Anyone had Proton Beam Therapy for Meningioma?

How are you feeling now ? You are all very very brave and strong . My husband has had two chondrosacroma’s removed from the base of his skull. Very dangerous surgies , that were done at Jackson Memorial Hospital in Miami . This past surgery in January, they could not remove all of the tumor because a piece was to close to the curated artery . Right now they are closely monitoring it . If their are changes , proton therapy could be an option . Just wondering for anyone who still has piece of tumor that could not be removed ,…… their situations……praying for everyone 🙏

Hi,
Thank you for sharing your experience at the time. I'm 54 years old and had a subtotal resection of my meningioma tumor last year. I have been recommended proton beam radiation for the part that could not be removed and is resting on lateral rectus muscle and the optic nerve. I'm confident that radiation will help but have some fear of the side effects. Did you mean to say non-invasive? Did you have damage of other structures in your brain? I have been informed about 40% chance of compromise of my pituitary gland. Were you able to work during your treatment? Thank you so much for your insight, and like you, I work hard to remain strong and active!

Thank you for that wonderful advice, and yes, I do feel that each day is a blessing. You are quite an inspiration running 9 miles a week along with your other physical activities. It has been difficult to do much physically right now as my balance is off. Before I started having symptoms, I was walking several miles 3/4 days a week and working full-time. I wish you the best as you continue to get stronger each day.

Good Luck to you. Try to stay positive and make your goals simple. It took me 3 months to really get back to where I wanted to be, and it is a constant process. I work very hard at making myself stronger, not where I was before my brain surgery but better each day. I am happy with my progress and feel comfortable with myself today. I am older so my life is not as active as it was when I worked and I am grateful that is the case. I run 9 miles a week and walk another 15, I do yoga and weights to balance my body and hope that I can keep this pace for years into the future. I do see signs of word gaps in my thinking as sometimes I have a hard time pulling the word I'm looking for, but I make myself struggle until I find it. I'm going to take up a foreign language this year to push myself and hope that it isn't a road block for my brain. But as far and my physical well being I am happy and with my life and I enjoy my husband and my family every change I get. Each Day is A Blessing. Don't Waste It.!!!!! Do what you think is best for YOU.

Thank you for that encouraging information. I am happy to hear that your tumor has had not changed since the proton therapy. I am learning towards asking for this treatment for my meningioma.

I had it four years ago on my tumor which rests on my optic nerve. I had 28 treatments and all I can say is it was non evasive and so far my tumor has not changed and that's the best I can hope for. It is unoperable and it's really my only hope. I had MRI's every 6 months until this year. Now going forward once a year unless there is some change. It has definitely helped me to return to a normal life, will it last for the rest of my life I have no idea. Just grateful to have the chance to move forward with my life for whatever time is possible.

Thank you, Colleen. I am not sure since I have not spoken to my NS yet about this. I wanted to do more research before my next appointment. We do not have a Proton Therapy treatment center where I live so would have to travel to another state.

Hi Deb, I'm hoping @fiddlemama @mountainoceangirl and @paulaakelley70 will see this message and come to share their experiences with proton beam therapy and meningioma treatment.

@deblee is this an option that might be possible for you?