Incivek vs. Victrelis

[catmagic0406]

I have probably asked this before.  I haven't started treatment yet, but it's coming soon.

For me, Incivek sounds like pure hell.  I'm fragile, I HATE fat and can't tolerate it now, let along 60 mg a day. I could not deal with the Anal Dragon Fire.  I'm very emotional - we're working on stabilizing my moods.

Okay - please tell me the pros and cons of each of these PI's and why your provider chose it for you.  I am taking the list to my gastro next week.  

And I AM going to get into Dr. Gish somehow.  I can't seem to get a referral letter - uncooperative staff and mostly absent doctor.  My pdoc has agreed to write the letter, and Gish's Team will accept that considering the stonewalling I am getting from the gastro.  With a 2+/3+ I need to get on with tx NOW.

Gastro appt. a week from today.  I haven't even SEEN him for 6 weeks.  He took a month's vacation and they staff won't get me in this week.  I mean WILL NOT.  A bit of an attitude there, so I don't want to stay with that office anyway.  There are NO other gastros here who treat HepC except one decrepit old man who couldn't even remember me when I went in for CT scan results that HE ordered and was looking at.

I think Victrelis, even with the anemia issue, would be much better for me.  My gastro so far (in the two ten minute visits) advocates Incivek.  No so fast, mister, this is MY life.

[aqua57]

thanks for your informative post i will keep the medicines in mind. i'm concerned about anemia also, because i did the rx in 1998 and had severe anemia and was constantly hyperventilating, but didn't know it at the time. good luck to you.

[aqua57]

thanks for your informative post i will keep the medicines in mind. i'm concerned about anemia also, because i did the rx in 1998 and had severe anemia and was constantly hyperventilating, but didn't know it at the time and the dr wasn't very knowlegable.  good luck to you.

[catmagic0406]

I was thinking about that fiber.  And thank you for that information.  We learn SO MUCH from each other on here.  I am still waiting to hear from the Gish Group.  No one answered the phone at the Vegas office today.  I think it's just a one person office type gal, so maybe she's out sick.  I need to find out if they received those 25 pages on the fax. I also need to find out if the pdoc's letter is acceptable.  God knows it won't be easy to get it from the gastro's office - not him, but his office staff of two people.  We have already butt heads more than once.

[stormy456]

Hi - Good chance Gish's team will recommend INC, they definitely lean that way.  I know they're prescribing both, but are definitely more inclined toward the INC.   As for anal shards of glass, 15 g of water soluble fiber at night helped immensely.  There are quite a few posts dedicated to this super fun subject with lots of great advice.  

[Naya888]

Cat I feel for you I feel your frustration but there is so many people like you at your age fighting bravely this virus .You need a knowledgeble  doctor who is encouraging you to succeed .Think positive now.Stay strong.

[catmagic0406]

You get it.  As I have written above, some of these doctors just leave us out there hanging - on a lot of issues.  But THIS one is nothing to ignore.  Didn't they all take an oath?  Yes, they did.  I am in a severe funk tonight over all of this.

I wish I could wait for the new tx down the road, but at my age and stage, I can't take that risk.  My depression is caused by the fatigue and the fact that I'm not even treating yet AND that I know that being cirrhotic, my chances of clearing the virus are 62%.  I so admire the sheer bravery and determination of those who treat more than once.  But we are looking at our lives on the line.

[catmagic0406]

I want to commend you for going thru the 12 weeks of Incivek on your own.  That had to have been a nightmare.  If I am to be treated with INC, at least I hopefully will have a team of doctors who will be there via phone call 24/7.  You are one strong lady to go this alone so far.

I am now suffering completely debilitating fatigue.  I live in the desert; today it was 107 and I had to go to town for groceries.  That is not going to happen anymore.  My husband will have to do it.  And I haven't even started treatment yet and feel horrible.  My blood pressure dropped to 85/53 when I was in the supermarket.  I thought I was going to pass out.  Fortunately, people in there got me a Coke to get some sugar going and I had to sit there for a while before I went outside into the blistering heat to drive home.

