Clinical trial

[Ladybug2013]

Hi all:

Yesterday I was screened for a clinical trial medication research study for Merck, I chose to participate in the study in hopes of being cured and will know if I can participate in about two weeks. I've been through 4 different insurance companies in the past year and have been denied medication over and over again because I am apparently not sick enough. I've also accumulated a very large doctors bill! So this is the best option I have right now. I'm just curious to know if anyone else here has done a clinical trial before and what was your experience like?

[beto]

Ladybug,

A big congrats on the trial.  I have read and heard great things about Mercks combo treatment.  I too was denied 3-4 time, however cirrhosis finally tipped the scale for me. The clinical trial is a god send.  I tried to get into one.  Consider yourself lucky, sit back and get cured.  We will all be waiting to hear from you how it goes.  Good luck and welcome.

[Lynn K]

I was in 2 different clinical trials through my doctors office as I had tried everything and was a null responder with a liver that was getting worse and worse over time.

It was just like my previous treatment had been maybe better tracking which made me feel I was getting good treatment and being well tracked. Unfortunately the trial medicines didn't work either but I had to try. Thankfully now I am cured.

So if you want to get on a first name basis with your treatment team clinical trials are a great opportunity especially if you are being denied treatment

Good luck
Lynn

[KimInTheForest]

Hi Ladybug, and welcome! I was cured in a clinical trial earlier this year (Harvoni+ribavirin, 12 weeks). A number of us on these forums have gone the trial route for getting the drugs we need. It's a good way to do it. And, as Lynn said, there tends to be more monitoring of the patient in a clinical trial. I was checked at Day 1, Week 1, Week 2, Week 4, Week 8, Week 12, and then post-treatment as well 2 times. At each check-up I had an extensive blood work-up  including viral load test, and the nurse had a sheet for me to report my side effects and to see whether my previously reported side effects were still in play.

If the trial has randomized arms with some arms getting the real drugs for the full duration and others not, then most trials have the policy that if you were in one of the placebo arms and did not get cured, they will give you the real drugs for full duration after you finish the trial. You might want to make sure that is the policy for your trial. In my case it wasn't relevant because the trial I was in was a single group Open Label trial - only one group of participants, all getting the real drugs for the full duration, no placebos.  Those are the best trials, imo.

Good luck!
kim

[Ladybug2013]

Thank you all for your feedback and advice. Kim, that's a good point you made there, I called my doctor today and have confirmed the study will not involve placebos and I will indeed receive the actual drug
I do like the fact that I will be monitored weekly, the only downside is it's really hard to get blood out of me, it takes a couple of tries evertyime, im all bruised up on my arms just from the screening and i have passed out a few times after blood has been drawn. I'll increase my water intake and hope it helps.

[Lynn K]

Being well hydrated prior to a blood draw definitely helps. I have soaked my arms in the sink in the lab with warm water also.

Also ask for the lab tech with experience with tough draws and see if they will use a butterfly instead of the regular needle

Good luck

[Ladybug2013]

Hi all:

Just wanted to give an update, today I started the clinical trial, it will be for 12 weeks. Two pills a day and no ribavirin, the pills have to be refrigerated which I found a bit odd lol. The doctor also gave me a phone which has an application for a daily diary Which I was instructed to enter everyday what time I take the medication, how I feel, etc. the blood draw went well, they will have a phlebotomist draw my blood evertyime, my next appointment is Friday of this week and they'll draw more blood and then again on Tuesday of next week for even more blood. Basically I have to get blood work done everytime I go to an appointment. I took the medication at 9am today and it is now 3:00 pm and I don't feel any side effects so far, hope it stays this way for the entire trial. I'll keep you all posted!

[beto]

Very cool Ladybug,

Thank you for letting us all in on this experience.  Not everybody gets blood draws so frequently.  It is valuable information for all afflicted.  However mostly, it is your turn for a cure.  Please keep us all posted.

[Philadelphia]

All the best! You might want to start a thread in the on treatment section - more people will see it there and I'm sure the information you have to share will be valuable.