Who's going on new treatment

[MissyMouse]

Hey gang,

Who all is going to be starting treatment with the new drugs?  Willy and Helen ... are you two going to make an attempt now?

Mouse

[DougV]

Tomorrow makes one week.  Nauseated this morning for 1st time but not sure it's the meds as I occasionally get nauseated in the morning. And so far that's been it.  Oh well that and an odd side, anorectal burning when defacating.  That's a bit interesting in the morning, but is supposed to disappear.  Worst part, and this will probably sound funny, is you have to eat 20g fat with each dose of Incivik.  When you try and eat healthy that is a tough requirement.  I start weekly labs tomorrow.  Be interesting to see what a week brings.

Doug

[Helen]

Not yet for me mouse. And truely I dont know if ever. I have very mixed feelings and go back and forth with it. Ya know one minute I think Im gonna do it and then the next...naw....Im not ready, and I know its like anything and you mostly can never be really ready for something like this, but what can I say...Im a big sissy and just dont want to rock the boat. I can tell you for sure that I couldnt do it right now though. I have my plate so full,with my brother's passing my life has been in constant turmoil and stress. Im trying to work on that right now.

 But I will certainly keep my eye on how people on the new tx. are doing....Doug.  Like I said Im all over the map with it.

 We're getting ready to head down to Corolla N.C. for My son Alex's wedding,he's getting married on the beach.  We're leaving Sunday morning and staying for a week. Im hoping to relax a little and just let the stress flow away.....I hope. 

 Good luck Doug, Ill be watching for your posts.

 Helen
 

[DougV]

Helen,

If my liver wasn't bad I would not treat.  Oddly enough maybe even more so now, for while new drugs have improved odds the have also radically increase the odds of unpleasant side effects.

Relapsers almost have no choice.  We even whup tx naive on odds of SVR.  But stage 0-1er's and on the wrong side of 50, they have a choice.  Just my opinion but I think if you keep weight down, don't drink, and liver a liver friendly existence then there is a pretty decent chance liver failure ain't gonna get ya.

Where I am really stuck is stage 2 folks.  Guess I start leaning towards treating and above that, depending on age, heck yeah. Otherwise get an annual Fibrosure monitor for HCC as well and as long as the liver stays stable bah humbug.

Oh I should note for anyone reading this....

This applies only to those 45+.  Less than that I'm treating the second I hear Stage 1.

Which BTW Helen aren't you 25? 

Doug

[Snowflake]

Doug V, Wishing the best of luck...hope your odd side does go away soon..humm, 20g a fat with dose Incivik, how many times aday do you have to take that? What do you eat to get the 20g of fat?

Helen, All my best to you...I sure hope you have a great time at your sons wedding and are able to release all the stress you have been feeling.....

Take Care
 Winona

[MissyMouse]

Didn't even realize you had start Doug ... good luck as always.

Mouse

[MissyMouse]

I'm really curious to see if anyone experience skin issues with these new drugs.  My last round of dual therapy really took a toll on my skin ... I'm still doing battle with it 8 months later but it's almost healed.  The only area that isn't yet is my hands/fingers.  I've slowly started adding my regular shampoos, soaps and lotions back into my life.  I am going to stay with the Vanicream sunblock and the Clinique cosmetics though.

Mouse

[DougV]

Missy,

Lot of people are having rash issues.  56% do.  But most seem to be temporary in nature and controllable with OTC creams.  Several people have been told to go the other route ( ok I confess I forgot how to spell it) if the had severe rash issues with dual therapy.

Of course I'm already on it.  It was approved the 23rd, I waited until reasonablu reliable source let me know they were getting ready to ship out.  Saw my doc on the 1st.  Took awhile but no matter drugs hit shelves on Monday while I was on phone with the pharmacist, I had mine in hand couple days earlier and started with shot a week ago this past Friday.  Would have started two days earlier but had 12 hour clinical Friday day and waited to be safe.  Shouldn't have as it turned out.

