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Jeannie1 (@jeannie2)

My husband was dx with glioblastoma

Caregivers | Last Active: Oct 2, 2016 | Replies (24)

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Welcome to Connect @adri. I can only imagine your sadness and anguish. Both you and your father are so young to be on this journey – he as a patient and you as a caregiver and daughter. I love that you feel happy when you are with him. I say focus on the here and now and that happiness. Focus on the success of the surgery and the treatments.

@ljsandlin @eaglesview @jeannie2 @cynaburst, I hope you’ll join me in welcoming Adri.

Adri, how did you father do with Temadar treatments last time? Are you concerned about any side effects? Do you and your father have holiday or special summer plans?

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Replies to "Welcome to Connect @adri. I can only imagine your sadness and anguish. Both you and your..."

Hi, thank you for your words! He did just fine with the pills. I guess it has to do with his age, maybe. He is a tall guy, he used to be a runner so he is in very good shape. Yes, I’m kind of concerned about side effects but this is kind of our only choice, I guess. We don’t have any specific plans, I just want to be with him, no matter where.

@colleenyoung, I saw your message regarding glioblastoma and wanted to make sure everybody hears about the Duke University “breakthrough,” as declared by the FDA. CBS News broadcast details on its 60 Minutes program back on May 15, making it clear that it is one of the most exciting prospects ever in the war against cancer in general, not only brain tumors. I’d guess that @ljsandlin, @eaglesview, @jeannie2, @cynaburst, @adri, and many others will be greatly interested. Here are two links to the CBS News reports on the breakthrough:
Using modified polio viruses, Duke U medical scientists successfully attacked and killed glioblastoma in several patients. Although the cancer came back in a few cases, it had been made vulnerable to cancer-cell killers in their newly tuned-in immune systems that were working on the second tumor. The FDA and Duke are so encouraged by the discovery that they advanced it to Phase 2 testing that will be conducted through trials in 40 locations around the country!

At this stage of the research, such encouraging news is nevertheless conditional — participants in the trials can get the benefits in the medium term, but others must wait until the trials are completed and the therapy is offered to all. Until then, patients and their families may develop false hopes about obtaining a treatment now that is at least months away from being available to them.

Thanks for posting this @predictable. While this research indeed is very promising, I appreciate your pointing out that the study is in phase 2 trials, meaning that it will still be some time before this becomes standard treatment. It is important to evaluate the research reported in the news as you have done here.

I found this thorough article from the Family Caregiver Alliance on Evaluating Medical Research Findings and Clinical Trials
https://www.caregiver.org/evaluating-medical-research-findings-and-clinical-trials It is well worth the read.