My Dad diagnosed with GBM Grade 4, he’s asking about SAGA study

Posted by zaiq @zaiq, 5 days ago

My dad is 65 years old, he was diagnosed with GBM 2 weeks ago, it was literally shock for us, as we are a very well connected family, and my father considered as our hero who is undefeatable, it started totally when he started to have a blurry vision that he though it could be related to low sugar levels (although he is not diabetic), but then his mood and attitude started to become abnormal (Ups & Downs). When we got him to be scanned with MRI & CT, the Oncologist informed us that he has GBM with 2 tumors and now we have 2 choices, either the Palliative Care at home OR the Surgery followed by Chemotherapy and Radiotherapy.

My dad refused to have the surgery to avoid suffering and preferred to go with the palliative care. We don’t want to loose him and don’t want to see him suffering of pain, or loosing him within couple of months, this is very scary for us.

After long searching about the latest techniques other than the surgery, we found the news about the SAGA study using the Fractionated Proton Beam in combination with advanced Contrast MRI by Dr. Vora and his team.

After long reading about this technique, he found that he is meeting the criteria of the study, which is diagnosed with GBM and 65 Years and wants to be connected with any of the HCPs who are managing this study (Specially no surgery is needed as understood).

Sorry for the long story, but what I need from this community 2 crucial things for us; the first is what to expect for the GBM diagnosed patient and the best recommended practice for management, the second is how to be connected to the study leaders/managers (we have the full need docs MRI, CT, Blood Test, ECG, Echo, Vision Field Test)

Thank You!

Interested in more discussions like this? Go to the Brain Tumor Support Group.

My husband participated in the SAGA study through Mayo Clinic in Jacksonville. Dr. Daniel Trifelitti is head of the study. The clinical trial criteria include tumor size being no more than a certain size, so time is of the essence.
Good luck and God bless your father and your family as you go through this challenging time.

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My husband didn’t qualify since the tumor was too large. Good luck.

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@ruthannray

My husband participated in the SAGA study through Mayo Clinic in Jacksonville. Dr. Daniel Trifelitti is head of the study. The clinical trial criteria include tumor size being no more than a certain size, so time is of the essence.
Good luck and God bless your father and your family as you go through this challenging time.

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Thank you @ruthannray and God bless your husband!

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@dconway817

My husband didn’t qualify since the tumor was too large. Good luck.

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God bless him!

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@zaiq

Thank you @ruthannray and God bless your husband!

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Thank you and God bless you too.

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