confusion on clinical trials and what is next for me

[mindy]

   Hi, I am slowly starting to explore what will happen when I see my liver doc. in Feb.  Does anyone know if the Telaprevir/Vertex treatment has been approved by FDA?  Or if the Boceprevir treatment?  These are the drugs that my doc told me to follow and track, he said when these clinical trials are fda approved, then I will have to do a third round.  I live each day as a brand new day, god given, don't worry about tomorrow, but also do not know how far these particular drugs have progressed.  Thanks for letting me know if you know anything about these drugs.  mindy

[Hank's mom]

Hi Mindy -

There is some excellent information in Treatment Issues.  I am not the one to answer questions, but I think you will find some very good stuff here and the there on the boards.

I love hearing that you have found balance and sobriety. It is heartening to hear, as I know you were over your head when you first came aboard.

Stay positive,
Susie

[MissyMouse]

Mindy,

I'm also in sit and wait mode for my third round of treatment.  I was just seen at Shands at the University of Florida in July.  I was given the option of going back on treatment now and staying on until Telaprivir is approved in 2011.   They called this "supression therapy" and felt that it would work for as, unlike you, I always cleared on treatment but just couldn't stay that way.  However, I have pretty much decided that after 3 years of treatment, I need a break and probably won't start again until 2011.

So, to answer your question, nope, Telap and Bocep have not been approved yet but are expected to be approved in 2011.  I was also told by Shands that these drugs would be my cure.

Mouse

[DougV]

Mindy,

Not sure I understand, while the drugs have not been FDA approved there are clinical trials ongoing using them.  You might be able to get into a clinical trial, there are several ongoing and recruiting.  I've treated twice and I'm waiting for the new drugs to be approved but only because I react badly to the RIBA.  If however I had no issues with current treatment drugs then I'd be doing my best to get into one of the current or near future trials just to save both time and money.  Missy who answered before I would also be treating if she wasn't also excluded from the trials for other reasons.

Doug

[mindy]

Hi my friends, I too am not eligable for clinical trials because I have to take a seizure med called keppra every since July 17, 2008.  Apparently not only do I have scare tissue on the outside of my head from a fall before a coma, but also I have a small leasion? in my brain.  So for the safety of my twins and myself while driving it was suggested that I stay on the keppra.  My liver doc at Einstein Liver in PA told me the Keppra would make me inelegable for the clincial trials.  I agree with missymouse, while on tx I remain undetectible, which means our liver has a chance to heal, but then eventually the virus breaks thru.  I will probably wait until 2011 when they are fda approved.  My girls are now 5 and son 26, I will be 51 in 2011, you both have tried twice, the same as me, so lets stay in our fellowship, one day at a time, and when these txs are approved,, we will get thru it together.  And momxfive I have so much admiration for you and all the senior members for always being here.  You are an awesome woman.  Where is Earl?  Hope he is okay and Willy too.  mindy

[pete c]

 HI Mindy

   Just want to say hang in there my friend  and live life the best you can for today. Sorry to hear of the non respond, will keep you and your in my prayers . Kids doing good  ? well  again hang in there you will fine a answer when it,s time for it to be reveled to you,
I know it stinks just waiting  yet it gives us time to recover and regorup the troops so to say.

                                                                 Pete

[willy]

Where is Earl?  Hope he is okay and Willy too.  mindy

I have been around but not posting as much.  I keep deleting cookies and files which unlogs me and then I might not log back in but I'm here numerous times per day.

I have been working a lot before my season runs out and I have been suffering more fatigue; there I said it.   


My suggestion is that repeating the same tx when nothing has changed will likely yield the similar results.  The new PI's wll; likely be out in 2011.  That will make our population smaller since I think it could have about a 75% success rate for many of us.  The odds for past TX failures is also quite improved; about 50%.  IF one was a past TX responder one may have a similar success rate as niaves; about 70% if I recall.

Lots of other trials coming that look good.  I would read up on the new treatments.  I would start reading the excerpts fro AASLD and EASL if you want to know what is coming. 

This disease is curable.  The current rate across the board is about 50%  I think it could move closer to 75% with the PI's or better.  Other improvements in TX may also be of note such as other adjuncts that could improve response during the critical first 12 weeks.  The gap is narrowing every month on beating this virus, IMHO.

best,
Willy

[Hank's mom]

Hey Willy -

I'm sorry the symptoms are starting to be more noticeable to you, but it could have something to do with the way you've pushing yourself.  I, we can all understand that in this economy it is a kind of suicide to say no to a job.  It has gotten awful - the estimates here at food pantries are double last year and they had already doubled over the last couple of years.  This really sucks.  I look at people on a bus or at a restaurant and then imagine 1/2 of them represent someone without a job or coming back after retirement.

Anyway, enough of that soapbox - you do what you need to do about your health - it may be that one of the new combos works easily and well for you, or it may be that the standard 1 shot riba caps is right, but at only a short time.  If I could figure any of this out, believe me I would.

Hope you are okay with all of life's other interesting little nuggets,
Susie

[willy]

Susie, one of the biggest changes that I've seen this year is that ALL of my kids have moved back with me.  Not only do I have my 3 kids...... but I also have got my daughter's boyfriend and a son's girl friend....also a dog. 

Damn; when it rains it pours.   

That isn't really that bad.  I like that I am helping them weather the economic storm.  They are saving some money and my daughter is still planning on buying a house.

I have a youngest son that just got out of school and he and his GF have both moved back and in with me.  They both just got jobs and are broke and so I've been helping them out.  Nick just started working at a pizza joint and is making and delivering pizza.  Damn; he made about 160 last night!!!!   So they are off and running (finally)

To some extent it is saving me some money...... or it will save me some money once this gets rolling.

