Anyone had Proton Beam Therapy for Meningioma?

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?

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.

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 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.

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 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.

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!

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 🙏

Hello. I investigated Proton Beam treatment for a meningioma that was found approximately 16 months ago. This tumor is not treatable with surgery or radiation. It can't even be biopsied bc of location. In my independent research of Proton Beam therapy, I learned that it's not radiation. It's not like Cyberknife, etc. Therefore, there isn't tissue destruction that occurs with actual radiation. However, for meningiomas, it does not typically result in tumor reduction. The goal for this is solely to stop tumor growth. This is the limitation of the quantum particle used to attack the tumor and the resistance to destruction of the meningioma tumor itself. The unique benefit that is available with Proton Beam therapy is that this is the only approach that is a consideration for tumors that are located in areas sensitive to consequences for collateral damage, that risks are to high for any other treatments. Proton Beam therapy is used often where the goal includes preserving surrounding tissue. The desired outcome for meningioma treatment is tumor restriction of growth and preservation of surrounding tissue. This is not to say that there may not be some impact upon other adjacent tissue. It's possible. This therapy requires many sequential treatments for meningioma. But since it's not radiation, (which can treat a cancer tumor in as little as a single treatment) there are few after- effects with sessions. The number of Protons Beam machine are increasing across the country. Insurance usually covers the treatment because it's standard and not experimental.
My status is that I'm stable. It appears that the tumor reached an end to growth in the past. I have some blood brain barrier damage and a small amount of cerebral edema at the site of the tumor. The edema is treated with low dose steroids if symptomatic. Occasional steroids resolve limited symptoms associated with the tumor. I have an upcoming MRI. My neurosurgeon said if it's unchanged, I'll be discharged. If they is a problem, we'll revisit the treatment plan.

I'm working on recovery from severe post Covid19 syndrome. That's been my primary struggle. I found an excellent doctor for this problem and I've made noteworthy gains in this area. But I don't have my life fully back yet. But I have significant restoration. Especially in the area of cognition and energy.
As always, I recommend that you carefully evaluate all non- professional information you read and hear. Experiences of others are helpful. Support is sustaining. But medically based information should always be verified. That's for everything you encounter in the Internet. Tho this forum is wonderfully moderated.
Wishing you the best.
Blessing,
RanchoSanteFeCowgirl

I could find that this 1st post posted so I reposted. Cant find a delete feature. So please ignore this and read my 2nd more brief post.