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Clinical Trials?

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Comments

  • califsue
    califsue Member Posts: 80
    tammy41 said:

    hi cyndi im also stage 4
    hi cyndi im also stage 4 found out march of 2007 mets to liver had the colon and liver resection same year. then on folfox and avastin then on to cpt11and erbatux but 6 months ago ct scan showed spots back in the liver and 2 in the lung. my first thought was o my god i am done what more can i do ...but they had me wait 6 weeks and i started in a study it has been 4 months first ct showed stable didnt get smaller but good news is it didnt grow.had a ct scan on mon i will get the results next mon. but best of all i feel wonderful my only side effects are a small rash on my face and chest and head and shoulders shampoo takes care of that.please try not to be scared(easy for me to say)because im sure the dr will come up with a good plan for you take care tammy

    Hi Tammy
    Hi Tammy,

    Just read your post. I'm glad that you feel wonderful and that your mets are stable so far. I hope that your scan results on Monday are good.

    How did you go about choosing your trial? What's the name of your trial and where is it being conducted?

    Thank you,
    Susan
  • califsue
    califsue Member Posts: 80
    peterhw said:

    Hi Cyndi
    I started clinical trial at Johns Hopkins two weeks ago, after 12 Folfox and 12 Folfiri. I also have KRAS mutation, so Erbitux is not for me. My onc actually encouraged me to seek clinical trial, even though I have not run out of chemo options yet. There are lots of clinical trials available, some of them are very promising. I am sure your doctor will find a good one for you.

    Peter

    Hi Peter
    How did you go about choosing your trial? I'm new at this and could use all the help I can get. When I asked my consult oncologist about the trial that you are in, he said that he was not famiiiar with the data and couldn't comment.

    Thank you,
    Susan
  • califsue
    califsue Member Posts: 80
    John23 said:

    Clinical trials?

    I hope everyone understands that when you sign into a clinical trial,
    you -do not- know if they are giving you something that might cure
    you, or if they are giving you a placebo.

    Understand: They do not tell you what group you will be in.

    I was a 3c/4 colon cancer victim 3+ years ago. If I get worse,
    I will try other options, but I wouldn't want to give a year of my
    time, only to find out they were giving me protein and water to
    see how I compare with the one getting "the cure".

    Life's short, and there other options aside from the blind trials.

    Listen, cancer scares us all. It's difficult to think straight when you're
    so afraid of dying, but we should really try to take time out to think.

    We should take time to research other options that many others
    are finding success with.

    Shake the fear!

    Hi John
    I read from your bio that you are into TCM. I would love to go down that road. I live in Orange County, Calif. and already spent $2,500 on a "TCM" specialist. Who gave me and everyone else the same bottles of pills and the same accupuncture treatment no matter how different my body was each time I went in.

    How do you find a good TCM practitioner?

    Thank you,
    Susan
  • peterhw
    peterhw Member Posts: 69
    califsue said:

    Hi Peter
    How did you go about choosing your trial? I'm new at this and could use all the help I can get. When I asked my consult oncologist about the trial that you are in, he said that he was not famiiiar with the data and couldn't comment.

    Thank you,
    Susan

    Hi Susan
    I chose the clinical trial after talking to the doctors at Johns Hopkins. I also visited University of Pittsburgh, Sloan Kettering and Georgetown. I am very impressed with Hopkins program. They have lots of trials going on. You also can find available trials at http://clinicaltrials.gov

    The detail of my trial is here http://clinicaltrials.gov/ct2/show/NCT00819169

    Peter
  • John23
    John23 Member Posts: 2,122
    peterhw said:

    Not all clinical trials are the same
    The clinical trial I enter is not "blind", nor "placebo controlled". It is an "Interventional, Treatment, Non-Randomized, Open Label, Parallel Assignment, Safety/Efficacy Study". Here is the link http://clinicaltrials.gov/ct2/show/NCT00819169

    When I talked to the doctors that do the research, they are very clear about which group I will be in. It is an "Open Label" trial, so we all know what drugs and how much we are getting. If it is a "double blind" or "placebo controlled" study, they need to let the patients know before they sign the consent form.

    Peter

    Studies, and trials
    Correct, Peter!

    There are trials using adjunct therapy, that have to be used along with
    a patient's prescribed Chemotherapy.

    And there are trials (preliminary studies) of new compounds.

    What you are referring to, is as they state:

    "Part 1 is a dose escalation segment to identify a dose of AMG 655 in combination with AMG 479 that is safe and tolerable.

    Part 2 will evaluate the safety and estimate the efficacy of AMG 655 at the dose selected in Part 1 in combination with AMG 479 "


    Those are preliminary studies.

    These are generally studies to find the amount of product that won't
    cause a major problem, yet have the response they are looking for.

