Hep C Discussion Forum

Cinnamon Girl · Guru

Abbott Labs TURQUOISE-II Open label clinical trial

LUV2RYDE · Senior Member

Matt,

I agree with ya on the trained Psychiatrist and trained nutritionist to prepare us for the mental and physical aspect and during and after treatment. I am sending tons of positive thoughts and prayers your way my friend.

Trish

Matt Chris wrote:
Post treatment 4 weeks observations
Had my EOT 4 weeks appointment on Monday with trial Doc. and blood draw, Doc made a big deal about this being the most important week to remain UND , I am hopefully optimistic. Weeks 1 and 2 were UND and that was after getting a head Cold from the cruise and the next week spraining my knee after falling of a ladder, what else can go wrong?
The week before the visit was great, no slight liver inflammations and no noticeable lower liver area weird anomalies. Then came Sunday before the EOT 4 appointment, and a up and down day with some liver inflammation ending with long bike ride and now my hot water heating needs replacing and I feel like crap.
This EOT time is driving me CRAZY, being hyper aware of every little inflammation and every twitch and feeling that comes and go's in my liver and Gastro area is driving me MAD.
I did have one very real pain in my lower tip of my right liver on late Monday afternoon unlike anything I have ever had before. I would describe it like a biting , prickly small sharp pain when I breathed in and lasted for about 7 minutes or so but it never came back. The Only thing I can attribute it to would be a strange mixture of vitamins and a green drink that I never mixed before together.
That got me concerned and started the whole doubting minds games scenario that we all have to deal with being on HCV treatments, it's has got to be one of the most challenging things I have ever done in my life. Trying to stay positive and alway worrying about the virus reemerging.
This trial and all the others should have a trained Psychiatrist and trained nutritionist to prepare us for the mental and physical aspect and during and after treatment.
Going into these trials blindly with no foreknowledge is a big mistake, having to feel our way is like being blind and walking in a forest. Thank God for this forum and all it's members, we have each other to bounce off are thoughts and feeling to each other.
So now I wait a week for the lab results, trying to maintain the positive vision, but it's just not that easy.
Matt

garfield · Veteran Member

Hi Matt,

I think nothing of the things happened in recent days, can have to do with a relapse or with the treatment, so keep calm.

With best wishes

Matt Chris · Guru

Post treatment 4 weeks observations

Had my EOT 4 weeks appointment on Monday with trial Doc. and blood draw, Doc made a big deal about this being the most important week to remain UND , I am hopefully optimistic. Weeks 1 and 2 were UND and that was after getting a head Cold from the cruise and the next week spraining my knee after falling of a ladder, what else can go wrong?

The week before the visit was great, no slight liver inflammations and no noticeable lower liver area weird anomalies. Then came Sunday before the EOT 4 appointment, and a up and down day with some liver inflammation ending with long bike ride and now my hot water heating needs replacing and I feel like crap.

This EOT time is driving me CRAZY, being hyper aware of every little inflammation and every twitch and feeling that comes and go's in my liver and Gastro area is driving me MAD.

I did have one very real pain in my lower tip of my right liver on late Monday afternoon unlike anything I have ever had before. I would describe it like a biting , prickly small sharp pain when I breathed in and lasted for about 7 minutes or so but it never came back. The Only thing I can attribute it to would be a strange mixture of vitamins and a green drink that I never mixed before together.

That got me concerned and started the whole doubting minds games scenario that we all have to deal with being on HCV treatments, it's has got to be one of the most challenging things I have ever done in my life. Trying to stay positive and alway worrying about the virus reemerging.

This trial and all the others should have a trained Psychiatrist and trained nutritionist to prepare us for the mental and physical aspect and during and after treatment.

Going into these trials blindly with no foreknowledge is a big mistake, having to feel our way is like being blind and walking in a forest. Thank God for this forum and all it's members, we have each other to bounce off are thoughts and feeling to each other.

So now I wait a week for the lab results, trying to maintain the positive vision, but it's just not that easy.

