Boceprevir I love you, I am getting pretty close

[spectda]

I started the trial with a four week lead in of soc, geno 1a f 2.5, grade 3,

Day 1 VL:  2,650,000
Week 2 VL 236,000
Week 4 VL 69,800
week 6 (after 2 weeks of starting boceprevir)
VL 246

[spectda]

I also wanted to mention that ultimately I was very lucky to get into this trial regardless of the outcome. My blood work just barely passed the HGB requirement after the second screening.  

I don't take it for granted and remember how lucky I am all the time. I also often think about the kind and supportive people here that need these drugs and especially the people with more advanced disease like Magnum, Hector, trinity and many others who take the time to congratulate us, advise us, and support us.

[spectda]

it's funny that you can't say s**ks

[spectda]

Hi Cindy-
Yes I got mouth sores, they come and go. I never had them before tx and they are not uncommon during tx.

It's not always necessary to get a biospy before treatment, but the stage of the disease can effect treatment and all the hepatologists I have seen wanted me to biospy every 3-5 years. I have had three biopsies over twelve years since I was diagnosed. I have had hep c for thirty years. If the patient hasn't had hep c very long, and also depending on your genotype, sometimes the doctor doesn't see believe a biopsy is necessary. Knowing the stage of the disease you have and genotype will tell you if you can wait for better drugs or not.
I got in the trial by looking often at clinicaltrials.gov until I found one I thought was best for me that I met the requirements for. I contacted the drug company from the info, and they put me in touch with the trial nurse. I drive four hours each way every two weeks to the trial site, although I live only a half hour away from San Francisco. More often then not, but not always a trial wants treatment naive (never treated before) subjects.

Thank you for the encouraging words. My numbers look good right now, but I know that there is no guarantee that you will become undetectable until it happens. Some people stay just above und and never get there. i am feeling positive, but we'll see how it goes.

There is no doubt that the drugs are toxic, including the new drugs. If I only had the disease for a few years and no damage I would wait for 5-6 years when the success rates will be even higher then boceprevir and telaprevir and they may have combinations of drugs that do not include interferon and riba. At best, treatment *****. My wife asks me how I feel. I keep saying at best it ***** and at worst it really ***** so let's not talk about it.

We are all chronic after we have detectable HCV RNA after 6 months.

I wish the best for you and hope you find the right doc and get the best treatment and eventually SVR. i find that dealing with the doctors is often a balancing act of advocating for yourself and not alienating them.

I am really lucky with my trial people. They have treated me very well and are very human.

Take care - dave

[kunkielove]

Hi Diane, so I'm not alone there...small sacrifice, right?  How are you doing with your treatment, the last post i remember in response from you was that you looked forward to
'shot day".  How  are you feeling?   I hope you're doing well.  Ever since the Dr. won't refer me yet (I think Ii'm gonna ask my psychiatrist to and see if he will), at least not for 3 months, I've come to this forum on and off but never had anything to post untill I saw how welll dave is doing.....what wonderful news.  when you have some time, let me know of your progress.  enjoy the rest of your weekend. :) Cindy

[Diane12855]

I had to cut back to one cup of coffee a day about 2 months before I started tx. It made me nauseas too... and made my head feel funny. Now I often can't even finish the one cup.

Diane

[kunkielove]