I slept for five hours straight when I got here.  At least I have someone here, my husband, to take care of things (3 dogs; 4 cats too).  He's not emotionally supportive, but I can trust him to be sure I get my meds on time.  I can trust him to make me eat, but as far as fixing those fat-filled 3 times a day meals, I'll need to fix those.  

I just pray that at my age (65) and with Stage 3+ and steatosis, it's not too late.  Last time I saw the gastro when we discussed the steatosis he played it down.  Let's see how he tries to sugarcoat the stage 3+.  Regardless, I'm done with him.  I hope.  The group in Vegas has to approve my "application" before they will schedule my appointment.

What steams me so much is that for the past 5 years I have asked doctors (they come and go here) for a biopsy, and none of them would order one, said my labs and ultrasounds were fine (which they were), so I didn't need one.  WELL, I ASKED FOR ONE.  I had a feeling that things were getting worse no matter what the clinical findings were.  How dare they?  If that had been done, this progression would have been caught before it got to this point.  I would have tried the double tx.  Now.......being pre-cirrhotic and five years older, things don't look too optimistic.

If I EVER hear anyone say to me (again), "Well, we've all gotta go sometime" I might smack them.  It's true that we do, but health care providers are SUPPOSED TO PROVED HEALTH CARE.

I am totally depressed - can't stay awake.

[willbb]

We always have to take our personal health into our own hands, pretty much.  But with this monster virus, there is NO excuse for doctors being unavailable

+1

Will

[Naya888]

I would drive 100 miles too ,it is worth it !I was devasted and no other doctor would take me till after those 12 weeks of Incivek.Good luck keep us posted

[catmagic0406]

Thank you, Naya.  I just hope I HAVE hope since I'm 65, have bridging fibrosis and steatosis as well.  My gastro is a total dolt.  His office has lost my psych. report for the second time.  I will see him next week, let him talk, then tell him I am going to a hepatologist - even though it's a 100 mile drive.

I guarantee you I would have been on my own too with that guy.  He is in the office maybe 20 hours a week max, and refuses to take phone calls or call back.  And no back-up doctor.  He just got back from a month long vacation.  Nope, ain't gonna work.

So I'm glad you are changing docs. too.  We deserve a whole lot better than what we have been getting, which is essentially nothing but, my case, orders for a CT scan and biopsy.  He brushed over my CT scan after I waited 3 weeks to see him (but I already got it on my own), and I don't know what he'll say about my biopsy (which I got on my own too ~ I was not going to wait five weeks to see him.)

We always have to take our personal health into our own hands, pretty much.  But with this monster virus, there is NO excuse for doctors being unavailable and/or not being experts in this disease.  Some gastros are very good with hep.  Some are not - but they won't tell you that.

[Naya888]

I just finished 12 weeks on Incivek 3days ago.I had most of its sides and still have incl.terrible itch on most of my body post Incivek ,however I never had any anal issues incl itch there.I hope I will not start itching there nothing would suprise me anymore.I wanted to stop so badly many times but this forum kept me going.No matter what you choose Inc or Vic you will get thru it!Just stay in touch!

[Naya888]

I am changing my gastro doctor finaly next week.I felt I was on my own the whole 12 weeks-just unbelievable .Thankfully I found you friends who answered most of my questions.

[catmagic0406]

Hi Tom.  I will do whatever Gish's team recommends.  They are the best of the best.  I'm just waiting now for them to let me know one way or another whether I'm accepted into their program.  I pray that I am.

Abldelghany - you sound like me.  I eat maybe once a day - I just snack around with yogurt and stuff ~ bread and butter, whatever.  So that's not a real meal, and I'm going to have a REALLY hard time eating so much on Incivek, if that's what they decide is the way to go.  Pooh and others have given all of us some incredibly helpful info. as to the sx - esp. the anal dragon fire possibility.  I have the stuff copied and pasted a lot of it into a WORD file.  I'd be happy to send it to you - e/mail me and I will.  ***@****.

[abdelghany]

I am on Incivek x 3 weeks.  I had everything pretty much PLANNED for the worst.  My insurance company would pay for a caregiver to come out and help me.  So far it has not been needed.

