Discussion Board Forums General Discussion Please, I need your input

Viewing 15 posts - 1 through 15 (of 24 total)
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  • #72370
    marions
    Moderator

    Thanks so much for your responses. It pretty much sums it up:
    1. patients and physicians are not aware of the study
    2. physicians not pro-study
    3. patients have to find their own study, try to understand and see if it presents a reasonable choice.
    4. Inconvenience and cost involved prevents people from entering studies
    5. Other treatments are available

    Thanks again, please don’t hesitate from adding to the above. I still have some time to make changes to my presentation
    Hugs,
    Marion

    #72369
    rosegrace
    Member

    My MIL looked into a clinical trial at Mayo. A major reason for not entering it was because the costs, if there were complications were not covered. One of her two insurances was not going to cover Mayo anyway, so it could have potentially cost her money to be a part of the trial.

    #72368
    gavin
    Moderator

    Hi Marion,

    Saw this piece on the news here in the UK today and thought that it might be of interest to you with regards to your clinical trial presentation.

    Big rise in volunteers for medical trials –

    http://www.bbc.co.uk/news/health-22594635

    Video piece that was on tonights news –

    http://www.bbc.co.uk/news/health-22655025

    Hugs,

    Gavin

    #72367
    rin
    Member

    My husband’s first oncologist (who also pronounced him non-resectable with “a belly and chest full of disease,” which –thank goodness!–was not the case) told us that because clinical trials were not supported by the available literature, that he did not recommend them to his patients. Of course, building a basis for future data-driven recommendations for patients seems to be the point, but at the time of the diagnosis we were too shocked to argue with the guy. Incidentally, he did not remain our oncologist for long.

    In any case, our experience has been that the need to move forward with treatment options trumps the patience and persistence it takes to find and determine one’s eligibility for a study. Additionally, it takes a cancer research team to figure out where the trials are being held and how you might fit into their protocols. Since my husband has been through two different kinds of chemo and a resection in the four months since his diagnosis, we find that he’s no longer eligible for a number of trials that we’ve researched. I do not think that we would have been willing to allow the cancer to progress while we waited around to determine whether or not we fit the parameters of a trial. The day that Dr. Selby–an amazing, brilliant surgeon who sees possibilities where other physicians see boundaries–pronounced my husband resectable, he was ready to climb onto the table with whatever butterknife and bandaids were available. At that point, no trial was worth waiting for. We saw a path that gave us hope, and we jumped on it.

    #72366
    holly22a
    Member

    I am late but I found only two trials I could participate it, the paperwork requirements are steep and nyp hospital is terrible about getting out your medical records (almost impossible) and third, my oncologists are against the trials. That’s a lot to go up against.

    #72365
    marions
    Moderator

    Thanks everyone. This is helpful. Today I will finish the outlines of the presentation, but please don’t hold back from sending info to me.
    Thanks all of you wonderful people.
    Hugs,
    Marion

    #72364
    kris00j
    Participant

    For the first two years of my fight, everything needed to be decided ASAP! A couple of months ago, the cancer spread to a new node, but the onc didn’t feel it was “life threatening”. So I decided to do the trial. Being otherwise healthy, I am a good candidate because I don’t NEED immediate response this time. I WANT immediate response, and sure hope this new drug works.
    I have an urge to help people, especially since the diagnosis, and this is the best way I know to do it.
    The biggest problem I encountered was with insurance, which is a major hurdle for most patients. I think more of us would contemplate trials if insurance companies would be cooperative.

    #72363
    thebompie4
    Member

    quality of life is a huge limiting factor. My husband doesn’t want to be far away from us for months at a time. The kids need to stay in school, and I need to keep my job, so we wouldn’t be able to travel with him.

    ^^^^^ yes! sweet green! those are HUGE as well!

    #72362
    sweetgreen
    Member

    Hi Marion, This is a great question. I agree with everything posted above. Additionally:
    * because there are so few options with CC, and it’s so aggressive, we didn’t want to gamble on something that hadn’t been proven to have some success.
    * searching the clinical trials database is exhausting. The descriptions/search terms don’t seem to have a lot of consistency. You could search on cholangiocarcinoma and get one set of trials, and search on bile duct cancer and get another completely different set. Sometimes it’s better to search for solid tumor and then narrow it down.
    * it would be helpful to have a patient advocate who can search for trials for us.
    * quality of life is a huge limiting factor. My husband doesn’t want to be far away from us for months at a time. The kids need to stay in school, and I need to keep my job, so we wouldn’t be able to travel with him.

    #72361
    cathy1024
    Participant

    When I was in Nashville I applied to stay at the Hope Lodge through the American Cancer Society. It is free and offers rooms with 2 beds and a huge kitchen with locked cabinets and refrigerators to store food to let you cook all your own meals. Plus many organizations would cook for the lodge. It was awesome and I met some really great people.

    Cathy

    #72360
    lainy
    Participant

    Lisa, I just knew that!

    #72359
    lisacraine
    Participant

    Our house is alway is always open…..we would love to help someone.
    Lisa

    #72358
    lainy
    Participant

    I just had one of my craziest thoughts ever. Please feel free to disagree, this one is way out of the box! It is cwazy! What if! What if someone fit a trial but the cost is enormous because of a place needed to stay for like 4 – 6 weeks! I know I would have no problem to offer to stay with me? What about you?

    #72357
    marions
    Moderator

    Thanks so much for your comments. I will present these comments at the upcoming ASCO closed door session and of course present at DIA in June. Please, be so kind and follow with your comments, because all are important to pass on to the NCI, FDA, NIH, etc.
    Thanks for all your help.
    Hugs,
    Marion

    #72356
    thebompie4
    Member

    my husband looked into several clinical trials.

    because of the “usual” late stage (3 or 4) diagnosis with this cancer–
    he was not eligible to participate in the one that interested him most.

    as someone else mentioned, if trials are not in your area (state/town/
    close proximity) the cost of travel and staying in another part of the
    country for an extended period of time can be make participation
    very inhibitive (cost wise).

    there was one in Mass. that was ALMOST a fit for him–but he was too
    far advanced (stage 4) and he also would have had to stay in Mass for
    about 6 weeks (at his expense).

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