Anyone had Proton Beam Therapy for Meningioma?

Posted by deblee @deblee, May 10 10:59am

Has anyone received Proton Therapy for their meningioma? If so, was it successful in reducing the size without surgery? Thank you.

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?

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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.

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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.

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@xsk8er

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.

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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.

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@deblee

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.

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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.

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@xsk8er

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.

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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.

Liked by kcl

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