
Great!!! results from these ABT drugs 493/530. Good for you two!! You are lucky to get this regime!
Looking at the prior study data, about this relatively new drug regime (493 being the NS3/4A, and 530 being the NS5A), it sounded VERY good, but NOW, with you two posting your (actual) trial stories, we can ALL see for ourselves just how wonderfully well these drugs are working, (for you as a 2b and chinacat as a 1a).
Good job! Keep posting. C.
Loopy Lisa said
May 26, 2016
This is exiting stuff really. Congrats all you people, it is making a much brighter future for a lot of people. I used to dread reading some of the threads a few years back , people really had a rough ride. Now new people will read these threads and think, yes please, me next!
Yay for trials and you brave people on them. :D
JimmyK said
May 26, 2016
Thanks.
I never could figure the reason for washing a Hog unless it had two wheels.
Tig said
May 26, 2016
This thread has been merged together with the Abbvie 493/530 thread. Better to keep one thread going instead of starting multiples of the same thing. Thank you!
Linuxter said
May 26, 2016
Jimmy,
hogwash
[hawg-wosh, -wawsh, hog-]
noun
1.
refuse given to hogs; swill.
2.
any worthless stuff.
3.
meaningless or insincere talk, writing, etc.; nonsense; bunk.
... but you knew that already ... LOL
In other words, confidence is key ... having faith in a higher power, doing everything in our power to help in our treatment and trusting in these cutting edge, wonderful new drugs will help ensure our success.
Dave
-- Edited by Linuxter on Thursday 26th of May 2016 04:28:34 PM
Linuxter said
May 26, 2016
I think we have dueling threads going on here ... much easier to follow if one or the other is used to discuss this if possible.
Dave
Linuxter said
May 26, 2016
Hi Emily,
Welcome to the forum, we're glad you're here!
First off, Congrats on being Drug-Free!
Also, Congrats for getting on the trial ... that's wonderful news.
You should be aware that GenoType 2b is the easiest of all genotypes to cure, there is a VERY high success rate even with drugs that are not the latest, cutting edge drugs. I don't know much about the trial that you are on but all of the new DAA drugs have HUGE success rates and are just getting better and better so you have an EXTREMELY good chance in being cured of HCV.
Many of us here (myself included) has had HCV for over 40 years and my Viral Load was ~10 Million before treatment.
You are getting treatment relatively early on so your chances of being cured with little or no liver damage is HUGE (that's wonderful news, you should embrace it).
Jimmy is 100% right, as far as your "Trying to not get my hopes too high" ... Forget that strategy, you will be cured and you should approach this with a POSITIVE attitude and do everything possible to help these drugs get rid of the virus.
This includes drinking LOTS of Water (3-4 liters of Water per Day) while on Tx (treatment) and eating as healthy as possible (Lots of fruits, vegetables ... especially Greens to help remove toxins from your system). You should exercise as much as you feel comfortable with, this will help your system but will also help keep your spirits up and positive.
Approach this treatment KNOWING that you will be cured (because you will). Much of the information on the web is WAY outdated and all the bad stuff you read about curing HCV is from early treatment regimes that were very unlike the new DAA treatments out today (treatments today have HUGE success rates). The fact that you are in a Trial is GREAT ... this means that you will have access to some of the greatest drugs ever for curing HCV.
So chin up Emily, YOU WILL BE CURED(there is NO doubt about that) and you are using the latest, cutting edge meds out there to do it ... just be sure to Hydrate (3-4 liters of water per day), eat healthy (no junk foods) and exercise.
You've got this!
Dave
Tig said
May 26, 2016
Hey Emily,
Welcome to the family! I'm so glad you're here and sharing the news that your trial is underway and going well. You have nothing to worry about. The expanded Surveyor 1 trial has proven to be very, very effective. It has only been the last couple of years that treatment success breached the 60-80% rates. Now we routinely witness 90-100% SVR rates routinely.
Here is an article (below) that you may like to review on your trial and if it doesn't make you smile, read it again, because you were in shock the first time! It's all good news and as you've heard from the others, attitude is everything. We insist on positive attitudes here, because there is no reason to think otherwise. Things are really looking good. Keep that thought in mind and plan for success!
