my trial update

[summer7799]

My genotype test came back inconclusive again. The study nurse had me come in and is running the test one last time. If this test is inconclusive again, they are pulling me from the trial. I don't understand why this is happening! This is my 5th or 6th genotype test. I can't get onto any study trial without an accurate genotype. The study nurse said they have never had this happen to any trial patients before. I'm so bummed. But praying this last test will work!

[summer7799]

Thank you, its very frustrating. Im praying this last test works!!!

[summer7799]

Hi Will,
You remember correctly, my first dr (GI dr) could not detect what genotype I was after a few attempts. He wasnt sure what to do, so he sent me to the hepatologist. The hepa dr was able to determine that I was geno 1, using their own lab. This is the same lab they have used to try to determine my sub type. Its the lab they use for all their studies and trials. The test should come back next week and if its undetectable again, Im out of the study. They run numerous studies/trials at this hospital. So Im sure this would continue to be an isuue with other trials as well. This is very frustrating!!!

[katla]

I agree with Will. If they tested 5 or 6 times and couldn't determine subtype, what are the chances they will this time? Hopefully they can try another lab.

I really hope you can resolve this. I'd imagine all trials would require this information.

Wishing you the best of luck...kat

[Idyllic]

I think Pooh doesn't have a subtype and she is treating - not in a study though. I guess it makes sense to not allow an indeterminable subtype to participate in a study since there would be no meaningful way to classify the data. Still, it doesn't seem right.

[willbb]

I remember they had a hard time differentiating your type ..meaning the first lab could not say definitively whether it was G 1 or not. It was suggested to you that you get the specimen tested  at a more advanced lab possibly ..as there must have been a sequencing problem.

Is that what your doctor finally did to ascertain finally it was G1  and if so could the study send it to the same lab or possibly outside their normally used lab to ascertain sub-type (either a or b)? Can you inquire on this from them??   Just thinking out loud here summer...
Will

[jules2551]

Damn Summer sorry to hear about this!  I've been researching ever since you posted this but can't find anything on it.  All the pharma company labels say they do not need this information but I guess your trial wants it.  So hang in there kiddo maybe one of the "warriors' here will find something.  

Jules

[UKgirl55]

Oh summer, I am so sorry. This must be so frustrating.

[summer7799]

Correct. I am genotype 1. But they need to know if I'm 1a or 1b. If they can't detect it, I can't go further with the study. And it seems all the studies will be the same way.

[willbb]

You know your Geno type  (type 1) but not a or b ..correct?
Will