Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: Is my journey starting ?????


Member

Status: Offline
Posts: 16
Date:
RE: Is my journey starting ?????
Permalink  
 


Eight up towards week 8 blood tests which are due next Tuesday.

 

right up to today it is definitively not as simple as I thought.

my mind is in a really mess, and I can hardly sleep three hours at night.

I feel angry towards everyone and everything and smetimes I really feel it is time to enter my cloud and lock me in.

worse of it is that my heart is really pushing it hard and I quite often feel like it will came out from my shoulders .

doctors told me to check out for Tyrodes Values but they seem to be ok.

RIBA collaterals or just stressed Italian fourty man ?

btw the week 1 blood results were good but no other results were given.

hope to get some more stuff next Tuesday ..... Towards the end....

 

 



__________________


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Shadow, sorry to hear you`re having a rough time.  I must say this sounds like typical riba side effects, and maybe a little stress on top.  Try and set aside some time each day to relax and unwind, and do your best to avoid situations which are going to cause you stress, if that`s possible.  I remember feeling just the same when I was on my peg/riba treatment, I know how it feels!

I`m not sure what you mean by `Tyrodes Values`, are you talking about your thyroid levels?

Not too much longer for you now anyway, are you doing 12 weeks?  Best of luck with your results when you get them!

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Senior Member

Status: Offline
Posts: 124
Date:
Permalink  
 

Welcome from Canada !  I hope everything works out for you. I refused the Interferon as well and am in the Turquoise II study for 24 weeks. Good Luck!

 



__________________

Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Excellent VL result, Shadow, down to less than 25 in one week!!  Congrats!  biggrin

Yes, definitely amazing, and how wonderful for you after spending 12 weeks on the placebo arm. 

You have a very good incentive to carry on now, thanks for sharing your great news!



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Just received the VL FOR WEEK 1

 

<25 !!!!!!

 

THIS IS AMAZING, THESE DRUGS ARE AMAZING........



__________________


Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Hey Shadow, Congrats

Now that is Fantastic results, in a day or so you should be receiving your new viral load results as well.

That result should also be very good. So keep up the good habits, they are working for you.

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Shadow, that is amazing in just one week!   The liver enzymes GOT and GPT are more usually known here as AST and ALT, and it`s very good news that they are already back to normal levels.

Best of luck with your next results, keep us updated!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

ok... week 2 visit today.

 

As a surprise I got my week 1 results but RNA: all GOT/GPT are NORMAL !!!!! and this is just after one week of treatment.

 

I am really waiting for RNA at this point.... 

 

G

 



__________________


Senior Member

Status: Offline
Posts: 227
Date:
Permalink  
 

Your on the right track now Shadow. Let them pills kick some dragon ____biggrin



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

good luck Shadow time for some real protein inhibiting of that pesky liver occupier



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Sorry to hear this, Shadow, you did have your doubts right the way through though.  Oh well, now for the real stuff!  Well done for going through the process though, it`s stressful anyway not knowing. 

Best of luck, keep us posted!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

Status: Offline
Posts: 820
Date:
Permalink  
 

Ok Shadow, i been reading this and i figured you were on placebo. But didn't want to comment. So Now your gonna start kicking sum dragon ass...Very good luck to you.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

here it goes...

 

 

week 12... the study was unblinded and as imagined I have been on the placebo arm for 12 weeks...

Tomorrow 9 am.... the drugs will start their job.... GO AND KILL 'HEM ALL FOLKS.....

 

more hopefully to come....

 



__________________


Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Week ten visit and nothing new under the sun.

On july the 15th the study will be unblinded.....



__________________


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Thanks for the updates, Shadow, as they say.. `no news is good news`...and you`re getting through it.  Keep going, not long now!

Best of luck, keep us posted..smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Week 6 visit last Monday....

 

no news... Good news.....

 

half way into this...

 

more to come in 6 weeks....

 

 



__________________


Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Week 4 visit.

 

seems to trial coordinator I might really be  on placebo as no SE at all.....

no additional news...

alt/ast seem to be as in the really beginning days.... More less x4

they say on this trial alt and ast will be the last ones to normalize in case of und.

btw they took my blood and a quantification is going to be done.

in 15 days I will know whether I lowed RNA or I'm in the placebo arm.