Matt

Matt Chris · Guru

Hey Balagan51

Congrats on making it to 16 weeks UND, that long monthly wait can be a mind game but we all have to deal with it.

Sound like you found a way to deal with your side effects, that important for your own sanity.

keep the UND coming.

I am still UND after EOT through 2 weeks with my 4 week blood test in three days

Like John Lennon wrote "we keep playing these mind games" its a real test to keep a positive focus 100% of the time.

Best way is to keep busy and around positive people with good news.

Hoping the best for all members,

Zoning in on my Strategy for EOT

Matt

Biggyb · Guru

balagan51 wrote:
Just got some remarkable news!
UND @16 weeks!

Very good news balagan51, keep fighting the good fight, this damn dragon will not win, we shall overcome..

balagan51 · Veteran Member

Just got some remarkable news!

UND @16 weeks!

I was working lunch at my restaurant and had to leave It shook me up so much .

I have been on pins and needles these past 4 weeks since my last draw as I have judiciously been taking muscle relaxers and pain pills since March 4.

Flexiril .05mg & .05mg of Dilaudid.

After 16 weeks I am finally experiencing some slight sides.

I have some joint pain in a couple of fingers, elbow and neck confuse .

I am having some nausea and heartburn with a lot of insomnia. They have prescribed Ativan for sleep.

I havent experienced full on Riba Rage, but if I dont do my Meditation my fuse can get short.

(As someone who went through IFN & Ribavirin, I can assure you I know all about that. Its horrible!!)

Going on week 18 today, finishing up July 17. It sure seems to be passing fast

Best of luck to all in their respective Clinical Trails and thanks to Jill and the other moderators for giving us a space to share.

Geno 1b, TT, cirrhotic. Null responder IFN Riba 2005

-- Edited by balagan51 on Thursday 30th of May 2013 12:50:05 PM

52baddog · Senior Member

Hi Matt:

I have not started treatment yet, because I was taking milk thistle the nurse told me that I have to start in June so, I guess the milk thistle is out of my system. So, it will be the first week of June.

52baddog · Senior Member

Thanks Malcolm for explaining, as far as vitamin c IV my hepatolgist told me that I was wasting my money:)

mallani · Guru

Hi Nancy,

Sorry to butt in on Chris's thread. You will test +ve to the HepC antibody but your Viral Load will be undetectable if you achieve SVR. This does not mean you have no circulating virus- it's just that the amount is so small, the body can confine it with the autoimmune system. This residual virus may remain for years and as we get more and more SVR's to follow, the researchers will tell us the full story in due course.

I don't dare comment on IV Vitamin C. My views on messing with nature and the body's normal functions are well known. Just be sure you are aware of the dangers of an unproven therapy. Cheers.

Matt Chris · Guru

Balagan51

It sounds like the Ribavirin is having its way with you.

That stuff messes with a person mind and body, for me it's made me very short tempered with my wife and close friends.

I noticed that that fast jerky temper departed within a few days off the stuff.

Best advice would to deal with it the best you can with the few weeks you have left, and just think how hard it is for our members that take both Ribavirin and Interferon for a entire year that is really intense.

Matt

balagan51 · Veteran Member

my friend is around 58-60

I don't think the neck is related to anything but a bad move while i was exercising. I don't think it has anything to do with treatment

Today i started out with an Oxford trained physician , who is also a board certified Chinese Doctor (acupuncturist). T

This afternoon I got a massage and tonight I was treated with a laser by a Chiropractor.

These aren't isolated appointments in my daily routine. I had almost turned the corner with this last week and a Physical therapist pushed just a tad too hard.

This is what has me concerned. I haven't been able to do anything but be on time with my medication, drink water and try and eat right.

Whoever coined the phrase "pain in the neck) wasn't kiddin!

i hope my buddy Bruce is right........

we are all we have on this journey...

Thanks for your concern.

Matt Chris · Guru

Hey Balagan51

That's a amazing story, how old was your friend?

Also Balagan do you think that your neck issue not resolving is related to the trial Meds?

