Clock is ticking, Boceprevir

Question

Just got back from the Hepatologist.  We expect to start treatment in 3-4 weeks.  There was an issue with my labs today, in that my white cell count was low, compared to the labs I did in May, and since they will drop further during treatment -- this is a concern.  Soooo I have to do labs again first thing in the morning.  Initially, I was going to do triple therapy with Incivek, but now my doc has decided to put me on Boceprevir (Victrelis).  Her main reason is because more patients are struggling with anal pain and "firey" bowels.  I do not recall what the sides are with Victrelis, so please let me.  I got into work late today, so will check back for responses later today.  Thanks in advance for any input.

Also, for those who haven't started and are curious, for me my doc said it will be -- 2 weeks for the insurance, another week to get the meds, then a 2 hour instructional class by the NP, which includes the first shot.

This forum has been a huge help in minimizing my fears, so I thank ALL of you for your support and advice.  In this moment, however, I am overwhelmed, nervous and just processing everything.  (I have Hep C, Gen 1)

roostermom · Accepted Answer

Your doctor usually supplies you with a small cooler for the meds. My insurance company requires a signature upon delivery by ups or Feds because the Incevik alone costs $17,000.00 per month. The good news is that only the interferon needs to be refrigerated, and you will most likely be injecting at home so you won't need to cart around a lunch box, just a small pill box!

dreamcat · Answer

where is the best place to give yourself the injection?

beeblessed · Answer

Thanks Indy!  I'm getting all stocked up on water, toilet paper (stop laughing Will), cat stuff for the kitty and non-perishables, so I only have to make minor store runs for perishables.  Praying the best for you and the rest of us who are beginning soon.  For those of you already in the midst of treatment -- STAY STRONG and when you feel like you can't stand, let God carry you through.

indy531 · Answer

Good luck and may SVR be yours! I begin 4 week lead in this Fri, and then Vic for 12. It is reassuring to hear that sx are manageable (i'm praying hard, tho).  Hep doc has a patient advocate I will be contacting tomorrow about coupon for Vic and ins info. God bless all.

EyesofBlue55 · Answer

You only have to do the Incivik for 3 months.Its approx-$49,000.00  for the 3 moths supply.I have bc/bs and the copay for me will be 40.00(inf) 20.00 (riba) and 0 for the incivik.

edge2011 · Answer

$17,000.00 per month? x 6 months = about $100,000.00 for the full course??? Wow!!
I wander how BCBS PPO would pay for this when it is not supplemented by any other insurance. I wander the 30-40% is patient's responsibility?
Ann.

beeblessed · Answer

O thank you!  This helps.  Geez, we should all be in the pharmacutical business.

beeblessed · Answer

Hi Babs!  Thanks.  I will be on an injectible (and pills), so I will definitely ask questions and have a demo for that.  I will do my shots at home, as I will do them on Friday nights.  Contemplating having meds sent to work IF there's no personal info/description on the box.  Hate to do that but if they can't get into my building while I am gone, I might have to go that route.  Thanks for sharing your experience.  But I think I will keep my eyes open while doing the shots........otherwise......I might inject the cat instead. (hee, hee, hee)

babs824 · Answer

this is an important meeting. be sure to get a demo for shots if u are not familiar. then ask if u can have the syringe to play with so u get less nervous. ask questions that come up and bring a list with u. my meds were delivered at home so i always took shots at home. i am not sure what your protocol involves. if just oral meds that need to be cool bring a small beverage cooler the size of a lunch box. shots would be hard to do at work unless u had a nurses office with privacy til u get very adept. by the end of tx i could do with eyes closed but early on i was very shaky. it does get so much easier to handle the med issues as they will become routine. hang in there, babs

beeblessed · Answer

Hi again.  Just read through a couple of pamphlets the doc gave me yesterday.  For the "Patient Teaching Session", it says: 
The session is a time for you to ask questions or share concerns and to give information about treatment.  The session will include proper storage, preparation and administration of your medications, as well as side effects management.  Please note, at the session you will also be taking your first does of medications.  Allow approx. 90 minutes for this teaching session.

