Hey Jim...great to hear from you...

I think because of the fatigue I just hit a wall-Really tired of the whole Hep C thing.  As mentioned earlier, I was so "unaware" how much it has played a major role in my life for so long and "I have just had enough"... This week I just wanted to throw the drugs to the curb...sick of being sick!   To tired to go out, suppose to start a new job but my brain is to foggy.  Because I do not have family to lean on and I am unable to burden my friends with only so much...(God knows they try to understand and be here)...It just added to the pity party.. Just feeling sorry for myself...

Ok...back on track I go...So glad for the support of this forum.

You`re not on your own, Karen, we`re here and you can lean on us any time you need to.  That`s why people join forums like this!  Going through tx isn`t easy for anyone, it`s a step into unknown territory, and that`s especially so on a clinical trial. 

Try to take it easy and go with the flow.  Get as much rest as you can, you can do this.  xx

Hopefully things will calm down in a week or two as your body gets used to the drugs.  Remember, a nap goes a long way in solving the problems of the world.  :)

Thanks Zlikster and Lisa..

I think not getting adequate rest (or feeling like) plays a big part in how crappy I feel.  Just got to keep the focus on "undetected"....and push on through...

Thanks again for the encouraging words.

Hi Karen, I read some people on the new DDAs do have some side effects and everyone will react differently. Keep going, I don't think everyone will ever be sx free, but at least it is free from the flu symtoms. I hope you have a better weekend ahead. x

Hi Karen

well i guess there must be some sx from dual DAA intake, but it can't be that severe as with interferon (well and riba), so just think it could be MUCH worse ;-D

do you have full blood test results  (beside VL and liver enzymes)? Maybe Hgb is on it's way down so you don't get enough oxygen?

Not sure do these new DAAs cross bloodbrain barrier so they can cause some chemical imbalance in brain?

anyways, hope next call from nurse will be "You viral load is undetectable"

Week three is behind-on the road to week four.  No word from the study nurse concerning viral loads from last week so no news there....not sure if that is a good thing or bad.

I know I have no room to complain but I have had a very difficult week.  My brain is a little goofy...which some would say is normal... I sleep but feel really tired when I wake, my stomach feels like crap and my muscles are wasting away-weak... This in spite of the fact I have continued my yoga practice, light weight lifting, and walking.   I find even going to the grocery store is a task....What the heck is going on here. 

Thanks for coming to my pity party.  Apologies for those who have it much worse seriously.  

Congratualtions Karen, that was a huge viral jump. It is good to know about the fat issue. Not that it applies to me, but I'll certainly be more careful regarding food groups. I don't like much fat but I do like sugar which is just as bad. I can't wait for this drug to come on the market. i'll jump on it!

Good morning everyone...Thanks so much for the support...means the world to me.

Also for clearing up the fat story....Yep! my study nurse told me that if you have a BMI over 30 you would not qualify for the study because the virus hides out in our fat cells...harder to treat.

 So happy that we have people on this forum that know their stuff...

Go Karen!


re fatty liver, prior to hcv diagnosis i was a skinny guy (not a fan of fatty food). I've consumed alcohol and pot (but moderatly). 3 years ago on ultrasound exam they said i had a lightly fatty liver (and that was only doc that asked me about hepatitis??? prior to having ALT high for 6 years!). When i did pcr/genotypisation last year, only preindication i might be a bit luckier with genotype was that piece of information. And i was right. Genotype 3 indeed it was. My mom on other hand had a fatty liver, but cause of weight (not alcohol or hcv related).

@BiggyB, indeed seems so! Now that i am ultra skinny (i guess i shouldn't have started with diet before tx, my mistake) i doubt there are excesive fatty cells in body left for hcv leftovers to hide they replicate only in hepatocytes anyways?

can't wait to get on next ultrasound to see whatsup with fatty liver cells...

peace

Hi Karen,

Great to see the Viral Load drop so fast and Your liver enzymes are impressive. That must be very reassuring.

