Starting treatment - any preparation tips?

[miss moneypenny]

Hi,

I am starting Peg-Intron and Ribavirin next week and wonder if any of you have any tips on what preparation could help?

I have got back up for the school run, shopping etc, but wonder if anyone had any tricks that helped them physically prepare.

Also, I am going to be on 90 (somethings???) of the peg and 800 riba, and I am around 130lbs, geno1b with low viral load - (so trying for the shorter course if clear at 4 weeks). This dosage sounds quite low compared to others, anyone have any ideas about this.

thanks in advance,  and  hope you  are  having  a  warmer day than me  ( -5 this morning!! ) xx

[NYgirl]

I'm a geno1 as well and treating 48 weeks.  I am not one of the people that go for the shorter treatment hopes - it seems as a geno 1 we NEED minimum that time.  but that's just me.

Drink a lot of water it will make many of the sides much easier on you.  Put lotion on your body every single day to help with the Riba Rash. Monitor your CBC really closely for anemia and make sure in ADVANCE your doctor will prescribe rescue drugs.

Other than that best of luck in your treatment. I am sure you will do just fine and see that it's not nearly as scary as you think beforehand.

[SnoWav]

First don't worry about it,go into it like you will be fine.As far as nygirl saying lotion every day well alot of folks don't get any rash. Charge into TX running and forget about it the best you can because your too busy living to focus on any sides from the TX.Get excersise everyday if you feel like it or not.The more you can do during TX the quicker you will recover after.Each of us only had a few short years in these bodies don't waste a minute.Good luck Aloha

[FlGuy]

Here are a few:
Select your shot day. Many people choose weekends. If unsure about using the redi-pen try to do the 1st at the doc's or with guidance. Make sure that you have a routine for the med refills. Stay hydrated. Be as active as you can without wearing out. Rest when you need. Stay on your med schedule. Decide what OTC meds you will use, if needed (ie tylenol). Decide, in advance, what you'll tell people what you're up to (I have HCV or I have a blood disorder for which I'm being treated).  Ask your family in advance for forgiveness - I was a cranky sob. Pamper yourself before TX and give yourself treats during tx. To counter any lack of concentration deveope a system for keeping track of stuff (kids schedules, school events, appts). Whenever you are able, get up, get out, get moving. Pick up a hobby.
Good luck.

[vegas777]

coug - you're on the home stretch, not too much longer to go...I think you have made some very wise, educated decisions on your course of tx....

dyce - I love that area, great shopping there!  

[beamishboy]

already got all the best advice,but here's my 2 cents worth(doublepenny?)--tell family& loved ones,you will want sum support group in place;consider Anti-depressants,the meds messed w/ my state of mind(and i hope you don't hav this problem,but it does seem to affect 50% )....keep posting,this forum can be invaluable-misery luvs company! and sign up for netflix-indulge yurself in a movie marathon of epic proportions-comic relief works wonders for me,laughter is a great distraction..finally,don't sweat it:the med apprehension is that,you will conquer this virus,like falling off a log-hopefully more than 2 -GOOD LUCK

[GoofyDad]

Sorry, missed your post below.

Just to be clear, my issue with you has nothing to do with your style, grammar, or spelling. H*ll, even your pomp, arrogance and delusions of grandeur are kinda fun, in their own special way. My issue lies in your being a liar and plagiarizer who unabashedly distorts and misrepresents facts while distributing misinformation to a community of people who are trying to deal with the consequences of battling life threatening illness.

Hope that clears things up. Have a great day, and be sure to say Hi to the Queen!  

[GoofyDad]

Hi Veg. Sounds like you had a great meeting. Kinnda a bummer about her take on the odds drop at 60, though, huh?

Yesterday we were discussing how the agressiveness in treatment should correlate to the level of damage in the liver. With your relatively healthy liver, I think you're smart not to take too agressive a stance.

You'll feel great getting into shape going into tx. Starting tx, I was in better shape than I had been in a good while - and I think that's helped me a good bit.

Don't forget to work on the head game - that's half of it. The pre-tx anxiety was the worst for me.

[HepCinLA]

Here's some things I found helpful...

