• Ash's Avatar

    Well went to the doctor today to discuss my treatment and they where telling me about this clinical trial.

    Asked by Ash on Tuesday, November 6, 2012

    Well went to the doctor today to discuss my treatment and they where telling me about this clinical trial.

    Is It a good idea or should I just stick with chemo?

    15 Answers from the Community

    15 answers
    • Peroll's Avatar

      Clinical trials, like every other part of cancer treatment need to be fully ubderstood before going inot them. They and be a godsend or nightmare depending on the circumstances. Some trials have control groups that get a placebo instead of treatment others everyone gets treatment. Once a trial is done it can become very difficult to get, the drug even if it worked wonders for you, until full FDA approvals are recieved. Some insurance companies don't play well with trials. On the other hand you might be the first person cured of cancer by the drug.

      With any part of cancer treatment you need to ask lots of questions and get all of the information on the trial you can get. Know what the drug promises, know how the trial is set up. What is expected of you to participate in the trial onbce you have all of the information and understand it you can then with the help of your Doctors make and informed decision. Good luck and let us know if you can help in any way!

      almost 6 years ago
    • karen1956's Avatar

      What is the clinical trial. I was offered a clinical trial when I was Dx...it was a chemo trial....3 different arms randomly assigned.....all were approved chemos, but one added a new drug along with the "tried and true".....no experimenting at all....Clinical trials are important to cancer Tx/research.......ask questions and find out as much as you can before you decide Yes or No to the clinical trial.

      almost 6 years ago
    • Ash's Avatar

      Thank you Peroll that was very helpful.

      almost 6 years ago
    • Ash's Avatar

      The title on the packet I received says It Is a randomized phase 2 trial of preoperative MM-121 with paclitaxel In HER2-negative Breast Cancer. They did say It would be added In with the chemo.

      almost 6 years ago
    • nancyjac's Avatar

      Actually, that isn't true. In trials for chemo drugs, the control group does not get a placebo, ever. The control group gets the "current standard of care", which would most likely be the chemo your oncologist would give you were you not in the trial.

      Clinical trials can be a bit tricky in terms of who pays for what. The company running the trial should be paying for any meds/tests specifically and only required for the trial, while you insurance should be paying for whatever is equivalent to what treatment you would be getting were you not in the trial.

      almost 6 years ago
    • carm's Avatar

      Hello Ash, I am an oncology nurse and prior to nursing I was a clinical coordinator for drug research. I still dabble in it today. In one way or another just about everyone who responded is correct, but let me clarify some comments. Phase II are trials where the drug is about to be tested to see if it is effective to its target audience so technically you will get some drug but because it is randomized, you won't know which. If it is double blinded no one will know which except the drug house sponsoring the trial. Even with chemo trials there can be placebos but they would be used not so much alone but lets say two drugs compared to one and a placebo. So, in a phase Ii there might be 500 patients in the trial. If it proves beneficial then it goes to phase III and they widen the net from 500 to 5000 or more. Trials are great and totally voluntary so if for any reason you decide after a bit you don't think it is beneficial you can always drop out and go back to traditional treatment after a month. The benefit is that if it does prove effective, you can ride the trial all the way past approval or phase IV. If the trial is testing an already approved drug for a cancer it was not approved for originally, insurance companies will usually cover it because the FDA has given permission to use it off label. If it is a new never approved drug, it might be a bit harder but then the pharmacy house would help defray the cost. Hope this helps and good luck. Just make sure you read and go over the informed consent before you sign it. Carm.

      almost 6 years ago
    • Ash's Avatar

      Thank you all for your advice

      almost 6 years ago
    • po18guy's Avatar

      If it is a phase 1 or 2 clinical trial, you will most likely receive the experimental drug, as those earlier phases are pretty much drug specific. Phase 3 trials can be different and often are randomized. Doctor has a responsibility to inform you of this, and to help you personally, rather than simply to gain information about new drugs at the potential cost of your life. You may also withdraw from a trial and revert back to standard therapy if the trial drug does not work. Who pays for what is also very important. The drug company will often pay for the drug and for care that is specific to the trial, while leaving you or your insurance to pay for care that you would normally receive if you were not in the trial. Ask questions.

