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

[Forseegood]

no I agree with your assessment about your treating now...I've crunched those numbers myself, and yeah, I'm no spring chicken either...but I still would not treat now if I didn't have symptoms given my labs and biopsy...

it's okay for your people to think this..and it's okay for me not to agree with them, ha ha!

We'll be okay Veg...just take it as it comes and don't program it too much...I'm going to have this tattoed on my forehead docha know, I think youre more optomistic than I am which will serve you well...and now, I've shot my mouth off enough this morning...even for me...

[vegas777]

ahhhh thank you so much for your kind words...I said it before and I'll say it again, you're one of the nicest people on here...never a bad word and always in good spirits...you have a good soul Debby *hug*

Beth

[vegas777]

in your opinion, if you had started the folic acid prior to the down turn in your hmg would it have made a substantial differnce and perhaps prevent the use of boosters?  the reason I am asking I am not so sure I buy this theory of the use of folic acid from my hep doc, I am definately "gun shy" after the feaking nightmare with the herbs, but it's more attractive to me than cell boosters, did they tell you the risk of the procrit upfront?...

[NYgirl]

Best of luck to both of you on your treatment.  Once you get passed the initial "shock and awe" type thing...you will find it's doable.  Otherwise NONE Of us would be here would we?  ;-)

Anise - you'll be just fine. Plus chances ARE that you will lose a bucket of weight on tx anyway (I sure hope so since you want to!) Right now ... I'm tired of hearing skinny jokes.

My doctor was going to start me at 800Riba - and I was about 130 or so when I started (more towards 125 maybe).  Still that is the weight based dosage. I had to beg for the 1000 which is the mfg. recommended dosage.

One little note: make sure you order/pick up your new medications at least a week before you actually need them in case of insurance problem or mailing problem or whatever.  Twice I've almost not gotten mine in time. Talk about going crazy!

Veg
"Dr. Jenny Heathcote told me yesterday that Vertex 950 will NOT be available for 5-7 years"

My doctors have told me the same thing - that it is more likely the 7 and later.  I think hype surrounding investment and stuff could easily make it appear in the news and press releases as if it would be much sooner...but I tend to think whatever their press is saying it's double that at least.  Marketing isn't necessarily the TRUTH = it's what they want to sell unfortunately.

There are drugs that work right now (for some).  They ARE worth trying first. It's nice to want to wait for the newer EASIER (hopefully) and better drugs - but with a 50% cure rate for Geno 1s and an 80% for Geno2s...it seems a worthwhile bet to me to try that first.

I am so relieved that you are getting on the crazy bus. I can't tell you.  I was so worried about you - your health hasn't been good and well...I just want you to be BETTER so much. I'm very happy that now you have a chance at SVR and are going to DO IT!  You've already won..I know it.

[GoofyDad]

Don't think I saw this in the reponses. Start early with the moisturizing lotion, and keep at it. Staying ahead of the curve on that one will help.

Best wishes. Waiting and the pre-tx anxiety is rough. Once the train finally leaves the station, it's not so bad, I don't think.

[Forseegood]

Hey great list! will keep all this in mind, especially about the yoga, hope I can still do that, cept I might nix the Power Yoga, just a little Hatha...early in the morning...

Goof: like Kalio and Friole and some others, I'm hoping that on some fronts I'll actually feel better...at least I'm hoping, more shall be revealed, just hope you have a few life jackets left on that river...

[vegas777]

she doesn't even know I decided to tx..LOL  I made the decision on my way home from TO after talking to my husband, so your theory about her wanting me to treat is way off base...She said I could wait another 4 years and get another bx and see where I stand then, but my common sense tells me that if I wait another 4 years I am then going to be 58, now given the odds of responding going dramatically down once the age of 60 is reached, I can't wait that long...And, compounded with that, if I waited the 4 more years, and my liver progressed I am facing a double whammy, age and damage...And make it even worse case scenario, I am now 58, worse liver damage, and NO new drugs, I am basically screwed...I am now facing a life threatening illness and going into the converntional treatment of a drug combo that can do potential long lasting damage and only a possible 25% chance of clearing the virus!  My name is vegas but I don't want to take that gamble on my life...

They (the clinic in TO) have been told they will be part of the Phase III Vertex trials and that it will NOT happen for another 2 years...Now, if the trial goes into effect in 2 years, can it be possible to have the drug hit the market in 3 years?  I honestly do not think so...But, I may be wrong, and I hope I am..No one has been more of a watch and wait advocate than me, but sometimes we have to put our fears aside and rely on the numbers, nunbers never lie, kalio will agree to that being an accountant, and my numbers say I can enjoy a 60% chance now, or a 25% chance later, which would you pick?

You can afford to wait, you're not as old as I am....

