What does your husband think? Yesterday we had an excellent post about longterm after effects. We frequently talk about sides and how to survive them. We don't talk often about studies such as this one.

You have already weighed the outcomes concerning tx. People who participate in studies help drs/pharmaceutical companies fine tune the meds.

This is a dilemma that only you and your husband can decide. Should you relapse after 24 weeks on the study, what then? Would you be angry or simply do tx again?

As ya know sis, I gave ya a personal reply yesterday, ASK,ASK,ASK, Your Doc everything, I know my last treatment I did 1400mg's of riba too! As for me Id rather just do your treatment normally and without any interferrence from any study type trip ! ya dont need the extra bullshit while on treatment sister! But thats my opinion as a friend, Im no Doctor.Thats for sure? LOL,LOL

I think I would find it very stressful to be in a study, but some might find it very comfortable in doing so, I would not want to be in one and not be a non- responder that is for sure, how crushing that would be, But I agree with Tatt, Ask your Dr every question you can come up with, And don't do it if you don't feel comfortable with it, hugs, D*F*K

Riba is very hard on your body. I take 600 and Ronald takes 800mg...We find that level tough...

Do you have to work? Do you have household help? How much can you endure? What if you change your mind? Can you revert to a regular tx regime?

Thanks everyone for answering...

Just to let you know I am a very fortunate gal...
I will not have to take on any contracts unless I feel I want to so my workload can be zero.
My hubby and 3 daughters are
very helpful around the house. They do alot of cooking and cleaning etc.
Bless their little hearts!

My husband thinks Hmmmmm actuall he's till thinking.
There is so much to take into considersation. Extra traveling (we are 3 hours away from the specialist doctors and nurses.)Extra bucks for traveling is also a concern. Time you have to give up to be involved in the study is another thing.What about if I want to quit the study at 24 weeks if I didn't want to be cut of the meds and decided I wanted the regualr 48 week treatment(that is if I was placed in that very quick responder group that just gets treated for 24 weeks) WELL....I did find out from my nurse just now that I could just quit the study at that point and switch to a 48 week treatment so that is a good thing.

I've got up until April 9 to make my dission so I guess I/we (my husbands thoughts are very important of course)will just tink this all out to the best of our ability. I'm going to take into considerstion all feedback I gain from DS as your opinion and expierence is important to me as well!

I think Tatt is right with the ask, ask, ask...point
and I have been bombarding my nurse with tons of questions. I think you probably all see I'm one of those kind of gals who just keeps on asking(big smiles) thats how ya find things out in my opinion.

right now I'm comfortable with doing treatment for as long as nessasary to cure this stupid hep c that has came into my life and turned it upside down...but after being on treatment especially if I suffer from bad side effect that opinion might change.

Anyways I do want to thank you all for responding. I appreciate it very very much. Hope your all doing o.k. today
Big Hugs,
Scaredrabbit



Hmmmmmm

Completing 50% of tx will give a person a 50% chance of SVR. 60% will give them 60%, etc. I do know people who stopped halfway through, stopped due to sides, and they are still virus free. But for myself, I'd rather do it right the first time and not take the chance. 90% of treatment is usually pretty effective but if a person's going to complete 90%, then why not 100%. P.S. I thought they already calculated a person's RIBA dose based on weight? I weigh 215 lbs and take a total of 6 pills a day for a total of 1200mg daily. Either way it's going to do its job of lowering your white blood cells so the interferon can really go in there and do a bang up job on the virus without your immune system getting in the way.

Tatt has a point, however, I wonder if you would get more individualized treatment on this study, if they will monitor you more closely. The fact that you weigh 90 kgs is also a consideration. The more you weigh, unless it is muscle, will affect your response and side effects. My friend here cannot begin treatment until she loses weight, she weighs quite a bit. Maybe close to what you weigh. But she is only 5'2" and about 82kgs or 180 pounds for you who measure in pounds. 90 kgs is 198 pounds. 1 kg = approx 2.2 pounds.

Ask ask ask, great advice! It's your life! Don't let them forget it!

I take 1000mg of rib a day. I am doing the pegysas and neupogen injections weekly.I am undetectable after 12 weeks and no sign of the dragon in my blood. I think the peg and riba combo is the newest thing..(?) Really dont know. Good luck in whatever you do. Im here!

I would consider the time committment. If you do the tx on your own, you only have to go in for bloodwork every 4 weeks or so. Driving the extra miles may really be tiring. Although it is nice to know you may help others by being in this study, I think the extra time committment should be considered. Especially since you have family to take care of. You will be taxed as it is, with out adding on the extra time travel and extra check ups etc. Myself, I have no kids at home, and I might consider it, but if I had kids at home, I would concentrated on feeling the best you can while on tx and not add any extra time consuming things to your plate. You will need more rest then usual...and with kids and a husband to take care of, I would want to save my energy for them and my home, vs spending some of my good energy driving back and forth and doing all that is required to participate. Anyway-just one more view point to consider. I will be praying for God's peace for you and your husband as you are considering this study.
Take Care,
5starr
P.S. I weigh more then 90kgs-no one told me I had to lose weight. I am on 1200mg Ribi and .5 peg-interferon. VRL 245ML Genotype 2.