      The blessing of trials is that the latest thinking is applied and the latest targeted therapies are used. Oftentimes, the toxicity is lower than older drugs, which can be huge if you are older or in poorer health. Each and every drug that we receive has gone through the clinical trial process, so this is not some mysterious process that is applied to "iffy" drugs. Actually, I am alive solely because of a clinical trial. My lymphoma had defeated eight different drugs and no combination that was left held any hope of a remission. I was scheduled for one last massive dose and palliative care leading to hospice. The drug I received has kept me in full response now for over 3 1/2 years, and is now on the market.

      They are certainly worth investigating and considering.

      almost 6 years ago
    • Carol-Charlie's Avatar

      Ash, Sit down with the oncologist and get all the information you can. I know one of the best things done for me was a newly approved internal port for my ovarian cancer chemo. It was placed on/near my ribs... They accessed it with a rather long needle, but since they went in through the scar I felt nothing. They 'dumped' a liter of chemo drug and saline solution mixed into my abdominal cavity...to 'slosh around and kill any little floaters'. I was the first to have the procedure (but it was not a trial, it had been approved). at my oncologist office. I think it saved my life. I know the surgeon came out, told my husband and son what he'd found and asked permission to place the port.....They said yes. You might want to have a family meeting, mom, dad and surgeon with you. (I say that as a mother).

      almost 6 years ago
    • Harry's Avatar

      It is my understanding that the American Cancer Society believes that clinical trials are best for everyone. That said, find out every thing you can about what is being tested, who pays what, etc. See if it is a fit for you. Clinical trials tend to be held at the major research hospitals and that can mean that you get the best treatment possible.

      My grandfather refused to allow them to put a pin into his broken hip because this was a brand new treatment option (approximately 1930). "No one will experiment on me!" As a result, he spent the last 20 years of his life in constant pain.

      It's not an "experiment." It's a new treatment option--and the best way to get new drugs for treating cancer.

      almost 6 years ago
    • isnoop's Avatar

      a clinical trial saved my life. go for it.

      almost 6 years ago
    • Schlegel's Avatar

      First, no one gets a placebo. You either get the test drug or the current standard treatment. If it is a Phase 2 or Phase 3 trial, I would go for it because it has passed the safety test in Phase 1. If it is a Phase 1 trial, I would get lots of information.
      I was in a Phase 1 trial testing the combination of Rituxan and Velcade. It gave me a 34 month remission. Unfortunately, I got kicked out of the trial when I had a false positive PET scan at 8 months. I'm concerned that they will see this treatment as less effective than it was.

      almost 6 years ago
    • FreeBird's Avatar

      Here are a couple people with experience in that, to ask how they did with it.

      almost 6 years ago
    • Crash's Avatar

      I went with a clinical trial because there were no known cures. I was cured. Get on the internet, look up the new drug or treatment and read what there is to know. Check out the prognosis of whatever existing treatment there is. Weigh which one offers the better prognosis. See if you can have them both. Google T-Gen, http://www.tgen.org/, they're a genomic testing facility that is doing a lot of good work, especially in breast cancer. Stay positive.

      almost 6 years ago
    • mgm48's Avatar

      If the options become less and less the trials become more valuable. In my case all treatments currently available are just "buying time" so when a promising trail comes along, it is worth consideration. I tend to analyze the data and my wife checks out the doctor. For the trial I am going into both were positives. But it is always good to know why your doctor would suggest a trial. Shall I say that's an important bit of information. Then you need to assess your feelings. I for one would prefer to hit a home run (thereby scoring) than to hit a single and risk not scoring. So the trial fits my personality and the doctor felt it was a very promising drug that may work even better in healthier patients. Be aware of one other thing about trials, they may require more trips to the doctor and additional tests (that takes time!)

      There is also the altruistic view that trials advance the science for everyone and there would be no cancer drugs for any of us if no one had done a trial.

      Remember, in the end, there is no right answer. And only you can make the decision. My best wishes no matter what your decision.

      Keep it positive and smile :)

      almost 6 years ago

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