Victrelis

[rockymoe]

i am on 5th day of triple treatment. I find the Bocep intensifies all theSOC sides and I have been very nauseaous and the taste in the mouth *****. I find if I take them with a few Jr mints it helps. Right now the Halloween candy is out so they have those little boxes out. i saw someone put on her toast! You won't catch me doing that, i find it hard enough to get a piece of toast down with cinnamon butter on it. eating is not something i enjoy right now everything taste the same which is no taste☺

[U2GF]

I'm going to start taking the Bocep on Monday along with the Interf & Riba. This is my third therapy but first with Bocep. Don't know what "SOC" stands for but not sure I want to. I would like to compare notes with you as we  progress on our treatments. Open to help.

[rockymoe]

SOC means standard of care and somewhere on this forum there is a list of what all the abbrevations mean. I would love to compare notes with you.

[frijole]

I will take my first VIctrelis this Friday the 23rd.  What you are saying sounds like what I  have been expecting.  I will get back with you this Friday and we can commisserate.
frijole

this is round 2 for me

[frijole]

U2GF -- are you sure you are taking the Victrelis?  You would start with a 4 week lead in of interferon and ribavirin and then start taking Victrelis in week 5.  Maybe you are going to take the Incevik. With that PI, you take all three up front for the first 12 weeks, then the interferon and ribavirn for 12 or more weeks, depending on your response.

My first VIC was yesterday.  I have to say the timing  is going to be challenging.  The 6 and 2 doses worked out.  I looked pretty funny sitting at my desk, snack in one hand and phone with alarm  in the other so I could turn it off as soon as it rang.  However, I can't stay up till 10 so I will have to get up and take my VIC when the alarm goes off.  I was sure I would be up at 6 this morning and did not walk up until 6:20.  The VIC is "interesting."  About 20 minutes after the dose I have to go to the bathroom, if you get my jist. I  haven't seen any other side effects -- yet.

frijole

[evangelin]

Thank you very much for the previews.  Joe is just finishing his first week of the lead in and has been pretty unwell, just like our past experiences.  Hopefully he will level out here a little .
He took a walk with me yesterday and walked very slowly and is already getting that out of breath sound from Riba.  His Hgb is low to begin with, but I expected it to take longer than a week to start affecting him.  Guess not.  I wish we could induce a coma and wake him when it is over.  :>)   The phenergan has been very helpful though.  I have been cutting a 25 mg. capsule in half and giving him one at bedtime.  It knocks out the nausea and puts him to sleep.  They approved 25 mg but if looks like half will do the job for now. He had used compazine last time but Phenergan appears to work better for his nausea.  The sleep is a plus. The compazine also caused URQ pain and the half of Phenergan has not so far so hopefully is less agitating to the liver.
Glad you are able to work and TX undercover.  You'd think they'd have some clues by now why it makes some people so much sicker than others.  The big fevers always come with his first few shots but it will get better down the road.  The Victrelis is the unknown factor so I really appreciate hearing your updates.
Take care,
Ev

[evangelin]

I'm pretty sure I can interest my husband in trying your Junior Mints idea...yum!  I better test them to make sure they are OK first.  :>)
Ev

[spectda]

I had a very different experience when the Victrelis was added. I had virtually no immediate change in how I felt except the taste was obviously terrible. After a couple of weeks I had really rough intestinal pain which lasted for another couple of weeks and stopped. HGB, ANC and Platelets all went to hell, but that all started with the lead-in. Those particular blood values were all normal prior to tx.
-Dave

[sandysf]

On timing, my understanding is every 8 hours.. so it doesn't HAVE to be at 6 am.   I wake up every night to go to the bathroom and I like to sleep in late, so my schedule is   11:30 am (with lunch),  7:30 pm (with dinner) and then 3:30 am.. ( i set a bedside alarm, but normally wake up before it anyway cause I can never sleep the entire night without going to bathroom)  So it works perfectly for me.   I found the bad taste and dry mouth dissipated after about one month of Vic.    HGB tanked to 9.2 by week 6 of Vic and at week 14 of tx, my riba was reduced from 1000 to 800 for two weeks.  It helped immensely.  

