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Access to clinical trials from oversea

Hi everyone, I have a question re clinical trials.
My mom is 59 y.o. with MLL-r AML. She is now 15 months after allo-HSCT and had molecular relapse (dPCR positive) 8 months ago.
She had gone through many lines of therapy but little showed efficacy. I notice there is a clinical trail for MLL-r leukemia patients which could really benefit her. However, the trial is conducted in the countries that are really far from us as we are in China. Long travel is not feasible as my mon has a very aplastic marrow, not to mention the costs. Our physician tried requesting compassionate use for us but it seems the drug can only be given in limited trial sites in the US.
I wonder if anyone has experienced similar situation and can provide some advice. Thanks in advance!
Rachel

  1. Hi . I personally am unable to offer you any advice on this. But while you're waiting for a reply, I found an article regarding clinical trials https://blood-cancer.com/living/getting-into-clinical-trial. I'm hoping it will have a link or a mention that will lead you to what you're looking for. It's great that you are looking out for your mom! I wish the best for both of you!
    Angie (Team Member)

    1. Thanks Angie, the article is so on point. I mean it's already so hard for local residents. The logistics are such a pain especially for blood cancer patients! I hope we can figure out some way to get into the trials. Rachel

  2. It is difficult to get into those trials sometimes and I remember my doc wanted me to do one at the Mayo clinic in Minnesota (I think). I just couldn't swing it and be there for a months at a time, so we had to give it up. Fortunately I went into remission with the treatment here, but I definitely was disappointed at the time. You could see if there's a charity or pro-bono service in the area where you need to go that can put you up. Sometimes the cancer society has a list of resources like that. Let us know if there's anything else we can do to help. Keep on keepin' on, DPM

    1. It is hard, and certainly, any time, it's what we are here for! If you need any recommendations around the NYC area let us know, it's where I went for treatment. Just remember, you are not alone! 😊 DPM

    2. Hi Rachel, Sorry you and your Mom are going through this. It sounds very hard. I wonder if a resource specialist at the Leukemia and Lymphoma Society might be able to help you. (https://www.lls.org/) Right on their home page you'll see various ways to connect with a resource specialist. They include calling, texting, emailing, chatting...basically any way that you feel comfortable.


      It looks like you are not alone when it comes to the problem of getting into clinical trials. Just so happens, the Leukemia and Lymphoma Society is running a story on why it is so hard to get into clinical trials. Here is the link:


      https://www.lls.org/news/new-report-reveals-barriers-preventing-cancer-patients-joining-clinical-trials
      According to the LLS website, "Clinical trials can be a lifesaving option for many cancer patients. They’re also a critical step in the process of developing new treatments. But too many patients face barriers when trying to access care through a trial. ."


      Good luck and let us know what happens.


      Ronni (blood-cancer.com team member)

































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