You know your body better than anyone else, but perhaps acupuncture or some other therapy would help release your pain.

hope the best

Matt

Matt Chris · Guru

Hey 52Baddog

Your the first I heard of trying that therapy with chronic HCV. Typical it's used to treat acute or new infections. You should checkout the Lipo Spheric encapsulation it's absorption rivals that of IV.

I believe the reason we still test positive for HCV even thought we achieve SVR is the test looks for certain antibodies that show the body has once fought against the virus. It's the type of test one has that is part of the problem. Every virus we have ever caught could be tested for and show positive even though we have defeated it.

It's the bodies marvelous way to remember every single cold, virus, and attacker to deal with it in the future.

BTY how is your trial endeavor going?

Matt

52baddog · Senior Member

Matt:

I have been getting vitamin C IVS for one year. It helps with the immune system but, it does not get rid of the virus. My viral load

is 370000 at the moment. In the past year my viral load has gone up and down, the nurse was saying even if you achieve SVR you still show positive for HEP C, which I don't really understand may be Malcolm can explain since he knows so much.

Matt Chris · Guru

Hey Malcolm

Thanks for expounding on the whole SVR discussion.

I agree on most all of the papers written (the Harvard School of Medicine and Mayo clinic research) on the mystery of the immune system and how to stimulate it.

Definitive research with absolute verifiable results on foods, supplements, herbs are hard to come by.

In my opinion the most promising research was done early on by Linus Pauling (1970's Nobel Prize winning chemist) about the value of Vitamin C, other Doctors and researchers have continue to follow his lead in this area. One of the new developments has been with Lipo-spheric encapsulation of vitamin C which can delivery a high degree of the vitamin into the blood stream via its technology.

But your concluding point "eat a healthy, balanced diet, exercise as much as we can and try to avoid stress" is a good general guideline.

So it remains for each of us to decide what foods and drinks make a healthy diet, how much exercise and what kind moves our blood without causing more damage.

To me we still need a approach or a Strategy to from start of treatment through 6 months after treatment to be conscientious or I should say pro-active in maintaining a healthy diet for our immune system.

I really wish I had known all of this before I began treatment I would have planned and approached the time frame differently.

I am especially realizing the bad planing I did now because I caught a head cold after going on a vacation/ Cruise with people from 45 different country's.

The worst part being it was my first week off the Meds and the EOT, when I should be trying to avoid situations that would compromise my immune system I put my self in one of the worst confined environments a cruise ship.

Bad timing to say the least, but I planned and booked to trip way back in October of 2012 way before this Abbott trial ever was announced and started to recruit participants.

Shows one of the disadvantages of being on a trials preset parameters, you can not make adjustment or extent to cover such occurrences.

If I relapse it might be due to this circumstance, but its does not feel like that's going to happen because I have been improving and building up my immune system with healthy diet and physical exercise and spiritually for the last 4 years. We will see what the future holds, Keeping the vision

Matt

balagan51 · Veteran Member

I am having a hard time this last month due to a severe strained neck. I have had to take muscle relaxers and pain medication. I am very afraid it isnt helping me. Even with the trails coordinator not being concerned with what I asked her if it was OK to take.

I was so concerned I reached out to someone on this board about it, but I must have sent the message wrong. As they obviously couldn't have received it. Who would ignore something like an outreach for help? I mean none of us have really anywhere else to go to voice any fears or concerns while undergoing treatment in a clinical trial.

So I emailed a friend who was on triple therapy last year and explained my concerns.

He explained to me while he was on treatment he circled the globe 3 times, ate horribly, was never in one place over 48 hours and was constantly either on a plane, bus, or train. He is the sound engineer for a very well know recording artist.

Hes actually back in Europe now, hence the email. He achieved SVR. Hes still virus free over a year after EOT.

