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  • in reply to: Update on NIH Trial #78739

    Melinda, thanks so much for your kind words and concern. We are making progress. We have an appointment at NIH on August 4th for screening. I now have my foot in the door. And, there is a clinical trial at Johns Hopkins that is also treating Jeanne’s specific mutation. So, we are making progress. Thanks for all your love and prayers. You’re the best.

    in reply to: Update on NIH Trial #78737
    mbachini wrote:
    Hello All,

    I returned from NIH this week….8 months post treatment. I received wonderful news! I continue to have shrinkage in tumors, somewhere around a total of 42% overall since treatment. The other good news was that I had a PET scan for the first time since diagnosis of mets to lungs and it showed no evidence of metabolic activity in the tumors in my liver. I don’t have to return to NIH for about 4 months, which seems like a lifetime to me! I feel so happy and so very blessed!

    They told me that they were overwhelmed with calls after the articles came out, something like 400 calls in a couple of days! I also have been contacted via email, facebook, caringbridge and good old fashioned home phone….not hard to find my last name listed in the phone book….by so, so, many people! It has been an amazing journey. People just want HOPE! I even had the opportunity to meet some fellow fighters while I was back east this week.

    I hate hearing when patients are not accepted into this trial. It breaks my heart, and while I know it may not work for everyone, it saddens me that people who are out of options can’t give it a try. I do know that the scientists are working extremely hard to perfect this treatment and are so very hopeful for other treatments coming up. I encourage anyone interested to still give NIH a call. I also know that it is a time saver to have the tumor sequencing already done, the scientist that works on my cells said that alone saves a month worth of work on his part, and we all know how important time is. I want to help in any way I can so please don’t hesitate to contact me. I believe that we will be seeing some good results in the next couple of months and I can’t wait to have more success stories!

    All my thoughts, prayers and love to you all,


    This is Kim Thompson and Richard Thompson. We are SO very happy to hear about your last visit with NIH and the positive results. What a blessing you have been to so many others on this site and everywhere who are battling this. We can’t begin to thank you enough for all the advice and for sharing your story so that others may be aware of their options so they don’t lose hope!

    Keep telling your story, you are TRULY making a difference!!!

    My mother had her sequencing done and we received a call this morning that they found the specific mutation. We are awaiting a call back and will keep everyone informed.

    Thoughts and prayers to everyone and be thankful for every day, it is a GIFT!

    Thanks again Melinda!!!!!

    in reply to: Help with chemo? #78519

    Thanks so much for your help and replies. My wife’s oncologist is at St. Agnes hospital in Baltimore. Her name is Carole B. Miller and she is the head of oncology at St. Agnes and is from Johns Hopkins here in Baltimore. She comes highly recommended. My wife’s liver surgeon is Steven C. Cunningham, also from JH, and is highly recommended. I feel she is in good hands and both have been outstanding.

    My wife is 65 and in excellent health. Up until October, she has been in great health and even during all of this is doing great. Walks 5 miles every day, eats properly, doesn’t smoke or drink and is really in great shape.

    Again, thanks so much for your help. We really appreciate it.

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