[sandysf]

Oh.. the other side effect that has become increasingly worse, is hair loss.  I have been losing it at a pretty steady rate since the first few weeks, but the past two weeks has been much worse.  I had a pretty thick head of hair, good thing.. because I have lost at least half of it.  I see why people just say to heck with it and shave their heads.. I am constantly shedding and hair is all over my house!  On the up side, my eyelashes are nearly twice as long.. go figure!    

[rockymoe]

So how are you doing? I am having shortness of breath and muscle fatigue.I have a two story home and by the time I get to the top I'm sucking pond water. Went for labs today checking to see if I've crashed or not

[rockymoe]

I have a question for you? How is it for you being the spouse of someone on treatment? As the one on treatment it's like you have to live it to know it. I know I am like a different person when I'm on treatment and just wondering how it feels with the shoes on the other feet. My husband tries very hard to over look things but I know it gets to him,

[brianmo]

Wow, sounds like I have Fun stuff to look forward to. Interesting that the bad taste in mouth seems to be a SE when the Vic starts but I have had it since my first injection Thursday night. It wasn't more then 30 secs after the shot and my mouth tasted like metal. Everything else does also. In four days I have lost a half lb. I been doing peppermints and cinnamon gum. It helps. Besides for that I feel fine. A little hyper, almost like to much energy but I have been assured this will dissipate.

U2GF....over to the right of page on bottom Is a list of most viewed pages. In that list is a list of acronyms.

Mo
Mo

[rockymoe]

I am also noticing the hair loss. I have thin fine hair and really can't afford to lose it. i told my hairdresser no matter how hard I beg not to let me cut it. I just keep reminding myself that when tx is over and the new hair growth starts growing how thick and full it looks.

[SunShineGirlie]

I am experiencing rapid hair loss as well and I am on the Vertex drug.  My eyelashes do seem to be getting fully too! weird stuff huh!

[evangelin]

I apologize for missing your question until now.  
It is actually a little hard for me to say because I've been living it for an awfully long time now and this is TX #4.  I'm much better than I was on TX #1 and #2.  I've learned what to get worried about and what to stay calm about.  When he doesn't act right, I don't let it hurt my feelings easily because I know he goes back to being his normal self when the meds stop.  This was hard to decipher the first couple of times but I'm hoping this will be the last time we have to use our hard won TX skills.
Joe handles things better now than he did in the past too.  He is much more adapted to all the inconveniences that TX requires.  He was just kind of mad at God and people in general during the first TX.  :>(        He got over it, thank goodness.  We wouldn't face it without an antidepressant on board because we learned from TX# 1 why it was necessary. That made for some tough times.  He never needs antidepressants off TX but they are absolutely mandatory if he takes interferon.  
I am an empathetic person by nature, and I  feel his pain  acutely at times but life goes on and I've had to keep things as level as I can for our kids which have had to be a part of the TX experience too.
I have supportive family, friends and church which has helped a whole lot.  I have also met some wonderful people over the years, online.  Since HCV hasn't killed us so far, it has likely made us better people although I wouldn't recommend it as a path of self improvement.   :>)  
We have been put to the test for our vow of "In sickness or in health"  and we still love each other and just had our 29th anniversary.  I'd recently said 30 yrs on a post but I counted wrong.  :>)   Maybe we will be able to truly celebrate our 30th anniversary with Joe's SVR...now that would be too awesome for words.
Best Wishes,
Ev

[frijole]

Evangelin
Glad this thread bumped back up - I had lost it.  I am sorry Joe has had a rough start this time.  I think the VIC still would be the best choice for Joe. Hey, today is my 36th anniversary.  How time flies. My spouse is a lot more caring this treatment.  Last time he more or less ignored how I felt or was put out because he thougth treating was silly as I had no symptoms.  He is so much better this time.