So one has to wonder if anything we do has anything to do with how our DNA is made up and whether of not we clear the virus

Guess I will find out a few days after my 16 week draw next Wednesday 5.22

-- Edited by balagan51 on Friday 17th of May 2013 02:38:59 AM

-- Edited by balagan51 on Friday 17th of May 2013 02:44:36 AM

mallani · Guru

Hi Matt,

It's interesting when Hepatologists talk SVR percentages. Before I started my 48 weeks of Victrelis, I asked about SVR chances. I was told a 69yo male cirrhotic with the IL28B gene CT, with a 30+ year history of HCV would be 40-50%. However as I had responded well to Interferon previously (but relapsed), the odds went up to 50-60%. This was good enough for me. Then, after achieving RVR for Victrelis, I was told that was now 60-70%. After being Undetected through Rx and at EOT, that became a 80% chance. Obviously I was happy to see the percentages go up.

A paper at the Barcelona Liver Meeting last year showed that 95% of relapses occur between 4 and 8 weeks after EOT. I have only seen the abstract, but evidently over 2000 patients were studied. That is why I did not get a VL done at 4 and 8 weeks after EOT, but waited until 12 weeks.

Relapses in cirrhotics are almost certainly due to residual virus in underperfused regenerating liver nodules or in strands of fibrous tissue. These viruses would be RAVs (resistant mutations) and for each DAA, the most prominent RAV has been identified. The source of re-emergent virus in non-cirrhotics is still being debated. These patients have adequate liver perfusion unless they have F3-4 changes. The role of extrahepatic replication is uncertain but this is assumed to be the source of relapse, and again these will be RAVs.

After SVR, there will be a tiny amount of residual virus in most patients, but the immune system has learnt how to cope with these. Boosting the immune system is an appealing idea but in practice, has proven difficult. This is a complex system not a single entity. Researchers have studied diet, age, exercise, stress effects, herbs and supplements etc. without any definite findings. It seems that the immune system becomes less efficient with age, as is evident by vaccinations being less effective. The elderly eat less with a less varied diet, and this may play a part. Exercise promoting blood flow throughout the body is thought to be beneficial, and again the elderly do less exercise. Health shops are full of bottles of various potions that claim to improve the immune system . Researchers have tested every mineral, vitamin and herb without any positive conclusions. I think all we can do is to eat a healthy, balanced diet, exercise as much as we can and try to avoid stress. Sounds easy..................

Matt Chris · Guru

Hey Friends

Had my week 12 EOT visit with the trial study Doc, had the usual physical then the conversation turned to the odds of achieving SVR.

He said if I remain undetected at 4 weeks post treatment I increase my odds to greater than 75%, then I asked what causes a patient to go from undetected to relapsing and how does that happen?

He said the treatment either wipes out the HVC completely or it can leave sequestered small amounts of the virus in the cirrhotic areas of the liver/body that the blood does not flow to because of the nature of being cirrhotic. He said thats why is harder for cirrhotic patients to achieve SVR, then he said the most interesting point of the conversation.

He said the immune system on cirrhotics sometimes does not perform as well or does not have the same innate ability as non-cirrhotics to inhibit and win the fight against reemerging HCV, he also said its how strong your immune system is after the end of treatment and the weeks after that can make the difference in battling any latent, hiding, sequestered HCV.

It really makes me aware of the importance of the whole synergy of being on treatment and the weeks after end of treatment (EOT).

My whole mind set becomes clear for me, treatment whatever the type is to reduce to undetectable or totally vanquish the HCV but it can not stop there. We must have a strategy for the weeks after treatment.

In my opinion we have to keep/boost our immune system to the highest degree to fight the battle and suppress any HCV thats tries to make a re-appearance. Really when you think about it, its almost the same scenario that takes place when we first were infected. People during the acute stage of HCV either clear it because of their immune system response or do not clear it and it becomes chronic HCV.

The bottom line here is having a Strategy for EOT, and concentrating on improving our immune system response from start to finish, because the drugs work in concert with our bodies to reduce the HCV to levels that can be controlled by our bodies immune system.

Though this Doctor's theory seems very plausible I'm sure there is a lot more to achieving and not achieving SVR, but it is lending itself to clarity.

Matt

LUV2RYDE · Senior Member

Matt how cool.....I am so happy for ya. Keep the pictures coming and have a wonderful time!