Holy Moly!
Put a stamp on that Dragon and send it on it's way!
Great news!
JimmyK
Those are some mighty fine figures Skimily. A competition it is not, but just to put your week 2 results in context mine was 1000.
Thanks for the support y'all!
Waiting another two weeks for more blood results is gonna drive me insane!
Emily,
That's excellent! <25, means it's too low to quantify. The last few stragglers were enough to be seen going down the drain. Next test, you'll be undetected. Just wait and see!
Hi Emily, That report of <25 at your two week check up is VERY VERY good! Your V/L came down quick. I'm a betting man and I'm putting all my chips on you! You got this ome in the bag! Your a dragon slayer. Keep up the good work. RC
Update --
I'm currently at my week 4 visit. Blood will be drawn 3 times, in two hour intervals.
past blood draw results are in , and as of Week 2, my viral load was "less than 25."
so what is left is Week 6 visit, Week 8 visit, and follow ups.
Way to go Howard. Terrific news
That's great Howard.
Syd
Wooohoooooo great news, you are in slaying mode! :D
Congratulations Howard! That's fabulous. If your viral load has dropped significantly, the chance of it being undetected in another 4 weeks is very high. Keep it up!
I went in today for my 5 week appointment. I'm Type 1 A. My levels are about half of what I started with. The nurse said I might be clear by the time I come back in 4 Weeks
3 trials, wow! You must have kissed the Blarney stone and have the gift of the gab!
I was offered 3 different trials. One was 8 weeks & had you staying for 6 hours after your dose with EKG & other test every 2 hours. The other option was even more invasive with a liver biopsy & staying after your dosing for 6 hours also. I don't remember the number of weeks. I took this one on my Doctors recommendation. I'm in & out in less than a hour. They take 7 to 9 vials of blood every visit.
The duplicate threads on ABT-530 and ABT-493 have been merged with the Abbvie ABT 493/530 thread recently but something went wrong and it has reverted to seperate threads. I'm going to attempt it again and then close the copies so we don't have identical topics that are duplicating comments . Thanks.
Hey nra,
Nice about no noticeable sides for you.
Did you, like skimily, get an ABBY trial handout, outlining all the planned dates and events for your trial.
As you and Tig mentioned, your "Expedition 1" trial is 12 weeks, and skimily's trial is 8 weeks. Skimily said she is a GT2b, and I think you mentioned you are waiting for confirmation but thought you might also be a GT 2. Same drugs, similar trials, and (possibly) both of you GT2's. Chinacat I recall is a GT1A.
I am wondering if your trial (and blood draws) is similar to skimily's, in that you too get the same kind of blood draws (with this specific 2 hours thing on day one and at week 4)??
Pablo,
Skimily might have had her cake and ate it too, and, I admit Gilead feeds me well for some reason (I don't know what happened to you!!), but just remember .... some wise person once told me - "there's no such thing as a free lunch"!
Wish we knew how our other lovely ABT493/530 lady "chinacat" is making out! I highly suspect - she is making out VERY well!
-- Edited by Canuck on Monday 30th of May 2016 01:48:46 AM
I get blood draws every visit. I'm glad they do it. They will be able to monitor my progress well.
Im in my 4th week of this trial. I get to start coming in every 2 weeks now. I feel lucky to get in. This med has great promise. I hope to be HVC free in 12 weeks. I have not had a single bad effect from these meds. i try to eat before I take them but some days I just wake up take my meds & go back to sleep. Unless something changes i'm vert happy with this study. I read only 5% have side effects.
-- Edited by NRA4ever on Sunday 29th of May 2016 01:20:57 AM
Lunch, snacks, coffee...what? Why is service in north America always better than Europe? I was on the same trial as Canuck (actually I'm still on it, she's finished) and there were no refreshments provided. Bah humbug!!!
I suppose I'm getting a x3 pill that costs a thousand dollars a tablet so I can't really complain.
Pablo
I too am glad to read about the blood draws and thanks Canuck for going there and Emily for sharing this with us! It is fascinating that ABBVIE does this, says lots for them. I for one am glad I did not have to do that as no veins left in my arms due to my charming past. I look at the phlebotimist and say butterfly to the hand.