The bad thing though is that I am doing a lot more housework; recycling, dishes, facilitating, breaking up arguments..... and some socializing along with the housework, but it has actually cut into my billable hours, disrupted my sleep, interferes with my working cause somebody is always sleeping.  My income has dropped a lot since they moved in.  I can't quite figure out what to do, how to deal.  It will take some adjustment.

It will be nice getting a little rent this winter and having someone else help heat the house.

LOL; I may have to start delivering pizza myself.   

Willy

[DougV]

That loud knocking sound is me banging wood with all my might.....

(Anyone happen to know the origin of the expression "knock on wood"?)

All of 'em?  GF's et al? Yep I reckon that qualifies as a slight change of pace.    Dang Willy that's gotta be tough.  Ah man, don't tell me, that's gotta cut into the time you spend dating supermodels so I have to assume your love life went out the door as the kids came in.  I keep expectin' a knock on the door myself.

I know there ain't a dang thing any of us can do to help, but best wishes.

Doug

[willy]

  Dang Willy that's gotta be tough.  Ah man, don't tell me, that's gotta cut into the time you spend dating supermodels so I have to assume your love life went out the door as the kids came in.  I keep expectin' a knock on the door myself.

I know there ain't a dang thing any of us can do to help, but best wishes.

Doug

That's the old adage; in reverse as it pertains to kids moving back in.  When God opens the door (in which kids, boyfriends, girl friends and dogs he closes....a window ..... as in my window of opportunity.   

Oh darn, I meant to use the  emoticons!!!!

I will survive......

Willy

[Hank's mom]

Funny thing about old adages - they're, well, OLD!  No really - it is wonderful that you are helping your kids this way - it's a hard thing to do but in cases of people like you have spent so much time over the last several years being the single dad, on board 24/7 like it or not - it might be harder for you not to do what you are doing.

And, economy wise, think of the $$ you're saving on plane tickets home for the holidays, not to mention all that extra methane keeping the house nice and warm this winter - lol.

Keep smiling, when your turn comes it will be in spades,
Susie

[mindy]

Hey Willy and all my friends, I am now thanking my higher power, GOD, and surrendering each morning my will, the third step A.A. prayer.  I too believe that when one door closes, another one opens.  Willy, you know I am now a single mom of identical terroristic adorable twin little girls and a 26 year old son.  He is still incarcerated because my deceased husband and myself raised him incorrectly, but now he is a grown man and when he is released, he knows all the journeys he shall make will be up to him.  Being a single woman at 48, first time alone, all my life, let alone single woman of 48 with 2 little girls, a dog, a cat, a hermit crab and 2 betta fish, all the bills, chores, etc.  dependant on me.  I can't believe that I am the same mindy I was when I walked away from the big H. in Nov. 2002, let alone the mindy I was on the 2 rounds of tx that did not ultimately work.  I have learned to work the 12 step program, have an awesome sponsor, she knows not one thing about what we all share, Willy did you ever hear the song knocking on heaven's door?  or Amazing by Aerosmith?  Just the way my brain has now changed and the words now mean what Steven Tyler was singing, he has the same illness we have, is awesome.  Anyway, the girls are jumping on my bed and my A.A. Homegroup meeting is this a.m., a babysitter meeting.  One Day At A Time, Our Fellowship is Awesome.  love you all

[willy]

You know Mindy..... I raised 3 of my own kids and one step daughter from a young age (with a wife though...) 
I still have the 3 kids living with me (again) and 2 others (kinda old kids, but nevertheless...)

The thing that I can almost certainly tell you is that they become less work.  I can't imagine doing TX with 2 young children.  I have a feeling that IF your histology allows if you were to wait.... your treatment will be shorter and the girls will need a little less "hands on".  I know....they will still be a bit of work but they may be better able to feed themselves or clean up after themselves.  Who knows, maybe your situation will improve as well by then.

Triple therapy will be a harder treatment.  It will be every bit as bad as SOC but with a bit more sides thrown in or perhaps the same sides except worse.  The good thing is that the triple therapy lasts for many only 12 weeks and those sides quickly resolve.  Sooooo.....somewhat worse sides but perhaps a much shorter treatment by about a half year.

Yes, I remember seeing Pat Garrett and Billy the Kid.  They played "Knocking on Heavens Door" when Chill Wills got plugged.  Sad song.... I hope you are not feeling that way.

Here's the Amazing Grace Vid you mentioned; great rendition!!!

http://www.youtube.com/watch?v=Zjogu3Uk9Fs

You've come a great distance.  yes, you've got a ways to go but you are getting there...... not as fast as you want, but getting there nevertheless.

best,
Willy

[Hank's mom]

Hey Mindy -

You sound positive and committed to yourself being free of demon and making life wonderful for your girls.  So many think it is about wealth and nice things, but the fact is making yourself whole and well is the greatest gift you can give your kids.

When I first found out I had HCV was for my kids - treat for the kids because I need to be here for them just as I need them here for me - they're worth it; squabbles, laundry and all.  I also was angry that I didn't know sooner - I was ss tired, so easily overwhelmed because of the exhaustion, for at least 10 years, no kidding, which was why I asked the doctor to find out what was wrong, yet I hadn't been able to be there a 100% for them.

If I could do it all over again, I would know sooner if for no other reason than to make sure my job was covered when I could not do it. This haunts me everyday though I can't change the facts. You are in a position to do all of that. 

I think I remember suggesting you seek some respite help for when you are really struggling from tx, or just so you can plan a piece of a day or week when you can just be without it effecting your kids, your treasures.  Perhaps now that you are part of a group who does know your struggles all too well, they can come up with some suggestions, names whatever to give you the time so you can be the best mom you can be.

Good luck with it all and let us know,
Susie