 

any ideas on this ?

 

 



__________________


Senior Member

Status: Offline
Posts: 161
Date:
Permalink  
 

I started out on first twelve weeks placebo....Just keep your chin up and know at the end of your tunnel is a rainbow. I try to see the positive in everything. I'm on week 5 of real drugs now just a couple of SX.



__________________

Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Week 2 visit today.

just pills counted and new appointment in 15 days fixed.

no news on the tests but alt/ast of week 1 blood results: both increased compared to the beginning of the trial but trial coordinator replied it MAY be an effect of the pills or I may simply be on Placebo....

In the end no news is always good news.

 

updates in 15 days....

 

G



__________________


Member

Status: Offline
Posts: 21
Date:
Permalink  
 

Hang in there. Treat yourself as if you are well and the body tends to respond! Alan



__________________

41 yrs old. Type 1b, with cirrhosis in Abbott clinical trial. Undetectable since week 4 April 5, 2013.



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Shadow, I think everyone who is on a `blind` arm of a trial has the same concerns and worries.  It must be very frustrating for you not knowing, and wondering all the time whether you are feeling side effects or not.   Just keep going day by day...and be glad you`re feeling ok! 

Best of luck, and keep us posted!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

End of week 1: so far so good.

of course I've no idea whether I'm getting the drug or placebo, but as far as today I feel ok.

I might say that I feel fatigued but I think is my mind doing this to me, as I felt fatigued before starting as well....

by he way I will meet my Trial coordinator this week for week 1 visit.....

g



__________________


Guru

Status: Offline
Posts: 895
Date:
Permalink  
 

This is so fantastic, I am looking forward to these drugs becoming available on perscription. :D



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

u lucky lucky lucky folks i would swap my sx anytime for yours ;-D



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




Veteran Member

Status: Offline
Posts: 97
Date:
Permalink  
 

Hi Shadow,

                day 10 and the only SX is a little bit itching. I know I am not on placebo. I started on april 15 from 10.5 Millionen and the decrease was to 1148 on day 4.

Up to the result i was sure I am on placebo. An other person, starting mid march told me, he is only more aggressive than before, and he knows also, he is not on placebo.

There is a real chance to be not in placebo without SX.

 

best wish

 



__________________


Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Day three.... just like day 0,1 and 2....

So no SX at all.

Once in a while I feel a bit hot in my hands... that's all for now.

oh yes...there one thing: I missed my 12 hours appointment with the pills... and didnt have time to have dinner before them..... so I swallowed them all without food and told myself: If I feel stomachache it will mean I'm not on placebo.....

 

Two hours passed..... and I still feel ok.

My coordinator emailed me this afternoon and asked about SX..... I told her: Hey you, you gave me the worng ones, but she replied she hasn't got everyone on the trial to report SX.....

 

May I'm still into it and this will mean these drugs will change the world.

G



__________________


Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Day2:.... took pills... And went to work....

routine as usual.

no SX, but a bit confused.... Somehow willing to get some nausea to understatend if I got it or not....

only experiencing a bit of itch on my legs... Wonder if my mind is doing this to me....

nausea  come to me ! wink

 

I will update if good news arise....

 

 



__________________


Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

in my experience, Riba sx started to showup on 3rd week...but it's nothing compared to Interferon, belive me so you are very lucky to be on daa+riba therapy ;-D

all the best



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Well......

it was a kind of hard day.... 

Not for any side effects but for feelings and emotions.

day one today: blood drawn and EKG plus a few papers to sign.

in the end I got my one month collection of pills, and two cans of rbv which for someone who had asked, in my case are grey.

 

as far as now, after 6 hours from first 6 pills, no side effects at all. Not even fatigue or whatever....

 

coordinator says that if we got real drugs and not placebo, viral load should be negative by three days but we won't know it until the end of the first three months.....

G



__________________


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Congrats on getting started, Shadow!  It probably seems a long time to wait until you find out for sure, but I expect the time will fly by.   Just keep going...and best of luck!

By the way, I`ve joined both of your threads together into this one, so we can follow your progress more easily. 

