Round 2 Trying Triple Therapy

[Jazzdenova]

I am up in Iowa City today (Apoligies to Willie - pretty early appointment). Taking a training class for the triple therapy (telaprevir). Insurance wouldn't cover it but Incivek let me get in their program. So sit here with my bag full of drugs thinking the more things change the more they look the same.... Since I didn't go to burning man because I am an old fart now with kids, I guess I have to settle for burning ass.
I told myself I would try and stop smoking if I got approved so I should be a real terror on my family and workmates for a bit.
I will probably post more, pardon my whining... you are stuck with the insanity though.
Will let you know more as I do and my last pack dwindles....                                           

[MissyMouse]

Congratulations Jazzy?  I think?  Oh and whine away dear... we are always here for you.

Mouse

[DougV]

Congratulations, good luck, Chantix, good luck to your family, know your local gun laws and try and be nice so that spouse does not avail herself of said local gun laws.

It's been interesting so far.  Hgood luck with 20 gram fat requirement.  Be curious to see how you do with that.

Doug

[DougV]

Figured might as well do this here...

Three most common complaints, both that I see online and as reported to me by my GI in his office:

1. Fat requirement

2. Anorectal discomfort and/or hemerrhoids

3. Rash

Fat requirement is really hard down he road.  If you have issues with number two above be cautious using nuts as fat source.  I gained almost 20 lbs because I choose unhealthy fat sources.  Did you know six double stuff Oreos has 21 gram of fat?  Srictly a fat requirement, you wanna chug oil you can.  Also was problem for me due to timing.  I don't eat at 5:30am or 9:30pm so for me that was bunch of extra calories.  You almost certaily will get loose stool and unless you are big milk drinker using lot of cheese and milk for fat might cause you issue.

For number two, and been there done that and it can be bad and incredibly painful.  Moist wipes, prep h, etc.  But I found best thing was to immediately wash with soap and water afterwards, nothing helped more.  It tends to pass for many and get more tolerable but jist in case, please accept my most heartfelt sympathy.  . If it gets bad enough there are prescription steroid creams but I have no experence with them.

The rash, understand it can be very bad, watch too much sun, seems to dehydrate you more and dry skin so stay well hydrated.  I did not have any photosensitivity this time but did before.

If you had issue with anemia round 1 watch out, Incivek tends to make worse for many.  In that case I strongly suggest a hematologist consult before starting.  As saved my rear this time and allowed me to not reduce which after three tries was important to me.

As with regular treatment, eye doc and dentist good idea before you can srart.

On not smoking, serious on the Chantix.  Tried every method known without success.  Took Chantix and have never smoked again, over 5 years now.  Weird dreams, really weird, acid flashback kinda of weird.  Wife too although first time she quit taking them and took her two times to makeit, been almost three for her.

For me, no worse than Ifn/riba.  And it is really cool to see your VL drop so fast, millions to 320 in two weeks to zero in 4 and that is very typical.  Nice motivator.

FWIW I have blood chemistry issues with Riba, but disvounting that I have really felt good.  Missed the one day of clinical but that has been it.  This is doable.

If I can help in any way let me know.  Be happy tp pm cell number if you like just in case.

Sure wish you all the luck in the world.

Doug

[willy]

I think I would enjoy Burning Man.  I read a book about it years ago, was once an art major and think that a week on the playa would be a wonderful thing.  I don't think age plays into it personally.  You bring up the idea of a wonderful exhibit, a huge orifice that sprays fire.... an "old faithful" of sorts; maybe one could get funding by Vertex.   

I never told Doug an old joke that may apply to Incivek;

"why do you always eat vanilla ice cream right after eating a spicy hot mexican meal?"

....because the next day when you are on the toilet in discomfort you can be thinking; "come on ice cream!!!!"

Well, I think you'll get there Jazz.  This seems to be a pretty effective treatment.  The cigarettes are a different matter but you should quit them anyway.  I just got the word about 2 weeks ago of a friend who had smoking related cancer.  Such a great guy and now I don't know what his status is.  If you can do both you may truly have a good chance at sticking around, but man..... quitting is hard.  Yes, a number of people had good luck with Chantix.