Hi skimily,
F 0-1 fibroscan, a falling ALT, and a nice early crashing VL!- really, really good!
Thanks for letting me grill you about the blood draws - and the time and effort it takes on your part to explain it all - but I find it very interesting how much work ABBY does to watch how their drugs perform. Reassuring due diligence in data gathering.
Unfortunately Tig is right with his depiction of the pin cushion - you get to contribute to the data by doing the hard part! Steel yourself for the draws by thinking nice thoughts, every drop (and every bit of data they gather) is helping you, it helps them, and thus in turn may help others in future. You say they gave you a wee snack and coffee while being their human pin cushion?? - hmph, I got you beat, Gilead kindly gives me a whole big lunch every draw!!! hee hee
If I have this right, you have had Week 1 and Week 2 draws done, and are now waiting for your Week 4 draws - perhaps they will tell you what your VL's and ALT's were (at Week One and Two) while you are waiting for Week 4? That would be nice if they would let you know the results, as you may very well have some positive feedback there to be gloating over!
Yer doing good.
C.
Emily,
Seeing a reduction of your liver enzymes is a very positive sign that improvements are already beginning. A lower ALT tells me there is a reduction in the inflammation. Good for you!
Now as far as all those blood draws, I'll let this picture tell you what I'm thinking! If they keep taking it, they may have to give some back, lol!
Canuck - It is to my understanding that my blood is drawn in intervals to see how the medicine is metabolizing in my blood. Is metabolizing the right word..? I guess they want to see how long it takes my body to do something with it. They also want to see if my body is building a resistance to the medication.
To be very specific, the run down so far has been -
Day 1 - fasted. blood drawn. medication given with a snack. coffee time!! :) 2 hours later, blood drawn. 2 hours later, blood drawn. 2 hours later, blood drawn.
Day 3 - did not fast. took medication at home. blood drawn.
Week 1 - did not fast. took medication at home. blood drawn.
Week 2 - did not fast. took medication at home. blood drawn.
Week 4 - asked to not take medication until I get there, after 1st blood draw. She said I don't have to fast, but if I can, I should. So I probably will. 2 hours later, blood draw. And then I will receive my next month's worth of medication.
Also, my Day 3 results showed that my ALT level has lowered to a more normal range. But I thought that didn't really matter much?
wmlj1960 - I'm not sure about my score on the "A" thing. What I do know, is that my liver seems to be in great shape currently. I had blood work done at GI office, that was supposed to tell me if I have liver scarring. Didn't hear anything negative there. I had a fibroscan; my score was very low - F0-F1 range. The results of my liver biopsy showed F1. There has been no mention of significant scarring of my liver.
Hi skimily,
Thanks so much for sharing about you (and your trial). I too felt much gratitude in getting into a trial, getting the opportunity to get trial drugs, and for the kind people who helped me along the way (mine - sof/vel/vox 8 weeks).
I too, like you, was motivated.
The trail handout information (you refer to) IS handy, helpful, isn't it - I assume your trial handout was much like mine in that it helps to spell out every event/test/date planned for the duration of treatment/follow-ups, and lists some possible sides.
I was particularly (VERY) interested in your description of the blood draws, the 4 draws on Day One (spaced out 2 hours apart), and then all blood draws after that also being done in 2 draws (split 2 hours apart). I am real curious and intrigued about that!
IF i may ask ... on Day One - did they ask you to arrive fasting, then did one or two blood draws while you were fasting, and then asked you to take your first pill (and perhaps have something to eat) somewhere in the middle of the 4 blood draws??
Also, for all your subsequent blood draws (Day Three for example), did you arrive fasting and have blood drawn while fasting, then, after you had a eaten and after you had consume your Day 3 pill, they drew blood again 2 hours later?? Maybe I am misunderstanding you, and it was ONLY to be the Day One and Week 4 bloods that are drawn in this 2 hours split fashion. Either way it is still different and they must have a reason
They must be looking for some very specific measurement in your trial. QUITE interesting (to me)!! I am really wondering what specific parameter they wish to see by separating your blood draws 2 hours apart.