*dippers*

[Oreos]

Congrats on making the decision to treat.  Probably the hardest part of all.  I'm a year and 3 mos post tx, former 1A and still undetectable.  Here are some things that worked for me:

1. Drink tons of water.
2. Get a humidifier.
3. Put together a contact/support list with all your friends, family and Dr's info.  
4. Keep a file with all your lab reports, insurance stuff, etc.
5. Monitor your sides closely and work with your GI to manage them.
6. Treat yourself to massages or whatever type of pampering you like.  
7. Humor, humor, humor.  
8. Light exercise like yoga classes, walking and lots of stretching.
9. Post here frequently so we can know how you're doing.
10. Most of all, keep your eye on the prize.

I see you will be starting on peg-intron.  I found that Pegasys was easier to use and had far fewer sides.  You may want to check into it.  

Best of luck to you and keep us posted : )

Gail

[GoofyDad]

Forsey: You are going to do just great. Your teeth are going to be fine. Your hair is going to be fine. Your going to be fine. And your going to put this behind you. C'mon down to the river baby!

Veggie: I got my approval for procrit at 11, and was using it at 10.5. That held for a while then I started a downslope that triggered an upped dossage of procrit. The drop turned around in the low 7's. I think 7.0 was the bottom, but I can't seem to dig up that week's paper. I'm taking 1,200 riba at 165 lbs. I also started high Folic Acid not long before the turn-around.

[2irish]

Good Luck, it sounds as though you are really getting prepared.  Tylenol is acetaminophen...so whatever you have that contains that would do.  Also, your equivalent to gatorade is what you call lucozade.  Again, good luck & you will do fine.  I promise you the anxiety beforehand is worse than anything else on tx!!! England Forever!

[Forseegood]

Hi, I don't want to besmirch anyone's doc, or anyone's opinion  for that matter, because in the end, they are all just opinions...but I go to a pretty well respected hep doc myself that sits on all these boards and does all these consultations with different drug co's...and he told me that there is really no one that can predict when these meds will become available on market, because there are too many variables beforehand that haven't happened yet, and no one can see into the future...

he said the fact that it did get fast tracked and has done so well so far does bode well, why wouldn't it?, he said if anyone was going to squeeze his head for an estimate, based on certain factors to continue to go well, and they have learned from past drug trial mistakes in formulations......he said 3 more years....that doesn't take into account that the phase III trials will be here way before this happens...so to me it's like all things re Hep C, until this stuff actually happens, it's all speculation and your doc is way, way on the conservative side of things which is her perogative, she also prob wants you to treat now which is understandable...

But there are so many, many grey areas with this disease and these treatments, future and present, and if all the docs and researchers are so conflicted about it themselves, with so many opinions....as is quite evident, all we can do is study as much as we can, see all the different opinions, then decide for ourselves which are the better plans and theories...

my only problem is (and I don't include you in this Veg, because I know you and I don't think this is your case) is that some people will form grudges and grievances with certain people,  and forget the objectivity or principal of a sitution in order to "win" arguments for ego gratification....meanwhile there are people who are non-responders and relapsers who need objective info on these new drugs...as much as there is...and I just wanted to point out that 7 years down the line is a very, very conservative estimate, to say the least, I haven't heard that from anyone I've spoken too...respectfully, to your doc and anyone else who feels this is more the case....

[Mister beagle bailey]

Hi,

Glad you decided to treat and all the advice given to you is right on the money.  My only question is why your only getting 90 (?) of the Peg.  I'm geno type 2B, viral load before tx was 318,000 and my Dr. has me on 1200 of Peg and 800 Riba.  My treatment will be for 24 weeks and Sunday will be shot #5 with 19 to go.  I would ask the Dr. why only 90 on Peg, you need to ask questions, it's very important to know all about our treatment and be very involved in all that goes on.  I have learned that from all on this forum and it really helps to understand all that is going on with your body.

Good luck and you will make it.  All on this forum are of great help, much knowledge, and they really care. We are all here for you.

  The Beagle

[cuteus]

your riba seems a little too low for a geno 1.  I was given 1000mg for my 135lb wt. There is a formula somewhere. I never memorized it. Double check the dose since riba is most important in the beg of tx.

to all just starting the trek; best luck and zero sides to you all

[andyarundel]

In my however so humble opinion, a FDA Fast Track designation means little as it deals with marketing claims. What would be nice is if Vertex had applied for a  FDA Priority Review and Accelerated Approval, which

[FlGuy]

With your name, should have assumed UK.  In the US popular over the counter (no perscription) include:
Tylenol - acetaminophen
Advil - ibuprophen
Aleve - naproxen
aspirin - aspirin
Not sure which one yours maps to. For shot #2. try to do it yourself with the med person a spectator.  You'll get good at it in no time. Make sure they teach you the best target areas so you can rotate.

[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

[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...

[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]

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

[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!

[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

[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

[FlGuy]

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

[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