Mayo Clinic Connect
Has anyone had either at Mayo Clinic or Johns Hopkins?
I had the Gamma Knife done for meningioma at the Mayo with very good results.
Liked by Colleen Young, Connect Director
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 –
Liked by Jamie Olson
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!
Liked by Scott, Volunteer Mentor
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 !
Hi @user_chea8a92a Let me begin by saying we learned very early on the fact brain cancer is highly individualized. Each patient is unique as is their body chemistry, brain make up (my wife was left-handed and that made significant differences for her than if she had been right-handed, etc. I say this as a prelude to explaining her experiences since they were hers. Also I am not medically trained in any way so these are just observations, what she experienced, and what we were told.
Her initial deficits were having auditory, olfactory, and vision hallucinations followed by severe headaches.
In my wife’s case she chose to have a stereotactic biopsy, which resulted in a hemorrhage. This hemorrhage caused many deficits, but due to it she also had emergency surgery and had much of her tumor resected at that time. She overcame almost all of her deficits thanks to her OT and PT work. Those that remained were left-side deficits in vision, hearing, and awareness.
In my wife’s case her tumor was very, very slow growing for many years.
What she dealt with was unique to her and not all what one might call ‘average’.
I was diagnosed with AO3 (anaplastic oligodendroglioma grade 3) in Jan. 2015. In Jan. 2017 I had a Gamma Knife radiosurgery. I’ve been on Decadron for the last couple months to manage the effects. I am now down to 2 mg; due for another MRI in the next several weeks.
Glad to share or help if I can. Are you looking for specifics?
Wow it’s so nice to hear from someone with an ogliodendroglioma! Mine is in my left frontal lobe- wrapped around my motor skill area! I had a biopsy did one year of chemo which I finished last April – tumor shrunk 5o%! I have no deficits and MRI’s are stable but I just never know what to expect!
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