Matt Chris · Guru

Week 12-13 Update

Finished off the last Meds on Monday May 6th had 5 days left on my cruise vacation to the Fjords of Norway.

The first two days off Meds / tx felt an upsurge of energy, whether it was physical or mental it seemed real enough, by day 3 though now (day 9) I can tell the difference of not being on Ribavirin and the other Meds to a lesser degree. I also sensed a wanted or craving to take my DAA's but left the bottles alone. (the study always gave extra pills in case we somehow lost some)

12 weeks go's by fast even with all the ups and downs I had during the treatment. (nothing compared to SOC) I had wished I had been randomized to 24 weeks but happy to be selected.

I visited my families Scandinavian background in Denmark and Norway and learned a lot about why I am the way I am. One important fact I continued to learn was Scandinavia and Europe are miles ahead of the USA in their Ecology and making their food supply healthy and chemical free, which bodes well for Hep C patients.

My next post will be talking about my Doctor visit at EOT, interesting thought about Strategy for EOT.

Including a picture of a view from a mountain top in Alesund, Norway

Randy in Alesund.jpg

JoAnneh · Guru

I focus on one day at a time! No since worrying
about tomorrow
And miss the beauty of today.

Count my blessings and not my burdens.

Stay busy!!!
I have had lots of time to study Gods word
While on treatment. I love studying OT!

Forum has helped me thru many tough spots.
For thankful to be off tx--2 weeks post!
Starting to feel improvements.

Have fun Matt on your trip!!!! Awesome adventure.

Freshhope · Member

Matt, enjoy the cruise. I envy you as I'm on the 24 weeks and still have 16 to go! I had the same issue with my bilirubin but fortunately mine dropped as well. Stay undetected and we will hear from you again when you are detectable but your virus isn't! Alan

Biggyb · Guru

Great news matt, keep it going.

Karen · Senior Member

Wonderful news Matt...

Stay clear of those mid-night buffets...don't want you to come back fat and sassy! Happy cruising....much deserved!

LUV2RYDE · Senior Member

Matt.....I am so,so,so Happy for you! I hope you have a wonderful cruise too! My boyfriend and I are planning one for July.....I will be done with my meds July1st...Yahoooooo.

Keep the UND going my friend and happy seas!

Matt Chris · Guru

Hey all

Just Received my latest Lab results for he end of week 10, all is still clear / UN-detented

had a bump in the road last week with my Billirubin spiking at around 4.8, had to go in for another blood draw mid week to check if it was under control because I will be leaving on Vacation for 10 days and Abbott and my Doc. wanted to be sure that it was not going to be a problem. The nurse called today with good news, it had come down to 3.5 and everything is go for travel to Denmark and Cruise for Norway fjords for 10 days ( Yes!)

Also I am on my last week of the Turquoise II Trial (12 weeks) of the Quad drugs from Abbott / Abbvie Labs So far so good , I will spend my first week off the Meds on a Giant floating Vessel so I hope it go's well.

Have cruised before and it did not bother me but who knows.

Going to be strange not taking the Peach, brown and blue Meds twice a day, I had never taken any prescription drugs for any length of time before as I am on no other Meds.

Looking forward to not having any Riba Rage and more, and more energy for life's other great pursuits.

Thanks to all for the encouragement on the way, and to all the rest of our brother and sisters on the various Trials and those on SOC I wish the best possible outcome for each of you. "Keep the Vision"

Matt

balagan51 · Veteran Member

Congrats Matt!!!!!!!

Enjoy your cruise! What a great spot to celebrate E.O.T

-- Edited by balagan51 on Tuesday 30th of April 2013 01:25:02 PM

Karen · Senior Member

Delighted...DElighted...deLIGHTed! Oh my am I DELIGHTED for YOU!

Thanks for sharing the OUTSTANDING news!