Rockymo -- I am a little breathy at times but cannot say that I am anemic yet.  It is driving me nuts -- I have had 2 CBCs and liver profiles and one PCR (the lead in) and still don't know any results.  The nurse sent them to me on Monday but I don't know when I will get them.  

The VIC is okay. The thing I hate the most is eating so early and late.  I don't eat but a few bits of yogurt for the 10pm dose but still, it seems like a lot of eating.  I am just glad not to have those 20mg fat requirements.  

I really feel like the PegIntron is knocking me a lot harder than the Pegasys ever did.  I still don't get chills or fevers but sure feel achy for 2 days after the shot.  I had my 10yo granddaughter over all sunday and it wiped me out.  Had to nap when she left!

My scalp itches a  lot -- I am almost done with week 5 now and I know that is a predessessor to hair loss, but so far it hasn't happened.  I still haven't made it to the store for some Nioxin but I really did think that helped last treatment.

frijole

[rockymoe]

This is Round 8  since diagnosed in 99 for my husband and I. the clinic I go to has a full time hep c nurse which is great. she asked me about irratability and I said I've snapped at my husband a few times. She said they have seen people divorce after treatment. I said well if we have made it thru all the treatments so far this one isn't going to break us. I have to say he has been much more understanding and patient this time. This treatment has been one of the worst and I think it is because before I went from one treatment to another all with interferon and Riba included. This time I had a three year break in between, and wre are hoping that all the sx means it's working and are praying. It definately test the in sickness and in health!

[rockymoe]

they called to tell me my labs came back ok but my hgb dropped from 12 to 7 so that is why I am feeling the shortness of breath and lack of energy but was still ok. will have anther in 2 weeks and can get copies of my labs.

[sandysf]

Your HGB was 7 and they said that was OK?  I think not.  Did you talk to the doc?  7 seems dangerously low to me.. you must feel terrible?  Did they discuss procrit or a transfusion?  

[evangelin]

That all sounds very difficult.  You are due a happy ending to all this.  Your Hgb sounds like it needs immediate attention if it is 7.
I do hope it will work for you this time.
Blessings,
Ev

[evangelin]

Glad the fever/ chills aren't getting you because that would be hard to hide at work.  
Joe is doing better this week than he did last.  The nausea is under control.  Some grouchiness is occuring and we are all approaching with caution.  :>)
Hope you can keep up the cloaking device at work.  I know it must be difficult but I admire your toughness.
Best Wishes,
Ev

[cliff1961]

My Fiancee' had her HGB dropped to 9.0 and was left alone, now it has dropped to 8.3 they had given her the opportunity to have "procrit" shots weekly or a blood transfusion. Along with that they have reduced her Ribavirin from 1000mg down to 800mg.
There are advantages and disadvantages in either option you choose and these are some which i gathered from a friend who is a nurse and once suffered Hep C.


The biggest differences are, with the blood transfusion, the improvements are immediate and there is no risk for her body overproducing red blood cells and risking a spleen rupture. A blood transfusion will last usually about 4 weeks until the red blood cells wear out. The biggest worry is rejection where she'd spike a fever or contamination -which is much, much less than it was even 5 years ago. The blood is screened much more carefully now -if it were me, I'd risk it, but I understand her fear as well.


With the Procrit, it forces the bone marrow to produce red blood cells -and the results take about two weeks to begin to show improvement. The "forcing" process can cause severe bone aching (some do not have this) and the shot will continue to work for about 3-4 weeks, possibly requiring another injection in a month to 6 weeks. It can also make the bones produce too many red blood cells, causing blood clots, strokes, and spleen rupture.

Either way, neither should be take lightly. If both of the treatments work the way they are supposed to and without complications, both are excellent.

[rockymoe]

I am tired and I will be glad when my next appointment gets here. This treatment has hit me the hardest The sx's usually calm down but not this time even the zofran doesn't help the nausea. I will keep you posted when I get copies of my labs!

[can-do-man]

Sorry to hear your having a tough time, that nausea can be terrible, have you talked  to your doctor about taking Phenergan? When i was on VIC that was the only thing that worked for me..............Hang in there