Has anyone had either at Mayo Clinic or Johns Hopkins?
Interested in more discussions like this? Go to the Brain Tumor group.
I had the Gamma Knife done for meningioma at the Mayo with very good results.
Thanks for your reply. Were you at Mayo recently? If you don’t mind my asking, who was your Doctor there? My sister has an appointment there at the end of the month.
I have multiple doctors because they took care of me for parotid cancer too. Dr. link took care of the gamma knife for my meningioma in 2014. The goal was to stop growth and mine has decreased in size. Your sister is in good hands there.
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I am still following up to for the meningioma and the parotid cancer, so I am a current patient (just there last month)
How tough to be diagnosed with 2 cancer simultaneously. Did you know that we also have a Head & Neck Cancer discussion group? You may be interested in joining these discussion too.
– Head and neck cancer https://connect.mayoclinic.org/discussion/head-and-neck-cancer/
– Mouth sores, no taste and no saliva and other side effects https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-squamous-cell-carcinoma-of-base-of-tongue-level/
Thanks so much for your reply and I am hoping you continue to have good results.
My sister goes back Aug 9th to meet with Dr. Burns
and Dr. Sarkaria. Sorry I could not finish post.
I had Proton Beam Radiation – 6 weeks – 7 minute treatments daily – had no side effects, felt great the entire 6 weeks. The Bragg Peak phenomena means that radiation drops to “nothing” immediately. 6 years later, just had MRI – absolutely no growth – Dr. said “tumor was killed but stays in place”
I’m pretty sure the Phoenix Mayo has the equipment. Google this and consider it –
Thank you for your reply. My sister is supposed to go back to Mayo in Rochester Aug 9th. She had surgery in 2001 for a frontal lobe meningioma. She has 3 new tumors in different places. The proton beam treatment was mentioned along with surgery and possibly Gamma Knife. One tumor is growing faster than the others. She is worried about having surgery out of state. We live in Atlanta. Glad you are doing well and had no side effects. Best Regards,Nancy
Anybody have an ogliodendroglioma?? If so could use some support!
Hello @user_chea8a92a Nice to e-meet you here. I am Scott and my wife was diagnosed with an ogliodendroglioma when she was 49. While I don’t have the tumor, I am willing to share whatever I learned from her during her illness with it. I realize brain tumors are highly unique in how they effect individuals, but feel free to ask any questions you might have and I will share what I know from our shared experiences.
Peace & Strength
What were your wife’s deficits? Was her tumor removed or inoperable? Doctors say this type of tut can be maintained for decades! Please share any facts you may know !
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