Sorry to be picky, but the HCV does not live or replicate in fat cells. Fat cells are adipocytes in connective tissue. In patients with a fatty liver, adipocytes collect in the liver connective tissue, and fat accumulates in hepatocytes . These fatty hepatocytes are more likely to be attacked by the HCV.  Fatty liver is more common in Geno 3, but can be found in alcoholics, diabetics and obese people. So, if you are fat, you are more likely to have a fatty liver. Cheers, keep up the good work.

Karen

All I can say is I feel ya

another dragon is down and you can finish him off

and now I need to loose some fat LOL

Bill S

Now you got me going........lol....thanks pal!

Sitting at the kitchen table wiping my eyes feeling tremendous gratitude for how things have gone for me. And all of us.

It is an overwhelming feeling to be able to imagine living hep c free for the rest of our lives. A true gift not many have received....yet. Many of us will feel this sooner than later, I hope and pray.

A big shout out to the tireless and sometimes unrecognized work of the researchers, the chemists, and the medical community for all they have done to help us live free of this virus.

Who has it better than us?

Can't wait till next week so we can hear those words we all live for.  Keep going Karen.....

Week two of 24 weeks.  My drive home from my weekly study-nurse visit was a little soggy, not from the rain but from tears of joy, rolling down my cheeks.  The nurse stated that she misspoke last week and that my labs were not blinded.  She shared with me that my baseline viral load was 16.2 mil and after "one" week of treatment, the viral load is now 293-ALT 27 / AST 30.  I was so overcome with emotion.  This took me by surprise-I guess I never realized the fatalistic thoughts I originally had about living the rest of my life with Hep C.  With this news, my mind raced all the way home with excitement.  God willing, in a few short weeks I will be given the start of a completely new life and hopefully a much longer life, free of Hep C...the opportunity to be the person I always dreamed of being.  To be loving and appreciative for all that surrounds me.  To make clear and wise choices that are good for the whole.  This is a glorious day!  My life has been full of lessons but this one has been my greatest teacher...

On a lighter note, I also learned something new today.  Not sure why I did not know this...but the virus lives in our fat cells...yep, fat cells.  People with less fat clear the virus quicker-Thought this was a great motivator to stay slim and trim.

I have noticed heavier people handle treatment better and don't drop out as much as thinner ones,,,so everything kinda equals out. Although i am getting kinda thin, i am glad i had some extra weight on when i started this awful treatment.

Now you got me going "again"....

Thanks Jim for all your support and helping me get to this point...You were certainly a role model!

Hey karen

All things in moderation, including salt.

There are great healthy choices for salt, remember one blood test does not make the woman or man.

If it keeps on showing up as out of range then you need to address it with a plan of action.

Keeping your vision to the end

Matt

Thank you so much for your suggestion and well wishes.  I did make popcorn "w/salt" tonight....thought the same thing.:)   Plan is to change my eating habits based on lab reports...Fun to try new things...and keep my mind focused straight ahead.

Karen, I'm sure there are a million reasons NOT to do this the medical people here can describe in detail, but increasing your salt will decrease your potassium (and the other way around).

My fingers (and such) are so crossed for you on this trial. :)

Thank you very much...I hope that the blood pressure/potassium concerns do not cause me to get booted out...

Karen congrats on the trial. I keep a journal for my SX and how I feel and if anything strange happened.

Just received a call from the study nurse (heart dropped when I saw the caller ID),  looks like my potassium levels are up.  I know this can happen with a bad blood draw-she felt that was not the cause.   Maybe my vegetarian lifestyle??? Kale, avacodo, white beans, yogurt, mushrooms...all high in potassium.  Meat may be on the menu soon...oh my.

Anyone else have high potassium levels - low blood pressure?  

Really tired today...flat on my back.

Hey Matt...Lo....ve!.. that picture!  

Figure I will treat my labs like a pregnancy - will know the results in 6 months..shorter than 9....LOL!

Hey Karen

Very interesting stuff, I would think that part of the side effects during the first two weeks will be frequent urination (it was for us on the Abbott DAA's also).

Actually I think stepping up our intake of good quality filtered water during the first month is important, remembering that you are expunging millions of old HCV.