My faith is what has gotten me to this point-as well as the support of this forum and friends. The one thing I have learned over the last couple of years-life should be effortless and not a struggle. That if you sit back and wait the answers will reveal themselves. My strong, stubborn, hard-headed self has always blinded me from the truth...making things difficult..pushing my will, not in-line with the purpose of my life. Today I sit quietly and wait the direction has never been clearer...life has never been as grand. I am prepared to take what is handed to me and turn it in to a blessing.

-- Edited by Karen on Wednesday 17th of April 2013 09:01:04 PM

-- Edited by Karen on Wednesday 17th of April 2013 09:07:32 PM

Matt Chris · Guru

Hey all , for whom this may delight.

Recieved week 7-8 Lab results today for Abbot Labs Turquoise II Trial study, had to call in for them this time.

The first result that the nurse always gives is current HCV RNA (viral load) = not detected

Yes UND, the words we members long to hear, see, smell

The other important labs

Ast - 23

Alt - 26

Hemo - 11.5

billirubin - 2.7

platelets - 86 ( my platelets seem to wander all over the place, high, low whatever)

Observations - the time in between lab results is a interesting study in faith.

the definition of faith via the Holy scriptures is from Hebrews chapter eleven verse one is

Faith is the assured expectation of things hoped for, the evident demonstration of realities though not beheld Excerpt From:New World Translation

Trying to keep in expectation of positive results is not the hard part. The harder part is the assured portion that we have to do battle with, or lack of a better word (the what if's)

It's the "your doing great and are going to make it", versus "the not everyone achieves SVR and something could go wrong" and the battle that ensues in our minds and hearts until your next lab result reassures your soul.

The questions is how should we deal with it?

I personally read the other Trial study results , especially the graphic charts which shows the last groups results. This gives me the positive reassurance that sometimes I need to get it off my mind.

Another great aid is this Forum and the friends that build you up with positive reinforcement. A third way is to keep busy in all things, work, home and spiritual things, prayer can be a great way the release all your worries and anxieties.

So the question is how do you deal with this issue?

Matt

-- Edited by Matt Chris on Thursday 18th of April 2013 03:37:02 AM

mallani · Guru

Hi Matt,

Very happy you got your Undetected at last. It's a great feeling. Long may they continue. Cheers.

Millercollaborative · Member

Hi Matt, its a beautiful word for sure! I felt the same way and cried too. I am keeping my fingers crossed for the long term. You asked about labs. I think I could get the results if I asked, but I haven't - except for the 21st day results which I asked for and got hard copies of, so that I could take them out and read over and over (just the virological report and the liver enzyme one). Mostly, the clinical manager just says, all labs are great and everything is good. I did have my six month MRI last week though, and got all the standard labs done, so I have those numbers.

Freshhope · Member

Hey Matt,

That is absolutely awesome news! I had tears in my own eyes, partly out of joy for you and partly because I'm a month behind you (going for week 3-4 labs on Friday) and the idea of finally going undetectable still seems to good to be true. It also gives me hope that even though we may hover at the <25 for awhile, that we can get through. I know there's still a waiting period ahead, but you've given me a lot of hope today. We serve an awesome God.

Alan

Karen · Senior Member

Hallelujah! Matt...such wonderful news! Feeling your joy...

LUV2RYDE · Senior Member

Awhhh Matt I am so happy for you.....brought a HUGE smile to my fave.

smile smile smile smile smile smile smile smile smile smile smile Wishing the very best for you!

balagan51 · Veteran Member

That's great news Matt Enjoy it man. We are on the way brother. After hearing " there's nothing else we can do you" for years after failing treatment.... Getting that phone call /....I'm so stoked for you and completely understand what you are feeling. Just have to remember, " just for the day...." Today we are virus free ......

Matt Chris · Guru

One word I heard this morning at 11:52 April 1 moved me to Tears of Joy

" Undetected "

I just received a phone call from my Abbott Truquoise II Trial Study Nurse contact with my week 5-6 Lab results when she said those coveted words.