My hemoglobin has dropped from 11.5 to 10.4 in a week.  I started to feel the effects of it yesterday.

I have had some nasty rectal discomfort, but find with washing after every bowel movement helps tremendously.

Before the INC I ate once a day. So I have to force myself to eat 60 mg of fat a day.  I feel like I am stuffing myself.  

I hope you make a decision that is comfortable for you.  

[TeeTom]

Lots of good info in this post. I will book mark this one.

I choose incivek because of the success rate with the IL28B CC gene type. Today is the last day of week 8 and I don't regret my decision. I also liked he shorter treatment time of 24 weeks instead of a possible 48. It has been a rough ride but compared to others my sx was minimal.

What ever choice you make I wish you the best of luck and may your sides be minimal.

[Idyllic]

Ahoy Cat ♫ I am really happy this is all coming together for you. I'm not really sure why but I dragged my feet in the beginning. It literally took me close to two years to accomplish what you have managed to do in less than three months.
** Be sure to keep copies of the administrative stuff (letters, referrals, authorizations and the the like) as well as your labs.

[frijole]

Interesting document, idyllic.  I guess it is what is used to determine how to treat a patient at the VA?  I see the 42% for treatment naive but that is based on 24 patients, F4.  For F3,F4 the stats are 52% and that is only based on 42 patients. If you look at the next chart, the one for the RESPOND-2 -- previously treated patients, the stats are a little better -- F4 is 77%.  But that is still based on only 22 patients.  I still think there just were not enough cirrhotic patients tested and would not use this alone to determine which drug to treat with.
frijojle

[catmagic0406]

You bet I am, pooh.  I NEEDED to get that information.  I was starting to think I was going to be stuck with my gastro.  As long as Gish's team "accepts" me, I'm good with it.  They will be able to tell me what I should do as far as tx, and I will go along with it.  And they have a 24/7 hotline - call and speak to a real doctor - imagine that!

I'm very happy.  I know I've got a lot to deal with, but I know if anyone can get me to SVR it's that bunch.

whoooooooooo hooooooooooooo

[pooh55811]

That is great news. I bet you are heaving a sigh of relief and dancing in the streets. I am very happy for you.

[catmagic0406]

+++++++++NEWS FLASH+++++++++++

My pdoc's office called me an hour ago to tell me they just faxed TWENTY FIVE pages to Dr. Gish's office in Las Vegas - WITH Dr. XXX's referral letter on top.  By the time I see my gastro next week I'll already have an appointment with Gish. That's what he gets for going on vacation.

How cool is that?

[catmagic0406]

Thanks - some of this research makes all this a bit hard to take, BUT I will be READY.  

I have BIG NEWS next.

[Idyllic]

OK. I posted a jpg of the chart. That way you can see the breakdown of the groups and if I made an error transferring the data. I had to put it in my journal

http://www.medhelp.org/user_photos/show/278528

**Last post Cat. Sorry for all these posts**
You are doing way more research than I did and I commend you for it :)

[Idyllic]

Also you could try this site which collates Boceprevir study results in a meta analysis:

http://publications.nice.org.uk/boceprevir-for-the-treatment-of-genotype-1-chronic-hepatitis-c-ta253/the-manufacturers-submission

[pooh55811]

Zofran and Ondansetron are the same thing. Zofran is brand name and the other is generic. Zifran was for the nausea. It blocks the chemical that makes a person nauseated. I took it every 8 hours for several months.

Well, I do think you will be tired, it is the degree of fatigue that is difficult to predict. The other thing is, a lot of the side effects come and go. For instance, for a week or two in Dec. my legs felt like I was walking through 2 feet of mud or snow with lead feet. That left and never came back. The muscle fatigue in my thighs comes and goes, or at least lessens some days. The aches come and go. Most of the sides come and go or vacillate in intensity. The dry cough left when I finished Incivek. So did all of the rectal problems, even the hemorrhoids. You would never know I ever had any. The concentration is still off and I cannot read a book, but I can watch DVDs and listen to audio books. Most of these side effects are really quite tolerable. It is the ones I mentioned (rash and nausea, and anemia if you get it) that really do a number on you.

You will do just fine.