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

Posted by zaiq @zaiq, Jun 20 2:20pm

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!

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ruthannray | @ruthannray | Jun 29 7:30am

In reply to @pbennett46 "My mom, age 79, recently had surgery for GBM grade 4. It’s only been 2 weeks..." + (show)

I would think really hard about 4 to 6 weeks of radiation for a 79 year old. The cognitive impact of brain radiation can be immense. Please ask your doctor if there’s a lower number possible. Is my understanding that for people over the age of 70, 15 treatments, or three weeks, is the standard of care.

The SAGA study mentioned in the question seeks to discover whether a lower number of radiation treatments, 5-10 dependent on tumor size, is as effective as 15 treatments for people over the age of 70. If the tumor is larger, you’re definitely looking at 15 treatments. But by golly, not 20-30!

Good luck!

ruthannray | @ruthannray | Jun 29 7:32am

As for vision issues, a loss of peripheral vision for people with glioblastoma is very common. If you haven’t gotten occupational therapy to learn how to effectively deal with this loss of vision, please ask for that. It is available, and Medicare covers it.