1) Stock up on OTC remedies (vitamin E oil, stuff for nausea, Tylenol, etc) before you begin treatment.  That way you won't have to worry about running to get something when you're feeling really ill.
2) Pace yourself.  I am also a 1B with a low viral load and minimal damage and found the sides to be very minimal.  There are some days when you will feel great.  You'll have a tendancy to want to run around and get a lot accomplished (esp. if you have kids).  On those days, you may not drink enough or maybe take on too much which will leave you feeling generally more tired the next day.  So try to get as much done when you can but just do things at a relaxed pace.
3) I take a liquid vitamin B complex supplement on those days I feel more fatigued.  This seems to do the trick for me.  My fatigue is worse around that time of the month and having a little extra vitamin B really helps with my energy level.
4) Stock up on Gatorade b/c by week 2 or 3 you'll start to tire of the plain taste water.
5) Eat balanced meals.  

Hope that helps.

[vegas777]

FL Guy - you said in the post above

"To counter any lack of concentration deveope a system for keeping track of stuff (kids schedules, school events, appts)."

YIKES!!!!

Does that mean I will forget to feed my cats????? Holy Macaroni!!!

Susan - I just read your threads about your horse...I have to say I am sitting here in tears...What a sorrowfull day that was for you and you're family, not to mention the other horse!   I am such an animal lover I can feel your pain...I must say, with all my sincerity, I am sorry....

But! The goats were a wise choice and sound like they are already bringing much joy to all -

*dip*

[Forseegood]

yeah, what about my "head game"???? I'm half insane now, I shudder to think what I'll be like on that stuff! Oh well, I got pals like you to make me laugh on the bad days...and a Dorian Grey pic of me in the closet....

[anise]

Miss money penny, I have also decided to start the treatment.  My mail order comes today and I go to the doctor friday for the first shot, (yipes).  

Everyone, thanks for all of your advice.  I realize my apprehension might be worse than the actual treatment, hopefully :)  I didn't lose all of the weight that I wanted, but my doctor, etc. told me that it is a small percentage of the cure rate being overweight.  

Thanks again for all of the good reading I have had here for years.

[Forseegood]

Sorry I'm soooo spaced this morning! anyway, just wanted to tell you please let us know of your progress, many people are here watching out for ya!

[vegas777]

did your biopsy show fatty liver?

[vegas777]

I thought about you yesterday when we were discussing anemia, got a question for ya -

how low did he let you go before he intervened with the rescue drugs? and how much riba are you on?

*dippers*

[FlGuy]

Veg: The cats will make sure that you don't ignore them.  My problem was losing track of the kids. We have 2 yorkies. During TX they were always with me - animal empathy or sympathy.  People had the good sense to a void me.
Foresee: Dorian Grey in reverse. You'll look older, the picture will get younger.

[vegas777]

Hi Angie, hope you're doing well....

Someone asked me today what I would do if my hair fell out while I was on treatment...I thought about that for a few minutes and then grinned an evil veggie dip grin -

A WIG!!!  

The fun you can have with different hair is endless - You live in Hollywood, you could probably get em real cheap there...

But if I were you and worried about my appearance, with all that long beautiful hair you have, cut if off before you start...Give it to cancer association and soemone else can get the benefit of it, or have a wig made for yourself!

I may shave my head!!!  heck it's only hair, it'll grow back...

They have a big fund raiser here called cops for cancer, you get people to sponsor you for shaving your head!!!

*veggie the bald dip*  heheheheehe

[FlGuy]

When you get the meds read the instructions for storage - the IFN will likely require refrigeration.

[nyhepc]

i tried to respond to some posts yesterday, but couldn't remember my password....had to ask, lol.
am 2b, treating 17 weeks overall, 11 of those on full dose, my 24 weeks started 11 weeks ago. have had anemia problems...take neupogen and procrit. my first attempt at tx lasted 4 weeks, second lasted 1 week, this is third attempt.
was reading jim's and coug's exchange about continuing or stopping treatment. i have much respect and sometimes am in awe of those who need to treat for 48,52, 60 wks...1 full course..or 2 or 3. you have great mental strength.
but, i'm with coug...after this 24 weeks, i'm done, regardless of outcome. i guess i can't deal with tx and life's other bumps in the road all at the same time. a couple events in past few weeks...my pregnant daughter had abnormal ultrasound (just cleared by doc yesterday..is ok...whew!!), have had 2 trees fall thru my house during windstorm, dad has been in hospital. i guess my point is, life happens regardless of how we feel today.. is hard enough to handle normal bumps, without having to do it on these meds. and big QOL issues, i am so tired of being sick and tired.
having said that, this treatment has made me a stronger person. if i can handle these meds on a daily basis, no tree( or 2) is going to get the best of me!!!
warmest wishes to all from cold NY