We can connect one of your trips back. 

Vaya con dios,

willy

[Jazzdenova]

Turned out the "training" meant actually doing the first shot. I wasn't to thrilled about it and was complaining, what if I get the shits on my 2 1/2 hour ride home. But I certainly wasn't going to go through another 5 hour drive. So I am going to delay my shot one day  for the next 2 weeks to get to a friday slot so I have a week-end to recover.... the nurse was happy to see me go.....

I also have a little fat stored up for those rare occasions I need it.... but any excuse to stock up some can't be all bad. Wife brought home a big tray of huge muffins from her work. : )

I have noticed I am pooping more and only 1 instance of slight itch where I just used a warm wet washclothe.

It is very hard for me to drink 105 ounces of water a day but I am doing my best.

The smoking isn't working as planned as I have had some other stressors going on but hopefully I can get my act together soon.

Other than tiredness and having to get up to pee at night from drinking all that water I guess I am OK. No Rash at all. And they said I could use this as an excuse for my thinning hair....

[Snowflake]

Jazz, Went for training and got first shot instead "wow" nothing like being blindsided...and with such along drive...
I want to wish you all the best on your journey...yeah, smoking is a tough one...play it by ear...

You Take Care
 Winona

[MissyMouse]

You CAN quit smoking Jazz I promise .... it ain't easy but it can be done.  Doug and I are going to be the next spokes people for Chantix and together we will help you through it.   .

I even had the nerve to quit while I was on treatment (against my gastro's advice, he said I had enough on my plate).   I waited until a couple months before round 1 would be complete and then started the Chantix.  My feeling was I was going to get all the misery out of the way at one time.  By April of 2007 I was off treatment and smoke free for a month.   It was incredibly, surprisingly easy for me with the Chantix.  I had zero nightmares.   After about 3 weeks Bill knew I was done when he got up and saw all the ash trays in the sink (he never smoked in his life).

I've now been smoke free since March 4, 2007... I do still have cravings but I stop and think of all the money I spent on them and on trying to quit and it gets me back to where I need to be.   I have however noticed that my shopping addiction has gotten worse (well up until I had my 38 D's wacked off ... waiting for the new ones so I can get another new wardrobe).

I am so glad a I cleared (1 year PCR is on 10/14) without having to do the new stuff.  I had enough overproduction of defecation on the old treatment.  I don't know if this will help but both Cottenelle and Charmin make wipes that you can flush.  They tend to be on the smaller size so you could always go with the regular baby wipes (or adult wipes) and take the trash out ever day.  I use the Cottenelle just for daily use and I buy the baby wipes by the case full and carry them in both cars and my purse for emergencies (being a granny teaches you these things).

Good luck .... we're all rooting for ya!

Mouse

[Jazzdenova]

(Warning. I will not pull punches or gloss over my thoughts so know this before continuing on)
I have been good in not missing the pills and trying to eat fatty( even though I have been trying to steer away from that for years). I am trying with the water and not doing to bad.
Trying to figure how to shit is a different. I have always been fairly regular so an extrapoop  a day wasn't hard to squeeze out .
However.. this whole mystery shit with a kick of 1000 Habeneros that randomly slots in is a different story.
With only going on a week I have had 3 episodes and they have been painful enough for me to question whether it is worth continuing the treatment.
Yes I dab with towellettes and have sat in a tub remositurizing and making sure some toxic film is not developing and descrambling my brain hoping to pass out. I have also stopped contraction help or push when pooping as that seems to help.
I tell myself it must be working, as this stuff looks as toxic as its smell is foul.
And once I am dabbed and cleaned up, I am OK and the next poop is nothing but normal usually but I cringe and hold off as long as possible as the last memory lingers.
I am tired, not exhausted, just no extra energy. I try and do little chores just cause I know exersize is good for over all well being but am not really into it. I need to get the gardens ready for winter and just try to enjoy the warm afternoons of an Indian summer.
I would love to have some apple cider but think it might be better to pass until this ordeal is over.
I did get my winter wood for the fireplace all done, but I just want to lay in the sun like a turtle with my butt not moving in any direction.
I am still working but have received several comments about how I look a little off.  My concentrationis is Ok.
One thing I noticed is something in this combination early on clouded up my contacts for awhile.
I am a guy who usually sleeps in his contacts for weeks and have been taking them out every day now as the eyes feel dryer.
Go for my first week blood draw tomorrow and then 2nd shot. Almost looking forward to the shot as I think the Teleprevir is looking for something to cling to before camping in my colon.
Anyways , thanks for your support and help.