So go with it, and enjoy the thought of cleansing your body and mind of them. 

I also think you are hitting on a truth about HCV and brain fog, vision and being spacy during the first part of treatment before your body compensates.

In my opinion this shows that you are responding to the Meds in a positive way before your body starts building up immunity against them and they are doing there job.

I have also determined my my case that if you eat crappy foods (Pizza & junk foods) that its effects the next days energy levels, mood swings and overall well being. I think this has to do with the Ribavirin powerful long lasting effects in combination the other other Meds.   Karen you will likely not have this amplified effect as much as we do in the Abbott study, but as you are already aware 'You are what you eat" and for 24 hours later with immediate consequences.

Shame they are not going to tell you much about your progress, that,s part of the fun or stress (Ha) You can always do your own tests at a "Any Lab Test Now" location for cheap.

Anyway keep on telling us your weekly / daily changes.

Completed my first week of treatment, 23 weeks to go.  Went for my weekly blood draw, EKG and vitals, blood pressure, heart rate and temp where low (80/60- 55heart rate- temp 95.76).  No concern regarding treatment but the study nurse is worried about me passing out.  I shared with her that I feel like I am on a diuretic (frequent urination, no sponginess in my tissue, etc.).  On my way home I gave this some thought, it occurred to me that people with high blood pressure take water pills to lower blood pressure-hmmmmm! Interesting!  Maybe I need to start adding more salt to my diet..

I asked when I would be hearing about my lab results, the study nurse stated that in this trial the labs are blinded and the only way we will hear anything is if I need to be pulled off...Ok now-so no contact from the nurse will be considered a great thing!

Side effects-I actually have a positive...I never realized how foggy my brain had become. My mind is much clearer-except within the first 3-4hrs after taking the meds. I actually feel a little spacy-poor eyesight.  Nausea is the major complaint (minor really), except when it traveled up to my left shoulder, darn gas-I found cutting my food consumption before 6pm and not having anything tight around my waist seems to help.  Having a piece of ginger before settling for the evening has also proved to be  beneficial.

if you see a package of GS7977+GS5885 pills unattended somewhere, well...u know what to do! ;-D j/k, keeps us posted how it goes!

Hey Ms. Loopy Lisa-thanks very much for the congrats!  Hope this defines the future for all of us... 

Hey Jim...thanks for being the pioneer in the Gilead trial-it is your fortitude and treatment log that made this a much easier discision.  However, next time please warn me ahead of time about the ice cream...I am well behaving today:)

Very nice Karen, glad your not on the riba. This is the wave of the future. Easy on the ice cream girl.........lol....

Congratulations Karen, I am so jealous, yet so happy for you. :D

I don't like the sound of the that Joanneh, was that pre-menapausal?

Hi JoAnne,

How are you doing?

Thanks as well for the needed push...K

Hi Karen,

That's too easy!  ONE pill a day instead of 18- wow.  No injections as well- weren't you clever to wait. The drugs are probably more effective too. Lucky girl- Cheers.

Good morning everyone...

I want to thank everyone for providing the inspiration that I needed to get here...I could not have done this or should I say...I would not have done this without "all" of you.  Thanks again!

After viewing the most recent labs, I am convinced that this was the right time to treat.  The jump in my VL and Fibroscan in one year was significant (VL 3m to 11.4m - Fibro F0-F1 to F1-F2).  I had not had any change worth noting since 2006-the virus was on a run this last year!

Not to do list:

WARNING: DO NOT OVER EAT!  This is the new warning label I am putting on my bottle of meds, I really hurt myself yesterday OMG!...LOL!  I usually eat a large breakfast-snack mid-day and have a light, early dinner.  Yesterday, friends stopped by and took me out for very yummy meals that I could not resist gorging myself on...than I topped the evening off with something I never do....Ice cream and chocolate topping-I thought my life had ended...silly me!  

Hi Matt, Thanks for the pep talk, I needed that.  Yes, only one pretty pill at 11am each day.  I will be getting lab results - will share as soon as I know.  