I was traveling with my wife of 33 years and we stopped at one of those super gas / quick mart and departed to the restrooms. Immediately following the phone call I found my wife by the coffee dispensers and tried to tell her the news but my voice and emotions overtook me and I broke-down and mumbled that I received some important news then I said bearly understandable "I'm undetectable" she said "what's wrong what's wrong did someone die" then I said crying "no! no! someone lived! someone lived! " she said "what?" I said I received my VL report it said undetectable then we embraced. ( sorry for the drama, but this is a life changing moment for me had to write down)

This test result is yet but another hurdle that all of us Hep C brothers and sisters hope to reach. My my case I figure its my 6th major hurdle, with the 1st being getting over the initial shock of having HCV and so on ...

I realized that this is a important milestone to reach, but I have to have many more months of successive Lab results that read "undetected" before I can fully feel secure about the prospect of SVR. But for today its time to feel good about it.

Its amazing that a couple of teaspoons of blood plasma can be used to get a reliable viral reading out of 10 pints of blood that flow in the human body. But I guess we should not be surprised because these are the same type of scientists that have invented theses new all oral Meds that can reduce (in my case) viral loads from over 6,000,000 to under 200 in only one weeks time. In my clinical study which is for only cirrhotic patients its even more impressive.

Thanks to all of members of the forum for your loving and fulfilling encouragement, and I thanks the most high God, who's name is "Jehovah"

Matt

Karen · Senior Member

Good morning Matt,

I cannot tell you how much I appreciated reading your post this morning. These are the same struggles I am having going into a trial (being treated as a lab result-forgetting there is a breathing-living person in here)...

Keep your concerns and thoughts coming....we need to hear the truth...no sugar coating.

As you wrote to me...be a strong advocate for yourself. Follow that and you will be alright.

Keep those good results coming...Karen

LUV2RYDE · Senior Member

Matt,

Like Jill said you are headed in the right direction...and soon will be on your road to UND then SVR smile smile smile .

I have five more days till I find out if I am on the placebo or real thing. It will be a load off my shoulders for sure. I am happy for ya and look forward to more news!

Cinnamon Girl · Guru

Hi Matt, thanks for sharing your thoughts, as always. Yes, you are `lab rats` primarily, of course, and it must have been a harsh reality check for you to hear your doctor remind you of that fact. That`s why we should be so grateful to all of you who are participating in these clinical trials, you are are paving the way for others to follow.. But at the same time, each individual one of you is also hoping above all else to be rid of the virus and a trial often presents a very good opportunity to do this when there is no better option available. I guess like a lot of things, it`s a matter of perspective.

Good to hear your sx are getting easier for you now and your body is adapting. I`m hoping for the best results for you, let us know when you hear back.

All the best, and a happy Easter to you! smile

Matt Chris · Guru

Thanks for the encouragement Jill and Malcolm

Still waiting for my week 5-6 lab reports, Seems that the lab data from the blood draws never are consistent in there days it takes to send out the reports.

intuitively speaking its feels like my body is adapting / getting used to the Meds because I'm not noticing as much Ribavirin drag as I did in the first couple of weeks.

Because my last two VL were <25, I've learned that its means that my viral load was so little it was hard to quantify, but still is detecting the RNA of some loose HCV.

Because of being cirrhotic how the Meds are assimilated by the damaged part of the liver and inturn the rest of the body are not totally understood, which may cause a longer treatment time to reach the damaged parts.

I talked to my Doctor about this topic (Pharmacokinetics) he then blatantly said that was the purpose of this study. (to figure this very thing out) it really took me aback to reality. Then he basically said he knows very little about PK (Pharmacokinetics) and that PK was not his specialty.

Sometimes we get so focused on ourselves because of our own desperate state to be cared for that we forget the hard cold facts that though big Pharma wants the best possible outcome for all there participants, that's not its main concern. They are mostly interested in the data that comes out of the study to make adjustments in dosing and duration.

The mistake they are making is treating the participating patients as only a lab result instead of a person. I suppose they are hoping that the local doctor would be caring for those needs, but as we know these Docs are not always connected to these patients in the normal way.

