Share Your Story

[ciscrp_official]

Have you ever participated in a clinical trial? Do you know someone who is participating (or has participated) in a clinical trial? Share your Medical Hero story with our community today.

[Cropcrop]

I took part in the ICON8 trial in 2014 which was carried out to determine the best way to administer the paclitaxol and carboplatin regime to patients. I would take part in a future trial should the need arise. Fortunately I am currently over two years in remission.

[lankisterguy]

I joined a clinical trial in 2012 for Idelalisib (Zydelig) treatment of CLL (Chronic Lymphocytic Leukemia) in order to avoid chemo. It controlled my disease and put me in remission for 30 months. That drug was approved by the FDA as a result of the study I was on. I received outstanding medical attention and support from a world class team at Weill Cornell NY Presbyterian, (and I continue to get that fantastic service level since). Those were the positive benefits.

However I learned that the trial required many more tests, clinic visits and CT Scans than would normally be used by my expert medical team. The costs of those were passed off to my insurance as "medically necessary", fortunately my insurance did not involve copays, but that is not always true for other patients. The trial protocol specified 5 CT Scans in the first year and 4 per year after. That amount of radiation is higher than would be allowed annually for a worker in the Nuclear industry in the USA.

I've since advocated reasonable resistance vs. the sponsoring pharmaceutical companies to push back against excessive testing and radiation that benefits only the trial sponsor and not the patient.

Len

[wmay13241]

My wife, who has Stage 4, Grade 2 aggressive follicular lymphoma, participated in a single agent, Phase 2 Ibrutinib clinical trial in 2013-14; she progressed after 14 months and had horrible leg cramps. In 2016-present she is participating in a Phase 1 NIH CAR-T Phase 1 trial; she has been in complete remission for 13 months. Like lenkeck's comments, both trials required excessive CT and PET scans. Fortunately my wife is 70 and probably will not see any radiation effects. If she were a young person, I'd be worried about the radiation effects. See the long term effect chart at lymphomation.org/ct.htm

[Magnus1964]

I participated in the abiraterone + prednisone trial. The trail was see if abiraterone could be used before chemo.It kept my PSA down for 3 1/2 years.

I am now on a trial of xtandi and a mystery drug to see if the mystery drug will help the xtandi last longer. I just finished my first year.

[41273416a]

I am presently in a clinical trial. I went to UCSF in San Francisco for a second opinion after receiving a diagnosis of PSP. After 3 or more hours of testing they came to the conclusion of yes - it is PSP as close as thiey could tell. They also informed me of what the future holds and that there was no treatment available. I then inquired about a clinical trial my son and daughter had researched and they said pending the results of some of the tests I qualified for the trial. I started it in 2015 and am in the open label portion of the trial now. It has been a long haul but certainly worth it. I feel the drug is helping me in many areas. My speech is no longer slurred, I have almost no choaking when eating or drinking. Some of the problems are worse though. I am falling more, am quite weak, and continue to be sooooooo tired, all the time. My neck pain is very bad at times I have tried Botox for it. The last time I got better results than before, but we were charged $7000 for it. I have had itt four times and even though it is finally working, the cost is prohibitive. I have been in the PSP drug trial for 18 months now and am very hopeful.

Mary B?