Are you serious?  I'm slow to get jokes :)  This isn't funny though, did your treatment make you get mouth sores?  And is it always mandatory/necessry b/4 treatment to get a liver biopsy?  I imaagine I'll have to go for additonal bloodwork.  My genotype is 2b, that's why I'm so amazed at your #s being that yours was type 1.  An absolute miracle and how lucky you were to get on the trial.  we don't have hepatologists where I live although I could look in surrounding areas as i do/ will have a ride (no car).  i'd rather see a hepatologist than a GI dr.
And, true for the biopsy you must stay awake (nno sedation) as you have to hold your breath.
correct?   The interferon/riblavin is toxic, isn't it?  It's just so horrible of this dr. to prove I'm a reliable pt and make me make 3 unnecessary trips to his office over a 3 month period to refer me to a GI.  Unf.....believable.  The more I think about it though, 5 yrs ago I got a tattoo from an amateur artist who did them out of his home.  (I did share that I used a syringe once...swear..once that same year) but recently learned that this guys girlfriend who never touched any sort of drugs also has hep c.  I don't think he sterilized his equipment properly, I think i got it from the tatool. What does it matter though, I just can't wait to start treatment,this waiting game is making my anxiety level rise and then i start thinking...screw this, I'm not putting myself thru this, but then I think, I wanna be happy again, I want to live a good life, I'm not getting younger and I imagine what liver cancer, etc would be like.  I'll take the treatment any day over worrying and suffering through whatever may come my way if I dont ...but really, you did get mouth sores.  They must have ben so painful.  you should be clear in no time.
Youo think it'll take a while to get this new drug approved by the FDA?  It sounds like it would be so much easier than, for instance suffering thru maybe a year or more of normal tmt.
Thanksk for the info on the water.  
DIANE;  thank you also for the info.  It helped alot!!  Can either of you please answer this: every a.m. when I wake up and have a coffee and sometmes 2 cups I get soooo sick.  Sometimes I get so nauseous I have to throw up.  I'm at the point where the hep is chronic,, did either/one of you have symptoms like this or alot of fatigue prior to treatment?  Thanks again for always "being there"  God bless and enjoy the rest of the weekend.  i keep thinking it's Sunday....hello (is there anybody in there????)

[Diane12855]

I asked my doctor if it had to be just water or any fluid, and I was told any fluid, including fluids in foods like melons, etc. The reason being: When we eat or drink something, it goes into the digestive tract... the stomach does its churning thing where everything is mixed together, and then everything is pushed into the small intestine where it is mixed with digestive juices from the pancreas and bile from the liver. Then as it moves into the small intestine, the first thing absorbed is the water... not all of it obviously, or things would get too hard to move, but when it goes through the walls of the small intestine, it is pure H2O. Nothing else gets into the blood stream until the enzymes and all that good stuff has their chance to break everything down into their molecular components so our body can use it.

I know I left out a step or two, but that is basically why as I understand it.

Diane

[spectda]

Thanks for the kind words. try the white rice vinegar! LOL It really helped my mouth sores. I never drank it, just gargled with it.

I think it is important to drink a lot of water rather then other liquids or in addition to them. Water's detoxifying properties are well known. I am certainly not an expert though.

Hopefully in the next few of years the sucess rates from new combos of drugs will go way up, and they will stop using interferon and riba. This stuff is seriously toxic!

I think it's our responsibility to help our friends who have very seriously advanced disease by calling whoever they ask us to call in the fda or drug companies. We could be the ones who are in the same situation soon also.

Be Well - Dave
Be Well - Dave

[kunkielove]

TO DAVE: Hopefully you won't have long to go...i can't believe how much your viral load decrease in 2 weeks!!!  I'm sorry you're not feeling well.  hopefully the way you feel will soon improve.  you've been a great contributor to this forum and so fortunate to be a member of the trial you're on.  Hopefully by the time I'm referred for tx (around Dec probably)  the FDA will have approved the drug.  Best of luck to you in the weeks ahead.  I can't wait to hear your new bloowork results!!  I'll keep you in my prayers and my fingers crosse for  you.  BTW: I'm not a big drinker, A glass of Kool aid could last me hours.  I understand that under tmt we must drink a specifie amt of water.  Does it have to be straight water or could it be ice tea, some kind of drink that you make with water.  Well, if it lessens the side effects, I''ll have to do it. (it can't be much worse than drinking white vinegar (doesn't work) years ago before I had to see my probation officer who never did test me...YUK!!!!)
TO BILL:  I cried when i read your post with the lyrics to that song...a song from my youth also...those were the days!!  Hope all is well with you....you both have a good weekend and God bless you both...God bless all of us here!!!

[GSDgirl]

Way to go!!  It looks like you will have a great outcome!!

Denise

[Diane12855]

AMEN !!!!!!!!!!

Actually, I think the good part of the memories was more the many friends that I used to party with as a teenager. All those close relationships disappear after marriage an motherhood comes along.

[RobertBeWell]

"Memories.... they seemed to be good memories, yet Dave is right, they got us here."

Yah, I honestly wish I had never seen "recreational" drugs as a young teen, but, what can you do. Can't change the past, only the future. If I had it to do over, I'd stay as far away from drugs as I possibly could. In retrospect, I can't see a single good thing I derived from their use.

Thank God I had the sense to stop some 20 odd years ago.

[RobertBeWell]

Only a hepper could love a chemical compound :-)

Grats spec, we're rooting for you man!