In my trial, I must arrive fasting for a blood draw. But blood is collected all at once while fasting, then it's lunch and pilltime, and I do not have to have any second blood draw 2 hours later like you.
Did they ever explain to you why your blood is drawn in this 2 hour split fashion?? Did they tell you what your prior ALT was and what your ALT is now??
I am so glad you have had such a wonderful crash of your VL - no doubt this pleased your doc!
You are doing SO well (in every way)!
C.
I'm taking ABT 493-ABT530 100mg/40mg tablets. I take 3 per day. I had to get my pill bottle to get the info. I have blood draws every visit plus a drug scan. I quit drinking & drugs in 87 so the drug test are not a problem. I have fatigue quite often & I itch a lot. I started 2 week visits now. I will get more info on my condition & what type Hep C I have. I know i have cirrhosis but not how much yet. I am getting a MRI soon to find out how bad it is. I had to have 6 months of HVC treatment to get in my study. I have osteoarthritis in most of my joints. This appeared after I had Lyme & Rocky Mountain Spotted fever in 02. It has gotten so bad I had to quit working & get in disability last year. I'm glad I found this site. I didn't know I had HVC till Feb of this year. I hope to learn from this site & hope to use it to help others. Lets get HVC free!
Howard,
Here's another link to information:
ABBVIE ABT 493/530
Being in recovery from a long history of drug abuse and alcoholism I have found this to be far from what I am experiencing. Today my #1 priority is staying sober and helping others to recover. My negative past has turned out to be a very valuable asset in doing both. I never got ran over by a train but I got ran over by a truck and as it turned out, living through that has given me a new appreciation for life and I enjoy every day of it now more than ever. You can deal with this and will come out of it cured of Hep C and with a new appreciation for living a healthy life and being able to raise your boy. 8 weeks is going to be done before you know it and you're going to be an example in the future for someone else fearful or doubtful facing treatment.
With an attitude like that you cannot fail!
The liver biopsy provides information on both the grade (degree of inflammation that reflects ongoing liver disease injury) and the stage (amount of currently established fibrosis).
The main determinants of inflammatory activity are lymphocytic piecemeal necrosis, lobular necroinflammation, and portal inflammation, which are graded 0 to 4. These grades will be reported as A0, A1, A2, A3, A4 on your biopsy results.
The main determinants of fibrosis are the length in expansion of fibrotic areas between portal tracts and these changes are staged 0 to 4 in the classification systems. These stages will be reported as F0, F1, F2, F3, F4
Do you have the biopsy results termed in this way?
Welcome to the forum Emily!
-- Edited by wmlj1960 on Saturday 28th of May 2016 04:27:41 PM
I will get more information about the trial and post it here. I got HVC in 67 from a blood transfusion.
Your trial is named "Expedition 1" and is a 12 week open trial of ABT 493/530. The protocol is pan genotypic and has proven very effective thus far. I'll dig up some specifics when I can, but the high SVR rates for this drug combo are listed in several articles online and here. Use our search function above and you'll find our discussions.
Here is the Clinicaltrial.gov link:
Expedition-1
I'll have to research that descriptor and get back on that. These trials have several reference names. Do you have any paperwork listing the trial by name? Like Surveyor 1 or 2 or a Clinicaltrials.gov number? Your genotype, fibrosis level and anything else you feel like adding to your bio and signature are helpful when replying.
Hi nra,
So, you are 3 weeks into a trial? of abt493/530 . Would love to hear more! Like - what is the length of your treatment, your GT, your VL, your history. If i have read your entries correctly thus far, and you are 3 weeks into these drugs, that is very nice, that we now know 3 of you here, who are now on this regime. Hope to hear more from you. Thanks for posting.
C.
I'm lookin for info on M14-172 study's. I'm 3 weeks into it. I want to know more about it
Hey NRA,
What are you looking for? This trial or trying to share a link? Welcome to the forum!
Hi Skimily
By compounds I meant medications in the trial so thanks for the info. So many new DAAs on the market/coming to market soon; it's exciting. Now all we need is for a CEO/board of directors of one of the big pharma making these DAAs to make a moral decision to price them so they are affordable.