from being in treatment six weeks now Id say no. I think you need to get yourself ready physically spirtually etc etc...why add more stuff.....I dont know though you have some little heart there lady always looking to help...pray about it..ask your Dr. love you

I have read about a similar study. Try clincaltrials.com or just google. Be well informed as you decide.
Beth

oops. It is clinicaltrials.gov

Personally I responded quickly. At 6 weeks it showed neg. for hep-c and did the tx for 24 weeks. i was asked to do the study at UC Davis, Ca. but because I was depressed they declined. I think it's a good idea. They need more research on this. I'd go for it. What could it hurt. If anything I think it's a positive thing. It's so pevelent these days. I'll back your decision whatever it is sweetie! Good luck and keep us posted.

I have to agree with 5starr about the time commitment thing. I am a 28 year old mother of a 5 year old daughter and a 2 year old son and am on about week 22 of my treatment. I find it rather difficult to manage treatment and my children, so I tend to spare all the energy I can just to be able to care for my children. My tx dr is 45 minutes away, and I begrudge having to go there every month because the car ride during the nausia is horrible! Especially since I make my hubby drive (because having to drive would really make me sick) which means I also have my kids in toe during the trip 70% of the time. And sitting and waiting in the waiting room alone is exhausting and then having to answer a million questions just being a regular patient when this treatment makes concentrating so hard! I find I am extremely spent/exhausted by the time I get home, so I tend to go to my appointment on a Friday because I have no energy for about 24 hours after my appointments, and my hubby is home to care for the kids while sleep. Because let's face it, raising kids take alot of energy -raising kids while on treatment takes up ALL of your energy. The energy you use for this treatment could use up some of your "good days" or any of your extra energy you could use spending quality time with your kids. I know my kids are in seven-heaven when I have a good day and can play with them or go out with them -you could be taking that away from yours doing a study. Something really worth thinking about. I'm all about helping with furthering the studies of this dragon, but I also see how extremly hard my treatments are on my kids and hubby too, and to me my kids come first because they are pleantly of people out there on treatment who aren't raising kids at the same time as doing this. It's really about how much you think your body will be able to handle.

And about the weight issue and the RBV, I started out weighing about 208 pounds (or 94.5 kg using Makiah's conversion formula) I take 1200 mg or RBV daily and my weekly treatment of pegasyst. I am geno-type 1b (the most stubborn of all) and I cleared the virus in just 3 weeks! 22 weeks later I have lost 28 pounds (12.72 kg) so I now weigh 180 lbs (81.8 kg) and I'm only half way done so I will be losing more weight. So I guess doing the longer treatment works out because you will lose the weight as you go and how and be in the 1200 RBV category if you think about it. And yes I cleared in 3 weeks, and I could quit right now but there is no way I want to quit after going this far just to risk to have to do it again. I want to go all of the way through and give myself the best chance I can of beating this thing -the best proven chance that is- not only for myself but for my kids as well. If you risk relapse you hurt your chances of beating this thing, and you really have to think if that's worth the risk for you and your children. At least being a fellow mom with kids at home and being on the actual treatment right now, that is my thoughts and how this treatment has made me focus. I even had the chance to put off treatment since I have no liver damage but I didn't want to, I wanted to go after this thing while I had my best chance of beating it regardless nowing it would be a struggle with my kids being so young. I want to see my kids grow up, see them get married, I want to see my grandbabies born. If I were older and had already been through all of this with my children, than yah I would do the study, but I got this thing young and gonna beat it young so my kids have their mommy for a very long time. Is that something you really want to mess risking with? Just a thought.

I don't envy your decision because before I started treatment, if I'd been asked this question, I probably would have been as confused what to do as you. Let's face it you won't know how YOU will feel on treatment until you start because everyone feels different. Much love and luck to you, sweetie!

wow this is great to see all these posts. Thank you everyone...your feedback is very important to me.

I did want to mention my girls ages 17, 14 and 11. My job of taking care of them has gotten much easier over the last few years. They are great kids who are doing real well in school and have great friends. Not in drinking or partying (how I lucked out on this is beyond me...but I sure am grateful)
My hubby is only 41 and is in great health...he's a super guy who will do laundry,cook,clean whatever! I worked away from home a fair bit over the past few years and everyone had to pull together while i was out of town so they are used to being a team and getting whatever needs to be done done....YA I'M ONE HECK OF A LUCKY WOMAN....I KNOW!
Anyways one thing I know forsure is I'm not going to have to worry about doing alot of work if I get real bad side effects. My family will take care of me and the house! I am so fortunate.

The one reason I'm thinking about doing this study is that here in Alberta Canada the Blue Cross Insurance company will only pay for your treatment with these meds once. If you are a non responder you will have to pay yourself nextime if you want to try again. If I go on this study it will give me the opertunity two do the treatment twice without paying...I'm worried about relapsing and haing to pay for the second round of treatment which is like 30,000.oo dollars (OUCH) If I relapsed after being on the study I would be allowed to do a 48 week treatment session at no charge....hmmm