I realize that the new guided therapy that is being adopted by MD's GI's and Hepatologists is the future that I wished was included in these study trials, I guess I need to be reminded that I'm trading this care for a normally very expense treatment givin at no cost to the trial participants.

Sometimes the best therapy is to write out our concerns and thoughts, just to get them off our mind... aaahhh

Matt

-- Edited by Matt Chris on Saturday 30th of March 2013 05:24:20 AM

-- Edited by Matt Chris on Saturday 30th of March 2013 05:26:20 AM

-- Edited by Matt Chris on Saturday 30th of March 2013 05:31:16 AM

-- Edited by Matt Chris on Saturday 30th of March 2013 05:33:27 AM

-- Edited by Matt Chris on Saturday 30th of March 2013 05:41:59 AM

mallani · Guru

Matt,

The 4 week VL is excellent. As I said in another post, cirrhotics may take longer to respond. I'm sure you'll be fine, particularly with your great LFT's. Cheers.

Cinnamon Girl · Guru

Hi Matt, yes I can understand you being rather disappointed with your vl result, but your liver enzyme levels are looking good for 4 weeks into the trial.

Undiscovered country indeed, and we`re very interested in reading updates and progress from all of you who are currently taking part in clinical trials.

Keep going, the drugs are working and you`re headed in the right direction. ~ Jill

Matt Chris · Guru

Week four Lab Reports for Turquoise II Trial

Finalily received labs today , I am still showing HCV detection at VL < 25

But many other labs are at all time lows ALT 31, AST 26. Also Platelets up to 105 which are still low but much better that in years. My Hemo is down to 11.2 and the WBC is a bit low

I must admit I am little disappointed I did'nt achieve UND in four weeks, but all other areas are improving so I have to keep the vision and improve in my exercise and sleep patterns.

Because there is not a lot of history or data on these new trial drugs, we are in undiscovered country in regards to how they work with cirrhotic patients with respects to the time and way it takes to achieve UND

So far I am very pleased with the outcome and my liver is to.

Matt

-- Edited by Matt Chris on Saturday 16th of March 2013 03:10:50 AM

Matt Chris · Guru

End of week four partial report

I visited the study cordinator today to draw blood and replenish next four weeks of Meds

I have not received test results yet , but can tell my Billirubin has elevated again and the Ribaivirin is started to fatigue my soul.

I can't help but feel real good about my previous low VL score (<25) at week two and that four weeks in it should be even lower or non detectable.

Keeping the vision for my body

Matt

Biggyb · Guru

If you miss a dose of Incivek and you remember within 4 hours of when you usually take it, take the missed dose with food as soon as possible and go back to your regular dosing schedule. If you miss a dose of Incivek and it is more than 4 hours after the time you usually take it, skip the missed dose and go back to your regular dosing schedule. Do not take 2 doses at once.

Read more at http://www.drugs.com/cdi/incivek.html#izIbAiRsr9uvp3FO.99

deenie · Newbie

Many thanks,

Deenie

Matt Chris · Guru

Deenie

Use the search engine and ask "missed dose"

Matt

deenie · Newbie

Hello, I need help please. I missed my 3:00 incived dose. My next one is at 11 or 12:00. What should I do.

balagan51 · Veteran Member

Joey V

I just recieved my 4 week labs today.

Good news is everything was WNL

I was hoping for UD but my viral load was still <25 just like my 2 week, same as yours

The clinical coordinator explained as your doc did to you, that while it was <25, they still found copies in the blood

but not enough to quantify.

I am on week 5, so hopefully by next week we will hit the UD!

I know that clinically the labs are fine , but I am having some exercise intolerence. Its probably Ribo related as my CBC was WNL.

When I think about it, I have never had my enzymes WNL, my platlets are up to 125, for the first time in years I can find my car keys in the morning, and for the most part, I feel better.

My friends are all commenting that I even look good!

(they are good liars wink

)

I have a lot to be thankful for!

Wishing you, me, and everyone else the best!

Mike

Hep C Discussion Forum

~Bob~

~Bob~

~Bob~

Legal Disclaimer: