What was a benefit of taking part in ... - Understanding Cli...

Understanding Clinical Trials
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What was a benefit of taking part in a clinical trial?

Have you participated in a clinical trial before? What, would you say, were the benefits?

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I did the ICON8 trial at Christies in 2014 for stage 1c3 ovarian cancer, I had my paclitaxol weekly and carboplatin every 3 weeks. The benefits were that my bloods were done every week, the side effects of the chemotherapy were reduced and I felt that I was being really well looked after both physically and psychologically and I will be seen for a total period of 10 years which is also really comforting. ❤️Xx Jane

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A clinical trial saved my wife's life!

In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again.

She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of August 4, 2017, she has been in complete remission for 17 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission. There is more information on CAR-T for fNHL patients and people considering CAR-T at fnhlben.wordpress.com/

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I have been involved in many clinical trials. It's a great way to help clinical /medical researchers to understand the issues people with particular conditions face on a day to day basis, so that we can make sure others don't have to suffer them. One of the other benefits of participating are that you can learn a lot about your condition and how others cope with theirs learning from peers......;-)

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I am now on my second drug trial. The one benefit I can testify too is access to extremely expensive drugs. I was on an aboraterone study, cost $6500 per month. I received 3 and 1/2 years of aboraterone free. I am currently on a study with xtandi, cost $9500 per month. I have been on this trial for 17 months so far.

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I had stage four CLL, and the FDA approved chemo was not working. My doctor got me into a clinical trial for ibrutinim with Dr. Jonathan Byrd at a Ohio State. I had some serious side effects, mainly, bleeding, but I have been in complete remission for 2 1/2 years. My immune system is still comprised so I get IVIG every six weeks.

Thanks to the medicine and the care from Dr. Byrd and his staff, I am able to be here to talk of the benefits of clinical trials.

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