Hi Malcolm,  Thanks for all your support in getting me here.  As you know so well (listened as I cried), I was booted out of last years trial-maybe this is redemption.  I just pray that this is more than luck and that the end result is as wonderful as the ease of medicating.  

Hi Jill,  Thanks as well for all your help and understanding..I did not get to this point without a lot of kicking and screaming.  And yes...I did go in disguise-I had a big smile on my face...

-- Edited by Karen on Wednesday 17th of April 2013 01:24:37 PM

-- Edited by Karen on Wednesday 17th of April 2013 01:27:25 PM

-- Edited by Karen on Wednesday 17th of April 2013 01:33:41 PM

-- Edited by Karen on Wednesday 17th of April 2013 03:11:04 PM

Hey Karen 

Congrats on your first day. One peach pill it's quite amazing , only one pill Per day?

We now are officially jealous, on my Abbott Trial it's two peach pills one brown and three Ribarvirin and that's just in the morning.

Well I think you hit a strait a way in your journey so enjoy the ride.

Will the study give you labs results and progress reports?

Hope the best for you.

Matt

And no riba side effects either!  You`ve struck lucky on this one, Karen, well done! 

I presume you went in disguise?!    Keep us posted, we`re with you all the way! 

Good luck Karen! wow, no Riba, that means no sx at all? keep us posted!

Went to the plastic surgeon's office this morning for my baseline trial visit (just think this is so funny-so secretive)-I was assigned to Group 1 = Sofosbuvir/GS-5885 NO Ribavirin for 6 months.  

Popped the pretty peach pill at 11:00am...here we go!

Hi Zlikster...Thanks for the well wishes.  I was sure happy to hear no Riba.  My prayer this morning on my drive in...Out of 4 groups-put me in the least difficult with the best results.  The first part was answered.

-- Edited by Karen on Tuesday 16th of April 2013 07:33:06 PM

Hi Karen:

You are very lucky to get into this trial. There is no Gilead trial in Texas yet, but they offered me simeprevir and something else I forgot. I am waiting for Gilead as well.

I wish you all the luck.

Karen

Fantastic, Super Fantastic, a emotional high point

That is great news, and is music to your ears and all of us that are pulling for you.

The first two weeks are very important as these Meds will make the replication of HCV nearly impossible.

Get your Mind ready to tell your body to let the Meds do there thing.  (The power of Intention)

Stay well hydrated and of course eat the healthiest food you can find, you know the way.

You will be expunging millions of old HCV so your body will adjust, sometimes with or without a little pain. (headaches & so on)

If I had my first two weeks to do again I would take as much time of work as I could and get my" Blood in motion and mind on focus". ( hey that rhymes)

Before you know it four weeks will pass and you will be UND

Matt 

Great news, Karen!!  This sounds like a really good trial to be on.  Wishing you all the best of luck on your journey, keep us posted!  And hold on to that great attitude and sense of fun... 

I`ll make this thread a `sticky`

I'm hearing the intro for Nightline.......da, da, da, da,........."Day #1 in Karen's journey away from hep c."

Good luck friend.

Keep us on the loop.

wow that was fast Karen good luck with treatment, i somehow feel u can be good as new and hcv free in 3months time from tomorrow thats GS7977+GS5885+Riba sounds like a winner!

best

Good luck, this is great news! I would jump on that treatment having heard what others go through with interferon.

:D

Da da da da (drum roll)...Just received an email from my study nurse-all labs are back....Treatment starts 10:30 tomorrow...Not sure what I am feeling...trying not to think about it!

Thank you all SO...MUCH for just being you-Outstanding!

I really needed all of you today.  My life is some what complicated but lots of great friends...Your push and encouragement is needed/invited to help me to stay on track.

Thanks again-EVERYONE!

-- Edited by Karen on Monday 15th of April 2013 07:45:53 PM

Hi Malcolm..Thanks for the good wishes.  

Waiting for the test results-trying to get mentally prepared.  So grateful to have people like yourself as shining examples of what is possible....you are the heroes.