lorrie

[miss moneypenny]

thanks for all the replies - I knew I could rely on you for some good advice:

nygirl - thanks for your advice, afraid that we don't get prescribed the rescue drugs in the uk :-( So hoping I am one of the lucky ones who don't get anaemic. (as if !!)

snowav - thanks for that, I love your positive attitude, I am positive at the moment, not exactly running but a fairly enthusiastic trot! Hope I can keep it up during tx.

FLguy -  I am doing my shot on a friday in hopes I am ok by monday, my hep nurse has me in her office for the first 2 shots, guess I will be an apprentice jabber until the third week! I don't know what Tylenol is - it could be what we call paracetamol in the UK
- anyone know? I could warn my family, but as i am already a cranky sob I doubt they will notice!!!!

beamishboy - good idea to get some good dvd's, I love movies, re the anti d's - my gp has put me on a "mickey mouse" dose which he says should be ok and will help my migraines too

HepCinLA - It is so reassuring to here minimal sides from someone with the same numbers (and letters), I will look out for some of the vitamin b you suggested, it's funny yoyu mention time of month etc as I talked to my nurse about this today, and she has suggested I ask doc for something to reduce blood loss to ward off anaemia.

What is gatorade?????

anise - good luck on friday, i will be just a week behind you so we should be able to compare notes

thanks again all - I'll let you know how it goes xx

[Forseegood]

wow Veg, as vain as I am, I'd have a full on heart attack if I cut my hair off now, I can better deal if it falls out little by little I think...and yeah...there are some rockin' wig places, there's a few places I know that deal with the studios for actresses, guys too, etc. There is a contraption where you fasten this fall like thing around the back of your head so you can add hair...or maybe I'll go so bad sh##t crazy on the stuff that'll I'll slap on a Tina Fright Wig, make all these peeps move to the other side of the street when I'm walkin my pooch!

[Forseegood]

Just meant to say that I hope your sides are better soon, youre nearig the finish line, way to go...

[andyarundel]

As it seems you take great pride with your Bottom Feeder skills, maybe you find a forum dedicated to flaming, as you consistently post the same meaningless dribble. You act like a 7th grade girl with your "witty" retorts. Some people take great vanity in being imposters, insulters, flamers, and other idiotic scum of the earth on the internet. These people are usually fat 30-year-olds who still live in Mommy and Daddy's basement eating their weight in Ho-Hos.

If you choose to stand behind this comment(My issue lies in your being a liar and plagiarizer who unabashedly distorts and misrepresents facts while distributing misinformation to a community of people who are trying to deal with the consequences of battling life threatening illness) you a an even bigger fool than I thought. I not doubt do more in 30 minutes for the community I am proud to represent than you and your whiney ass will ever do in a lifetime. That you can take to the bank, junior. You and those like you are the prime reason the HCV community is as one of your buddy's aptly described it, is without empathy and under funded.

Please by all means stuff whatever you feel is necessary down your gullet, as so you can proudly proclaim to all those who seek your wisdom, Go ahead, Proclaim to all.

[Forseegood]

Vertex wont be available for 7 years, even though it's been fast tracked and now going into wider trials? you know this for sure right? or more likely?? the only reason I'm posting is for people to really consider the source, and to really consider anyone that would throw around numbers like this...

[vegas777]

I did a whole big rambling thread on my vist to the Hep Doc in Toronto yesterday, it's down a few posts...It may be of interest to you to read...

Dr. Jenny Heathcote told me yesterday that Vertex 950 will NOT be available for 5-7 years and most likely the later, she went into all the things about pahses, and FDA and fast tracking etc, etc...Based on what she sasid about the availability of the new PI's is the MAIN reason I have decided to treat...

Beth