[DougV]

1000 habaneros?  Good so far then you only have a mild case.  And not every time, thou are truly blessed.

I too would question whether treatment was worth it.  It will go away in time.  I have had kidney stones, under Incivek I ranked BM right up there with passing stones.

You do have my sympathy.

Please give the fat my regard.  I sure don't miss it.

Oh, I did occassionally use Immodium to minimize the unscheduled.

Hang in there.

Doug

[Jazzdenova]

I finally broke down and used some of the tube of hemorrhoid medicine that I bought before I started and was knowledgeble and it has worked pretty good so far . Anything is better than being miserable though.
I kick myself for not just using it from the beginning but didn't think it would get as discomforting as it was . I must think I have a fairly high pain threshhold, mixed with some stupid machismo thing where it seems right to have a red an raw ass cause it is "natural". Than pain free with a butt frosted like a cake.
I wonder if I can spread this stuff on pancakes.....
But at least work is bearable now and I am getting more done and hopefully not being to much of a burden on those around me.AndI got some good sleep.

[Jazzdenova]

Made some home made spaghetti sauce with fresh onions and  leaves from my herb garden. Ahh... love the smell. And made a chicken dinner using some of my neighbors peach freezer jam made from my peaches. An experimental dish but came out quite well actually. It was a good week-end. Went and saw my kids marching band competition, all I can say is wow! there is some major unsung talent out there. Weather has been awesome.

The treatment is going OK, as long as I have done the prep work the butt has been a non problem. Wife says I am moody, trying to think twice before talking once... we will see... : )
I think I am acclimating a bit as the eyes are not cloudy all day now

[DougV]

All in all sounds like you are doing well.  But chicken and peach preserves?  Details?

Shame about the wife's hearing though.  Least that is only explanation I can come up with as obviously she is not hearing you the firtst time, forcing you to repeat which she then takes as delayed response.  Try and be gentle letting her know the issue is her not you.   

Doug

[Jazzdenova]

Well Doug the jam is what they called a freezer jam. To be honest I don't know how they make it, but it looks a little like apple butter( but with peaches) is stored in the freezer but spreads like a tub margarine and does not freeze solid.
 I cut up the chicken and started a stir fry type browning with some red onion from my garden. As the meat whitened, crusting golden. I added a dollop  or two (dollop= about a mouthful    ) of the freezer jam and stirred til slightly translucent glazed. I was warned it had sugar so tried not to cook to long. I had some peene noodles that were slightly buttered and mixed together.
I had kept the vegtable seperate as not all my experimental dishes have been sucesses in the past and it pays to keep something in reserve. But later sopped the green beans in some of the juices and it was good.

Shot 3 done. had a slight flu type feeling, nausea and ended up sleeping most the week-end. Honestly don't feel it was the treatment as the shots don't usually affect me and there has been a bug going around. Just glad to feel better... had to go back to work without getting alot done around the house... guilt is almost as bad as nausea as want to do alot before it gets cold... don't know why.. guess the ant in me fighting the grasshopper...
But life has not been too bad and have an appointment the 25th to see if all the suffering has worked or been for naught like Ray had to endure.

[DougV]

Ray was I think second I know of that failed to reach und by week 4.  A whole wopping lot more have.

Chicken sounds pretty good.  Now I gotta figure what I am gonna eat.  Wife isn't here, cleaning kitchen not sounding exciting, maybe takeout....

Glad your doing well.  Been a few of repeat folks that have felt this round a bit easier.  Not sure why Incivek and its time and dietary requirements are a pain, labs all over, I see a lot of low platelets < 50, but it seems easier.  Maybe just that 4 week und, or 24 week, or 85%
SVR, but bottom line it just does not seem that bad.

Hope you continue to do and feel well.

Doug