Have you ever participated in a clini... - Understanding Cli...
Have you ever participated in a clinical trial? If 'yes' please comment your experience, if 'no' please comment why?
No trials near me for PPMS
I have done six clinical trials, so far. They provide access to cutting edge treatments. I live within an hour of both Johns Hopkins and NIH.
Spouse participating in acp 196 trial with outstanding results. 11 yrs w&w before becoming symptomatic. Very very grateful for opportunity
The way I see it if it can provide valuable information so that someone down the road doesn't experience what I am, it would be worth it. Plus I get more evaluation than I would if I was just undergoing Standard of Care.
My husband tried the lithium trial a few years ago, although we stopped mid way cause he got very sick from it and many died he would be willing to try again if it would help him walk again. He has CBD for eleven years now and is starting to decline fast.
Marge
Looked at several others, too. currently 9 weeks into a 30 week trial. hoping for positive results. No bad side effects.
My wife got 14 months before progressing in an Ibrutinib Phase 2 clinical trial. She has been in complete remission for 8 months in an NIH CAR-T trial.
I was on a trial for a non-met PCa drug for a little more than a year. It was through my Urology Group, so it was an easy fit. After mets were found, both my doc and trial docs argued whether I had or did not have mets. This turned me off. When it was clear I did, I was not quite sure what I would do. But my Oncologist made up my mind. So much so, that I now have a new Oncologist. You see, when I went to have a catheter removed, they refused because I had forgotten my co-pay. I made a comment to the receptionist that this was "f'n bullshit", after six plus years. The manager actually told my wife and I, that it was per insurance regulations that I pay before being seen. Fortunately, my wife is a medical office manager too, and called her out on it. So, when I did see the doc and he removed the catheter, he said I would need to find another practice. "Nobody calls my staff fucking shit'" he says. I was floored. So was my wife. Since then, I have heard not a word from either my former Uro group, or the study group. I signed an agreement which was not held up on their part at all. I find it quite ironic that both were utter failures in their respective professions. I think lawyers may get involved soon.
Joe
Glad to have an opportunity to have a minimally invasive and potentially curative treatment of Focal Laser Ablation with no long term side effects.
I have been on two trials, one with aboraterone and one with xtandi.
I would only participate in a trial at a reputable cancer research hospital where they conduct many trials, have support staff in place, and know the drill in case there are reactions to drugs or side effects that require knowledgeable intervention. My other requirement is that it not be a blind trial, where it is not clear what drug will be administered. I want to know what I'm taking, and I want it to be a drug with the potential of helping me, not a placebo or some other medication. Fortunately for me, I live in the Boston area where there are many trials researching cutting edge drugs for CLL (and other diseases), and competent doctors and nurses who are well acquainted with the disease, the drugs and ramifications.
On the plus side, being in a trial allows access to drugs that are showing promise and are not yet FDA approved. While there is risk involved as a guinea pig, there is also the hope of healing, as well as the reward of knowing that you are part of the greater good of helping to discover treatments for future patients.
I was in a Phase II trial for Idelalisib (pill) + Ofatumumab (infusion) as frontline treatment. I had been watching positive results in Phase I trials, and Idelalisib was approved by the FDA for relapsed/refractory CLL the week before I entered the Phase II trial. I was psyched to receive an oral drug that was showing great promise instead of true chemo. I'm not sure if I would have the courage to participate in a Phase I trial, the initial discovery phase to see if the drug is more effective than harmful. My gratitude to those brave souls willing to test the waters in this way.
The down side of a trial is that one must adhere to a schedule of many more blood draws, scans, bone marrow biopsies and other tests than when in standard treatment. This means increased exposure to radiation and potential infection, which does little to help the patient, and hopefully gives the researches a detailed picture of progress measured against the patient's DNA and markers. Instead of 2-3 vials of blood for labs, they drew 10-25 vials from me each time, many of which were sent to research centers where they were analyzing the effects of the drug at different intervals. I constantly wondered at the irony of having to donate so much to the cause when I already had a minimum of red blood cells to offer.
I would definitely participate in another trial if the Ibrutinib I'm now taking as standard treatment is no longer effective, either if there were another not yet approved promising drug or if combinations of known drugs were being tested for greater success. Patients receive much more attentive care in a trial, as researchers want to observe progress and changes over short periods of time.
While life is a lot easier in standard treatment, with fewer visits, fewer blood draws, and the ability to say yes or no to invasive tests, it can be unsettling when things are deemed to be going okay, and there are 2-3 months between blood draws and consultation. With the newer designer targeted drugs, with their high price tags, a definite down side of standard treatment is having to come up with money to pay the expensive cost. Drugs are usually free in a clinical trial, though there were charges for side drugs, the nurses and use of the infusion room, blood labs, etc. The insurance payments didn't come close to the charges, and the hospital never billed me for the remainder.
All in all, participating in the clinical trial was a positive experience, from the dedicated staff to the quality of care, with the addition of knowing that I was helping to determine the efficacy of the drug for future patients.
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. She has been in complete remission for 13 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.