Keep us posted!  smile   ~ Jill

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

Hi Shadow, wow cool u have made it on clinical trial! I didn't know about Abbott's trials in Italy, cool u have found it!

all the best and don't worry these new DAA drugs from Abbott and Gilead seems to be VERY effective

best





__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




Senior Member

Status: Offline
Posts: 161
Date:
Permalink  
 

Congrats!!! Today will be a piece of cake for you. I only had to do a EKG on my first day and my day before my 2nd twelve weeks as I was on placebo the first twelve. Let us know how everything went.



__________________

Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

monday is the day......

keep posting....

 

Thanks a lot for all the kind public and private words

G



__________________


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi again, G, that`s great news, congrats!  Good luck with your journey, and I hope you reach your desired destination!  smile

Keep in touch!  ~ Jill



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Hey Shadow74

Welcome and congrats to being enrolled into the Abbott Labs Sapphire Trial.

It will go fast , read the many threads that the forum has both on the Abbott Sapphire and the Turquoise II to get an idea whats in store for you. They both use the same drugs.

Hoping the best for you

Matt

 



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Called this afternoon by abt sapphire trial coordinator.

"hey man he said, next bus leaves next morning 8.30 Cet, destination Hcv UNDETECTION station.

Uhm ..... What's the ticket price I asked....

well.... a few Cl of blood.... eCG... And a few pills... Those are daily....for at least 3 months... Or 6....

but you will be randomized.....

 

this is quite a strange word here.... Fully not understandable ... But in the end it means that the journey is starting for me ......

maybe those will be placebo.... But then.... I will be taking pills...real ones.....

 

 

I couldn't believe the news today.... I can close my eyes and maybe make Hcv go away......

 

 

G

 

 

 



__________________


Member

Status: Offline
Posts: 16
Date:
RE: Trials.....
Permalink  
 


Thanks everybody for the kind welcome.

I might have understood blood is flying to somewhere in Europe to be analysed and then the trial coordinator will shout out "in" or "out".

what's your experience with the company ? Strict ? Very strict ? Extremely strict ???

I am a bit scared that out of months of vampires, my blood may show some surprises.....

 

regards

g



__________________


Senior Member

Status: Offline
Posts: 413
Date:
Permalink  
 

74, welcome. Hope you get in or if not another study.

If you're at all interested in some snow, we might get anywhere from 8-24 inches soon. I can send some your way. Making Snowmen in your yard might be a good way to pass the time.

Vern



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.



Guru

Status: Offline
Posts: 820
Date:
Permalink  
 

Welcome G,



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi and welcome, Shadow!  I`m glad you`re bringing us some sunshine from Italy!  smile

Going through all the preliminary procedures is bound to be stressful, do let us know if you are accepted into the trial.

All the best of luck!  ~ Jill



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Ciao Giuseppe 

Abbott is very strict but they let you do one retest if you are close to their pre determined qualifing numbers.

Your study coordinator has a special insert from her study book that lists Abbotts requirements of the blood work. I had to ask her for a copy of it.

I always thought it was a good idea to know my own Blood labs before I went to get tested.

In the states (US) we can walk into a local lab have our blood drawn and secure our own data without having to go through a Doctor.

But now you just have to wait, can you secure your own lab data somewhere?

It might be helpful because, the results of blood work can vari from day to day and site to site.

Anyway wish the best for you.

Matt



-- Edited by Matt Chris on Tuesday 9th of April 2013 09:42:53 PM

__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

EvenIng from sunny Italy.

After a long wait.... My lab results went high and doctors decided it's time for a therapy.

due to some personal reasons I refused to have peg shoots and started looking out for trials with pills when crashing into Abbott sapphire as a naive 1b non cirrothic F3 9.5 

at the time being I'm into a preluminary phase when they drawn liters of blood and find out whether you are eligible or not..... So you can imagine how stressed I can be.....

 

evileye in a few days I will finally know if I am enrolled into it or noI'm..

my kindest regards to everyone in this forum.

When I read someone is UND I smile......



__________________


Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Ciao Giuseppe and Benvento to the forum

Pulling for you to make it into the Abbott study, their are many members currently in the study. Make sure you read there threads if you have not yet, it will be very helpful.

There are members from around the entire world that post on a regular basis.

Ciao, Ciao

Matt



-- Edited by Matt Chris on Monday 8th of April 2013 04:12:47 AM

__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.