[Bill1954]

Hi Diane,

I was just south of San Francisco back in those days… and yeah, the song is pretty cool. I’ll post the rest of the lyrics here, and hope that Dave doesn’t mind the distraction of this off-topic nonsense:

Once upon a time, there was a tavern
Where we used to raise a glass or two.
Remember how we laughed away the hours,
Think of all the great things we would do?

Chorus:
Those were the days, my friend!
We thought they'd never end.
We'd sing and dance forever and a day.
We'd live the life we'd choose.
We'd fight and never lose.
For we were young and sure to have our way!
Di di di di…

Then, the busy years went rushing by us.
We lost our starry notions on the way.
If, by chance, I'd see you in the tavern,
We'd smile at one another and we'd say,

Those were the days, my friend!
We thought they'd never end.
We'd sing and dance forever and a day.
We'd live the life we'd choose.
We'd fight and never lose.
Those were the days, oh yes those were the days!
Di di di di…

Just tonight, I stood before the tavern.
Nothing seemed the way it used to be.
In the glass, I saw a strange reflection.
Was that lonely woman really me?

Those were the days, my friend
We thought they'd never end
We'd sing and dance forever and a day
We'd live the life we'd choose
We'd fight and never lose
Those were the days, oh yes those were the days!
Di di di di…

Through the door, there came familiar laughter.
I saw your face and heard you call my name.
Oh my friend, we're older but no wiser,
For in our hearts, the dreams are still the same.

Those were the days, my friend!
We thought they'd never end.
We'd sing and dance forever and a day.
We'd live the life we'd choose.
We'd fight and never lose.
Those were the days, oh yes those were the days!

[Diane12855]

Sunshine, blotter, microdot..... Did you live in Fort Worth, Tx while in high school? If not, I didn't know they named it the same way all over the country.

I loved that song too!!!

Memories.... they seemed to be good memories, yet Dave is right, they got us here.

Now I'm totally confused....

[spectda]

Thanks Elaine,

[child24angel]

THIS IS WONDERFUL NEWS DAVE !!!! CONGRATS !!!!!!

[spectda]

Hi-
I thought the same thing. Without the boceprevir I am unlikely to become und and hopefully. Monday will be the test for end of week 8 so I have not cleared yet, its appears to be looking pretty good though. That's the point of these new drugs, right?

I have never treated before. I had three biopsies over the past 12 years and the previous 2 were stage 0, grade 2.  The most recent one earlier this years was stage 2-3, grade 3. I was diagnosed with cryo and have the RH factor.

My previous hepatologist thought I would not progress with the disease and thought because of the geno 1a I should wait for better drugs some day. over the past three years I started getting bouts of purpura/vasuclitis on my legs and lower body.

I finally went to see one of the Gish team doctors earlier this year after a biospy with a local gi.  It took two years and my own research to get a good idea that I had cryo. I went to the gish team doc and encouraged him to test me for cryo and  biospy the purpura. The purpura was not always active and the doc was not able to really know for sure that I had it, although it stains the skin on your legs from the previously pooled blood.

I had an outbreak earlier this year of purpura and I was confirmed positive for cryo and vasuclitus. The doc I was seeing told me he lost a patient that was at the same stage as me for liver disease because the cryo went to his brain. He suggested I treat immediately before something serious happens. I waited anxiously and tried to get into a trial to improve my odds, and here I am.

I guess that was a lot more info then you asked for!

- Dave

[frijole]

Wow.  I am impressed.  With the stats you had in the lead in, I would not have given you a chance to clear.  Had you done SOC before?  Congrats on the UND at 8/

I just can't wait until this hits the market!

frjiole

[spectda]

Thanks, better days for all of us until we get to %100 cure.
- Dave

[spectda]

I'll never forgive you for reminding me of that song. It's been running through my head now and it's your fault! LOL

[spectda]

I am certainly thrilled but guarded until I get to und. One day at a time for all of us.
Thanks for friendship and support - Dave

[spectda]

"That is great news! It does make the sx a lot easier to take doesn't it?

That light at the end of the tunnel is getting brighter and brighter.

Diane"

it certainly does make it much easier. Best to you also, we are all hopefully headed in the right direction now. - Dave

[RCM829]

You are too funny Bill!!! I had forgotten all the different NAMES of our crazy indulgences. Thanks for the - uhm - flashback!
And  congrats spectda - better days are ahead for all those with Hep C!