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My Dad diagnosed with GBM Grade 4, he’s asking about SAGA study
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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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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1 ReactionMy husband didn’t qualify since the tumor was too large. Good luck.
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1 ReactionThank you @ruthannray and God bless your husband!
God bless him!
Thank you and God bless you too.
Hello Zaid,
I was diagnosed with glioblastoma back in September. I am 65 years old and not ready to give up so I had surgery, radiation and chemo. Now I'm finishing up with just the 6 months of 5-days per month chemo with the last month being July. I also did a gamma knife radiation procedure in February to focus on residual cancer cells. I have MRI tested several times with no real history of regrowth since. I'm hopeful it stays that way but I continue to do research on alternative treatments. We shall see how that goes. I hope your dad the best as he moves forward. Good luck to you all
My mom, age 79, recently had surgery for GBM grade 4. It’s only been 2 weeks post-op and she’s still having issues with depth perception and peripheral vision. Looking for anyone else who is having vision problems post-surgery and what you’ve found helpful. She soon will be doing 4-6 weeks of radiation every day and an oral chemo drug. Please share experiences for us to consider and be aware of. Thank you.
Howdy, well I can answer a couple questions. Vision depth perception has cost me many skin tears and bruises. I had to slow down and focus harder especially on turns .even simple turns or reaching for things. I gave up flip flops and shoes with to much nose or heel. Always tripping me up. I practice without a lot of light so I can after a few weeks know how close I am and yes it is like being mostly blind but helped me to locate close enough to stay out of trouble. That and a loved ones arm or hand. Hope that helped some.
Ps the peripheral vision i had to learn to look harder that direction to be sure of not missing something. Mine is left eye. It's taken over a year to get good enough to make turns more comfortable. Have a great rest of the day today and weekend 😀
My husband had GBM. I don’t think he had any vision issues. He was dizzy a lot though. His tumors weren’t removed. The doctor left them in when he did the surgery bexuswe he said they would just grow back. My husband did about 8 radiation treatments and that was all he could do. His bloodwork never allowed anymore. I don’t think the treatments helped him but I have read that other people do benefit from them. His biggest issue was sodium depletion due to the tumors. He was taking six grams of sodium near the end to keep his sodium levels normal. Be sure to watch for that. GBM rapidly depletes the body of sodium. I wish you and your mother the best.