    Neither of those studies are what is needed to learn what effect the
    product will have as far as actually curing anything. For that, they
    do tests that use control groups, as mentioned in the link I had provided.

    To actually "prove" that the compound will do what it's makers say,
    it has to be compared with groups that are not taking it, and the elimination
    of any factors that might disguise the true effectiveness.

    Phase 1 and 2 are "studies" (in this case), and may or may not proceed to
    full trials of the product. The full trials undoubtedly will conform to the
    usual blind and double-blind tests, along with placebos.

    I hope you fare well with the study. If you have decided to go ahead
    with it, then you should face it with full conviction, provided they have
    given you an honest accessment for a chance of improvement due to it.


    Stay healthy Peter, and keep us posted!


    (I may want to join you)
  • califsue
    califsue Member Posts: 80
    peterhw said:

    Hi Susan
    I chose the clinical trial after talking to the doctors at Johns Hopkins. I also visited University of Pittsburgh, Sloan Kettering and Georgetown. I am very impressed with Hopkins program. They have lots of trials going on. You also can find available trials at http://clinicaltrials.gov

    The detail of my trial is here http://clinicaltrials.gov/ct2/show/NCT00819169

    Peter

    Thank you Peter
    Thanks for the information. I will search the sites. Seems overwhelming, but I suppose that you have to start somewhere.

    Please keep us informed about how you are doing. Best of luck to you,
    Susan
  • tammy41
    tammy41 Member Posts: 48
    John23 said:

    Studies, and trials
    Correct, Peter!

    There are trials using adjunct therapy, that have to be used along with
    a patient's prescribed Chemotherapy.

    And there are trials (preliminary studies) of new compounds.

    What you are referring to, is as they state:

    "Part 1 is a dose escalation segment to identify a dose of AMG 655 in combination with AMG 479 that is safe and tolerable.

    Part 2 will evaluate the safety and estimate the efficacy of AMG 655 at the dose selected in Part 1 in combination with AMG 479 "


    Those are preliminary studies.

    These are generally studies to find the amount of product that won't
    cause a major problem, yet have the response they are looking for.

    Neither of those studies are what is needed to learn what effect the
    product will have as far as actually curing anything. For that, they
    do tests that use control groups, as mentioned in the link I had provided.

    To actually "prove" that the compound will do what it's makers say,
    it has to be compared with groups that are not taking it, and the elimination
    of any factors that might disguise the true effectiveness.

    Phase 1 and 2 are "studies" (in this case), and may or may not proceed to
    full trials of the product. The full trials undoubtedly will conform to the
    usual blind and double-blind tests, along with placebos.

    I hope you fare well with the study. If you have decided to go ahead
    with it, then you should face it with full conviction, provided they have
    given you an honest accessment for a chance of improvement due to it.


    Stay healthy Peter, and keep us posted!


    (I may want to join you)

    cyndi sorry i didnt get
    cyndi sorry i didnt get back to you sooner the study i was on was called panitumumab i went every 2 weeks for my half hour treatment. some people are having good results i was not one of them i found out today that the cancer is still growing in the lung. so they will put me in another study that is called phase 1 multi-arm study of brivanib and capecitabine it is oral chemo. i will start in 2 weeks will let you no how things are going take care tammy
  • lisa42
    lisa42 Member Posts: 3,625
    cyndi2324 said:

    Clinical Trials?
    Lisa,
    I do not know how to send a PM. I did try to send info to you 3 times yesterday.
    Cyndi 2324

    got it & how to PM
    Hi Cyndi,

    I did see your info on your clinical trial- it is posted slightly above this now- thanks!
    I actually did speak to a man from Tenneesee who is taking Dr. Cantrell's treatment. It was great talking to him and he says it's like a miracle. He was ready to go on hospice and his PET is now showing Nothing and his CT show just one tiny nodule left, which they will surgically remove. He told me lots of details, which I think I'll post on another thread so more can see and read it.

    By the way, to PM, you need to go to the "CSN Homepage", then click on "new email" (or maybe it's "new message". You then need to enter the person's screen name, then type the message to them. Hopefully it will work for you in the future.

    You take care and hope finding a trial will work out for you!

    Hugs,
    Lisa
  • John23
    John23 Member Posts: 2,122
    califsue said:

    Hi John
    I read from your bio that you are into TCM. I would love to go down that road. I live in Orange County, Calif. and already spent $2,500 on a "TCM" specialist. Who gave me and everyone else the same bottles of pills and the same accupuncture treatment no matter how different my body was each time I went in.

    How do you find a good TCM practitioner?

    Thank you,
    Susan

    TCM
    I'm attempting to locate a referral. It'll take a bit.