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Canadian / International patient seeking help for US clinical trials
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Canadian / International patient seeking help for US clinical trials

› Forums › General Melanoma Community › Canadian / International patient seeking help for US clinical trials

  • Post
    • April 11, 2017 at 7:15 pm
    David McCaw
    Participant

      Hello, I am out of treatment options by my local oncologist. I progressed on ipi / nivo combo and nivo mono. I was on cotellic MEK inhibitor the last three weeks, but denied any more compassionate drugs based on prescription was combo and my mutation is non v600 or k601n.  I have an initial consult with Toronto oncologist for Tils in 2 weeks.  If I am not accepted,  then I will pursue US clinical trials, unless something else is offered,  although mostly phase 1 toxicity and dose escalation, which Onc states 10% response.

      My local oncologist stated that my treatment will be either Ottawa or Toronto.  I am covered by provincial health care and don't have private insurance.  The question I have for the  US trials;  I assume that drugs would be covered by pharmaceutical company, then I need to fund travel &  lodging.  For international patients,  how does the funding of the hospital care get taken into account?  Are there better locations to negotiate costing than others?  Also, do I need a US oncologist to recommend any of the trials?  If so, since I am located in Northeast, then MSK , NYC or Boston would be closer. If requied travel to MD Anderson, TX.

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    • Replies
        • April 11, 2017 at 10:18 pm
        Prd10
        Participant

          Hi David,

          Sorry you are going through this.  I'm hoping to start a clinical trial next week (Imgcp100 with durvalumab) if I can pass all the testing first.  You are correct that the drug is covered.  I was clearly told that the Drs visits and follow up scans are not covered as part of the study. I'll also need two separate hospitalizations and I'm waiting to see if they are covered as part of the trial.   Fortunately or unfortunately I max out my deductible every year so it's not a big concern for me.  

          You will need an oncologist to recommend and confirm that you qualify for a specific trial.  I'm in Chicago and have been happy with my treatment here, but certainly MSK, NYC and MD Anderson are all fantastic too.  

          Wishing you well.  Caitlin

            • April 12, 2017 at 11:53 am
            David McCaw
            Participant

              Thanks for your input Caitlin.  I think for now I will contact NIH.  Take care

            • April 11, 2017 at 11:07 pm
            tschmith
            Participant

              Hi David!

              Have you considered NIH in Bethesda, Maryland? (National Institutes of Health) People come from all over the world to participate in their clinical trials.  (I was treated there in 2014.)  A social worker helps you work out the details of travel and lodging.  I live in the area, so that wasn't an issue. Since it is solely a research hospital, your hospital care is paid for.  I don't think a US oncologist would need to recommend you for their trails.  

              I wish you all the best!

              Terrie

              • April 11, 2017 at 11:07 pm
              tschmith
              Participant

                Hi David!

                Have you considered NIH in Bethesda, Maryland? (National Institutes of Health) People come from all over the world to participate in their clinical trials.  (I was treated there in 2014.)  A social worker helps you work out the details of travel and lodging.  I live in the area, so that wasn't an issue. Since it is solely a research hospital, your hospital care is paid for.  I don't think a US oncologist would need to recommend you for their trails.  

                I wish you all the best!

                Terrie

                  • April 12, 2017 at 3:02 am
                  David McCaw
                  Participant

                    Thanks Terrie, that good to know. I will reach out to them. Is there any particular person to contact for international patients,  if not i will call and ask.  I appreciate your help,  it good to have options 

                  • April 11, 2017 at 11:07 pm
                  tschmith
                  Participant

                    Hi David!

                    Have you considered NIH in Bethesda, Maryland? (National Institutes of Health) People come from all over the world to participate in their clinical trials.  (I was treated there in 2014.)  A social worker helps you work out the details of travel and lodging.  I live in the area, so that wasn't an issue. Since it is solely a research hospital, your hospital care is paid for.  I don't think a US oncologist would need to recommend you for their trails.  

                    I wish you all the best!

                    Terrie

                    • April 12, 2017 at 12:24 am
                    geriakt
                    Participant

                      I am currently on a Clinical trial stage 3B having 25 NIVO treatments. I am currently on 3 years of CT scans. Part of my qualifications for my Trial from BMS was I had to have current medical insurance. This is to cover costs if you should become ill from the treatment. Once you are sick or progress you are kicked off the trial and on your own.

                      You will need to check to see if your nationolized Canadian inssurance will cover treatment in the USA and if the hospital you do your trail at will accept your insurance.  The NIH may be your best bet to until trial treatment. You should contact them.

                      Tom

                        • April 12, 2017 at 11:50 am
                        David McCaw
                        Participant

                          Thanks for the advice Tom.  All the best to your good  health.

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