Winona,
Milk, cheese, olive oil, cream cheese, toast swimming with butter, Planters has little bags of nuts mixes, the heart health one has 22 gram fat. Peanut butter.  Healthy stuff like Deviled Ham.  Chips and dip.  Grab lunch at fast food place, just about anything will do.  Three times a day, or 60g total.  With at least two of these being odd times so they end up being in addition to regular diet.

Oh joy I see it is about fat time.....

Doug

[willy]

I've been wondering if i should check trials out again.  I got a call on the quad therapy Vertex trial but I wasn't sure that some of the arms were going to be potent enough or for sufficient duration.  Turns out that 2 of the arms were closed due to breakthrough; the arms in which only TVR and VX-222 were used w/ no SOC.  I did talk w/ one quad therapy guy and it was a tough 12 weeks.  We may soon hear the preliminary results of that trial.  The TMC435 phase 3 looks good too, there are a number of good trials coming up.

I am struggling trying to keep my health insurance paid up and so i would like to wait, but i live in some fear that if i come up short some month I will have no insurance.  I'm still coming to grips with whether to get it all over or wait a little longer.

Willy

[Snowflake]

DougV, I hope today finds you doing better with the burning and feeling nauseated..I was just curoius what they suggested you eat to get the 20g of fat for each dose..Looks like you still can choose healthy things like the peanut butter and nuts..and hopefully you won't gain to much if any..I wish you well...


I never got a rash during treatment, but my skin felt like a sunburn, tight and stinging.. I still have it to this day...Treatment never improved any of my health issues and i have developed more since completing tx..It is still a rollercoaster ride for me..one day at a time!

Take Care All
 Winona

[Betty W.]

I second the "GOOD LUCK", Doug !!!!


Thinking of you, Betty

[RiverRandy]

I will start the new treatment 10/10/11...this will be my 2nd round of treatment.  I was treated for 48 weeks in 2008 and did not SVR on week 48 my viral load was down to 120 from 1.5 million.  I had a bad sign effect or reaction to the ribavirin after the 3rd week of tx with a bad rash which cause blisters , my doctor DC the ribavirin and continued the interferon injections once a week for the duration of the treatment.  Now they are recommended the triple threat treatment with the Incivek , ribavirin and the interferon.  If I have any side effects to the ribavirin or incivek (rash bliistering again they will stop the treatment).  If I was allergic to the ribavirin why would I not be this time around?.  I am willing to try it one more time.  In my case which is different from others my diagnosis and symptoms went undetected for 20 - 25 years and by the time I had my liver biopsy I had stage 3/4 1a and majority of the damage to my liver had taken place.  I have to say I am feeling better now than in the past two years, besides the fatigue that I will always have.  It is nice to see everyone again, Willy, Doug Betty, Missy, Mom, and to able to bounce off any questions or concerns regarding the new treatment.

[MissyMouse]

I treated 3 times and each time was very different for me.  First time big issues was unrelenting fatigue and electrolyte issues, second time was anemia and would up on procrit, third time it was the the rash.  So maybe you'll get lucky not get a rash.  Think positive.

Mouse

[DougV]

Randy,

Hate to tell you this, but no different than many.  Both Missy and I have almost the same story, had it for 30 years, had no clue before 2003' and biopsy shows same as yours.  In fact this is more the norm than different.

Second I finish this text I will PM you with my phone number and email address.  You need anything please feel free to call, text, or email with any questions or concerns with triple therapy.  I help run another HCV board and am nursing student so have access to information to where if I don't have the info you need I can get that info one way or the other.

Doug

[RiverRandy]

Doug

 I understand that this is the norm vs different, many cases go undetected for years as in our case.  I really meant to say the others that have contacted this disease it is much better if you can catch it earlier than later like we did. I am not sure if you knew that I was a Senior Chief Hospital Corpsman for 24 years in the Navy and spend many years working in the Emergency rooms and other wards in hospitals.  But never work directly with any Hepatitis patients .  I 've done a lot of reading in the past 3 years on this subject and I still feel lost at times regarding all the treatments lab works and just what everything means. I have one of the best hospitals and doctor's that treat hepatitis C patients in Cailf.  Loma Linda Medical Universary.