Pablo
Hi Skimily,
im not well versed in all the different DAA's on trial now but I do know that for your viral load to drop that much in 3 days what you're on must be pretty effective. I too am a Genome 2 and it makes me happy to see that this type is being included in some trials. It's supposed to be the easiest to treat, but without treatment it gets the liver as surEly as all any other genome type.
I really admire your dedication and strength as you go about fighting this. You're doing this for your partner and your seven year old too so that must make it easier to cope with the symptoms and the roller coaster ride.
next time you see your health care people, ask for the results of the biopsy and what exactly it means. Since you have "only" had the virus for a relatively short time, you might come out of this with a very healthy, or only mildly damaged liver, which will return to normal given time.
Good luck with it all,
Syd
Hi Emily and welcome to this family. These new generation DAA's are the ticket. You will do fine. Best wishes and thanks for sharing your story. Chris
Really glad to hear you are doing well on this protocol and I know having little one(s) and being on treatment is not the easiest thing but remember God doesn't give you more than you can handle and the program gives you the tools to handle it
When I was on interferon my twins were babies and thank God my mom was still around as I needed the help! Fortunately for me and you, these newer treatments are more tolerable.
It's ok to look at the past, just don't stare too long. One day your past will help someone else in the rooms. Of this I am sure.
wendy
Good morning! Thank you so much for the positivity and support :) I am trying my best to keep a positive mindset about all this. Perhaps I am in some kind of disbelief that I could get so lucky, so fast after dx, to have been referred to participate in this study. I feel incredibly grateful for the chance to eventually put all this behind me, and to be in connection with some really amazing healthcare professionals. In the beginning, I wasn't expecting for them to care as much as they do. The doctor at the hospital research center said to me - "You will be cured. That is my dedication to you." I was like wow. But at the same time, there is a lot of fear. For years, possibly having hepc was in the back of my mind. I want to have more children and eventually get married to the man I am dating - so I up and decided one day that I wanted to know for sure. As sad as the news made me, I don't regret the choice to take control of my health. In the rooms, they say when you get sober, your past might catch up to you and run you over like a train (or something lol). I can, and will, deal with this with strength. I won't let this bring me down. It's just an added reason as to why maintaining sobriety is important.
In regards to Pablito's request on info about the compounds and trial - I have no idea what you mean by compound lol. I pulled out my super thick trial paperwork, though, so I could look up what you would like to know. You are all very much more versed than me on all this! I have only been reading about it all since December. What I can tell you, though, is that it is Surveyor II. Every morning, I take three 100mg/40mg ABT493/ABT530 pills. My phase receives no RBV. It will last 8 weeks, unless the participants in general seem to need to be extended to 12. In earlier phases (?) participants have reported fatigue, dizziness, nausea, headaches. I have not experienced any of those, besides what is normal for me. I'm a mother of a 7 yr old boy, and also a waitress - so I'm used to fatigue and headaches lol. And i believe I am Arm S, but don't hold me to that. My blood was drawn on Day 1, 4 times, in 2 hour intervals. Again on Day 3, Week 1, Week 2, and in two weeks I go back for Week 4's 2 blood draws spaced out between 2 hours.
To get into the study, I needed to either have had been diagnosed with chronic hepc for at least 6 months, or a liver biopsy showing so. Since I was officially diagnosed in December, I needed to have the biopsy to participate. That part was a little terrifying, but I figured hey, I'm in pretty deep already, might as well just go for it. It's pretty weird to be excited to hear "we got your results back, and your liver does show chronic hepatitis C."
The research they did with animals + pregnancy showed no adverse effects. But I am asked to used two forms of birth control up until 6 months after EOT. They're not sure of adverse effects of the meds + pregnancy in humans, so better safe than sorry, for sure.
And I will try to drink more water! I run entirely too much on just coffee. But I recently read coffee is good for the liver, so thats my new excuse for drinking it so much ;)
-- Edited by Skimily on Friday 27th of May 2016 08:09:39 AM
-- Edited by Skimily on Friday 27th of May 2016 08:11:22 AM
Hi Emily and welcome!!
I`m very pleased to see you`re 2 weeks into this Abbvie trial and responding so well! I can understand you feeling that you need to buffer yourself against potential disappointment, but seriously, you have every reason to be very optimistic about the liklihood of achieving SVR with this excellent and very effective drug combo.
