should i do treatment in a clinical study

[grateful4ever]

I have  genotype 1 and stage 2 fibrosis cannot afford meds and been offered to participate in a clinical study I know noone who has gone through this Been reading alot about alternative treatment and am really confused about the drug it all sounds so scary How will i feel  ? What to expect? just found this site and have not read  much yet but hopefully it helps. Glad i am not alone. Alternative treatmant or Drugs

[grateful4ever]

Thanks on it right now

[jmjm530]

At a minimum, you want to know the name of the trial and the name of all the drugs used. I would also assume they have some sort of consent document that lists all of the trial specifics. You should also know that the drug companies have financial assistance programs for the medications, so you may have other alternatives.

[grateful4ever]

To be honest I do not know much, except it is through Tacoma Digestive Disease & Research Center center. I will call 2day, what questions do I need to ask? I feel a little overwhelmed at this point. My boyfriend does not even want to discuss this, and after reading some of the effects I told him it might not be pretty and if he could not hang for the duration now is the time to exit. my doctor said treatment will be 1 yr. I have insurance but only pays 60% of meds. What are my options other than that. How will treatment effect my work performance?  I need to keep my job Thankyou all for responding I have been avoiding reality and so glad to have you as I feel like a lost girl right now. When I was 26( Now 53) I had Non A non Bhep which as we know now is C no doctor until last jan ever said anything and since then  this is where I am.I suppose if more had been known then I would be better off, but then again woulda ,coulda shoulda back to reality.  Still feel real healthy other than aches and pains I  attributted to aging.

[nygirl7]

Ditto to the guys above.  It's impossible to advise you on the situation without really knowing which trial and all of the pertinent details.  

However that said it is a good alternative for someone who has no insurance. If you can let us all know it would be easier to let you know the truth about the situation.

Fortunately there is a cure (i have been virus clear almost two years) but the treatment isn't kind and gentle - however it's doable, even though it's not so easy.

At stage 2 as a geno 1 it IS good that you are looking into a way to get rid of this disease - so keep it up.

[Isobella]

It is very true--all trials are definately not created equal.  You really want to do some research before deciding.  Please post info on the trial and I am sure that you will get some good feedback.

I am currently in in the Vertex phase III for tx naive and am very pleased.  Finances were definately a part of my decision, but more importantly the fact that this new drug shows great promise.  They will be running another in the spring with all arms receiving triple therapy.  Could be worth looking into.

Alternative therapy is no cure, so SOC is the way to go.  Remember-not all people have all the side effects we read about.  

So, let's hear about that trial........

Best of luck to you and please keep us posted.

Isobella

[Trish77]

Not all trials are created equal and there isn't enough information for us to be able to offer even an opinion on your trial.  I understand the dilemma with regards to being able to pay for drugs however many people here have been able to get assistance through programs the drug companies themselves have set up and if you ask about that, people will be only too happy to tell you about that.  

As for the trial you are offered....if you'd like to post which trial, you will get plenty of feedback.  I'm in a trial myself currently and there are definitely pros and cons that people will share with you and in the end, the decision is yours based on your OWN personal factors.  This can be explained better in relation to you once there is more information on your trial posted.  With regards to trials, the things that get taken into account is the past history of the drug in trial to date, the side effects, the risks to you based on the various arms of the trial and the requirements and restrictions of the trial and whatever other factors that come into play in relation to your particular trial.

Alternative treatments....there isn't any alternative treatments that have been found to be a CURE yet .. a help, yes.  A cure... not yet.  The drugs we have is our cure at the moment.

If you'd like to post more information on your trial, not only are we all interested in treatments that are coming along but we also want the best for each other in this fight to cure Hep C.

Good luck and hope that helped some.

Trish

[Marcia2202]

Welcome to the forum. Yes it can be quite scary in the beginning, but please don't despair, as there is a cure. Unfortunately alternative treatment cannot eradicate the virus. If I was you, I would definitely participate in the trial. There are several ppl here on the forum who have gone through or are currently in a trial. Please let us know which trial you have been offered to participate in, so they can give you a beter response.

I will be starting treatment next week and I thank God every day that I have found this forum. I have gotten so much information, compassion and love from people here, that I'm not in the slightest scared to start treatment. So you have definitely come to the best place available. It will be a little confusing in the beginning, but you will get the hang of things pretty soon.

That's all for now.

Marcia