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Anyone had Proton Beam Therapy for Meningioma?

Posted by deblee @deblee, May 10, 2020

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

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jessetimmer | @jessetimmer | Feb 12 8:45pm
In reply to @bevpac "Thank you for your post. Mayo also recommended 28 Proton treatments on my cavernous sinus meningioma..." + (show)
@bevpac

Thank you for your post. Mayo also recommended 28 Proton treatments on my cavernous sinus meningioma also. Did you have any cognitive deficits? Pituitary problems? I’m checking with MD Anderson to see if they recommend the same. But I feel confident that Mayo’s program is great. Where did you go for your Proton treatments?

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I did the proton in Rochester Minnesota to zap what was left after my brain surgery then did 9 months pill form chemotherapy after that it's going to be 5 yearsnow and I'm doing great no reoccurrences

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woody1234 | @woody1234 | Feb 16 10:32pm
In reply to @xsk8er "I had it four years ago on my tumor which rests on my optic nerve. I..." + (show)
@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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I start treatment next month for four weeks hope all goes well. Woody davis

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bevpac | @bevpac | Feb 22 7:31am

I just wanted to check in. Tomorrow will be 2 weeks since the completion of my 28 Proton Beam treatment's. My energy level is better. I still have my double vision, they told me this may not improve (30%) chance. I have other side effects but hopefully in time they will improve. But hopefully the meningiomas will not grow any larger & cause further problems. Everyone at Mayo is wonderful & I feel like I got the best possible treatment. I hope & pray for all of you, that everyone does very well and we can all get on with a healthy life.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 22 11:36am
In reply to @woody1234 "I start treatment next month for four weeks hope all goes well. Woody davis" + (show)
@woody1234

I start treatment next month for four weeks hope all goes well. Woody davis

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Welcome, @woody1234. Where will you be getting treatment? Do you have any questions as you prepare to upcoming treatment?

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robineliza | @robineliza | Feb 22 8:41pm

Hi I was just told that I have this tumor. What type of therapy is that?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 27 11:44am
In reply to @robineliza "Hi I was just told that I have this tumor. What type of therapy is that?" + (show)
@robineliza

Hi I was just told that I have this tumor. What type of therapy is that?

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Welcome @robineliza. Here is more information about meningiomas and proton beam therapy from Mayo Clinic.
- Meningioma https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643
- Proton Beam Therapy Program https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488

Treatment for a meningioma depends on many factors, including:
- The size of the meningioma and where it is.
- The rate of growth of the tumor.
- Your age and overall health.
- Your goals for treatment.

Have you discussed treatment options with your care team?

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geegeebabe | @geegeebabe | Mar 25 10:49pm
In reply to @deblee "Thank you, Colleen. I am not sure since I have not spoken to my NS yet..." + (show)
@deblee

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 stereotactic radiation 21 years ago for my meningioma. It took time for the tumor to disappear, but over time it did. It still shows on the MRIs for about 5 years, but it was shrinking the entire time. Now it is gone, but I have developed a second one which I am dealing with. This new one was just discovered a few weeks ago, so I haven’t seen a neurosurgeon yet. But non-surgical options can be a better choice. My original doctor didn’t think I’d make it through surgery, so the radiation was my only alternative.

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