And I just found out that 1 medication has to be refrigerated, but I am at work all day and wonder how I can make this work, without taking too much time off since I don't have much left for the year.  Any thoughts?

beeblessed · Answer

LOL!  Thanks for the tips on the bananas and rice.  Tea sometimes bloats me, so I'm gonna tread lightly.  Coconut macaroons??  Okay, I'll give it a try.  Being on this side of the clock, I can't imagine this being fast.  I looke forward to being on the other side, like you :)  Thanks for your encouragement!

babs824 · Answer

wishing u the best. speaking of which buy the best t.p. available. wipes are good too. dont know if bananas rice and tea help clog u up on tx but with other causes they are good for the runs as are coconut macaroons! i started about this time last year and i was very nervous. time went fast and it seems so long ago now. hang in there

beeblessed · Answer

Hi Willing!  That is just wicked about the popsicles and TP. LOL!  But I took your lead and asked my family to bring me a bunch of TP, so I don't have to constantly go to the store.  Gives them a reason to visit.

Sandy -- You too?  Good to know, thanks.  I'm hoping my labs are better this go round. Otherwise, I envision myself walking around in a mask and white gloves, to prevent picking up more germs and getting sick.  Quite the fashion statement.

Frijole -- Good to know. I'll keep an eye on your posts and we can support each other through this.

Trish -- I saw your other thread.  Way to go for the Canadians!!!  Congrats!

Nygirl -- 10 minutes?  Wow.  I'm fine with 2 hours but maybe we'll breeze through and it will be a bit less.  I have learned so much here, so I'm already up to speed on things I was totally ignorant on a few months ago.

Trish77 · Answer

Thanks can-do and Cindy, much appreciated.

Trish

EyesofBlue55 · Answer

I read that the wholesale price was  $1100.00 a week.So probably  gonna be close to the same price there.Unless the ins companies up the price for patients. I googled it  cindy

can-do-man · Answer

Trish, cost here is 1100 per week, minus the rebate they were offering
http://www.nytimes.com/2011/05/14/business/14drug.html?amp

beeblessed, wishing you the best, anemia was my worse side, talk to your doctor about using procrit.

willing, hows your HGB holding up, also had some diarrhea, but it seemed to be about the same as with just SOC for me.

frijole, thats funny girl, one nice thing about indiana in the summer time, plenty of cornfields.

nygirl7 · Answer

Two hour class I just can't imagine that it didn't take more than ten minutes when I went and it was just fine - two hours, gah!

Trish77 · Answer

Side question for you Victrelis people in the U.S. and I hope you don't mind me crashing in your thread.....the Canadian gov't just approved Victrelis at a cost of $1053/week approx. What is the cost in the U.S. per week for Victrelis please?  Thanks.

Trish

willing · Answer

yep, alleys are there for a reason. For me relative to ifn/rbv/alinia the gastric distress of Vic seems mild (alinia was the worst by far) but it definitely contributes. Good luck with the drive tomorrow. Not great news about the bx, but it emphasizes that's it's time to get the show on the road. You might ask  whether, given your documented record as a relapser with a good response (near cEVR) , you can skip the lead-in.

frijole · Answer

bee - we should be starting about the same time.  Supposedly my doc already ordered the meds. He said 2-3 weeks for the insurance too.  His Medical assistant said normally they request more information and they will send it all back in.....  so, we shall see.

willing --.  TP in bulk, eh?  Now that is a scary thought.  I had some pretty (maybe not so) funny incidents walking in the mornings on riba and interferon where I had to duck into an alley - could not make it back to the house.  Good thing I walk before dawn.  Tomorrow is my day to see the heppo - I spoke to him on the phone yesterday and he said the biopsy stands.

willing · Answer

good luck, you'll have plenty of company either way, There are lots of people starting triple. 

It's pretty easy to tell the two groups apart. The INCI crowd is busy trading tips on creative ways to insert popsicles where the sun don't shine while the VIC crowd wants to know where to buy TP in bulk. 

I'm now in w10 with VIC. Sx are no fun, but nothing major.

sandysf · Answer

Hi there.. my insurance approved Vic and pharmacy ordered in two days. I have Blue Cross. I also started with low WBC because of 8 weeks of SOC. Am already doing neupogen. But I am only 4 days in with Vic and so far, the only noticeable sides (other than crazy bloodwork results) were bad taste in mouth and diarrhea first two days. Wish you luck, I am sure it will be fine!