Congratulations on staying clean and sober for over 2 years, I know it takes a lot of will power and determination, which you obviously have, so try not to feel nervous about this trial, you have a wonderful opportunity here to free yourself from Hep C so relax and take it in your stride!
Please do keep us updated on your progress... and good luck!
This 493-530 combo added to Viekira PAK Would just about get all hcv types. It will be effective . I was offered this trial, turned it down for the Polaris trial, and that didn't go so well. Both of you made it onto a good trial, and I think your both doing well. RC
Hi skimily (and chinacat),
Great!!! results from these ABT drugs 493/530. Good for you two!! You are lucky to get this regime!
Looking at the prior study data, about this relatively new drug regime (493 being the NS3/4A, and 530 being the NS5A), it sounded VERY good, but NOW, with you two posting your (actual) trial stories, we can ALL see for ourselves just how wonderfully well these drugs are working, (for you as a 2b and chinacat as a 1a).
Good job! Keep posting.
C.
This is exiting stuff really. Congrats all you people, it is making a much brighter future for a lot of people. I used to dread reading some of the threads a few years back , people really had a rough ride. Now new people will read these threads and think, yes please, me next!
Yay for trials and you brave people on them. :D
Thanks.
I never could figure the reason for washing a Hog unless it had two wheels.
This thread has been merged together with the Abbvie 493/530 thread. Better to keep one thread going instead of starting multiples of the same thing. Thank you!
Jimmy,
hogwash
-- Edited by Linuxter on Thursday 26th of May 2016 04:28:34 PM
I think we have dueling threads going on here ... much easier to follow if one or the other is used to discuss this if possible.
Dave
Hi Emily,
Welcome to the forum, we're glad you're here!
First off, Congrats on being Drug-Free!
Also, Congrats for getting on the trial ... that's wonderful news.
You should be aware that GenoType 2b is the easiest of all genotypes to cure, there is a VERY high success rate even with drugs that are not the latest, cutting edge drugs. I don't know much about the trial that you are on but all of the new DAA drugs have HUGE success rates and are just getting better and better so you have an EXTREMELY good chance in being cured of HCV.
Many of us here (myself included) has had HCV for over 40 years and my Viral Load was ~10 Million before treatment.
You are getting treatment relatively early on so your chances of being cured with little or no liver damage is HUGE (that's wonderful news, you should embrace it).
Jimmy is 100% right, as far as your "Trying to not get my hopes too high" ... Forget that strategy, you will be cured and you should approach this with a POSITIVE attitude and do everything possible to help these drugs get rid of the virus.
This includes drinking LOTS of Water (3-4 liters of Water per Day) while on Tx (treatment) and eating as healthy as possible (Lots of fruits, vegetables ... especially Greens to help remove toxins from your system). You should exercise as much as you feel comfortable with, this will help your system but will also help keep your spirits up and positive.
Approach this treatment KNOWING that you will be cured (because you will). Much of the information on the web is WAY outdated and all the bad stuff you read about curing HCV is from early treatment regimes that were very unlike the new DAA treatments out today (treatments today have HUGE success rates). The fact that you are in a Trial is GREAT ... this means that you will have access to some of the greatest drugs ever for curing HCV.
So chin up Emily, YOU WILL BE CURED (there is NO doubt about that) and you are using the latest, cutting edge meds out there to do it ... just be sure to Hydrate (3-4 liters of water per day), eat healthy (no junk foods) and exercise.
You've got this!
Dave
Hey Emily,
Welcome to the family! I'm so glad you're here and sharing the news that your trial is underway and going well. You have nothing to worry about. The expanded Surveyor 1 trial has proven to be very, very effective. It has only been the last couple of years that treatment success breached the 60-80% rates. Now we routinely witness 90-100% SVR rates routinely.
Here is an article (below) that you may like to review on your trial and if it doesn't make you smile, read it again, because you were in shock the first time! It's all good news and as you've heard from the others, attitude is everything. We insist on positive attitudes here, because there is no reason to think otherwise. Things are really looking good. Keep that thought in mind and plan for success!
ABT 493/530