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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@rsfcowgirl

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.

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Thank you for your detailed information, and I am glad to hear that you have had restoration of important functions. So, I understand that you did have some significant effects from proton beam radiation despite the fact that is less invasive?

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@colom22

Thank you for your detailed information, and I am glad to hear that you have had restoration of important functions. So, I understand that you did have some significant effects from proton beam radiation despite the fact that is less invasive?

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Incorrect. You may have been reading a different person's post. I DID NOT have proton Beam therapy. I've not have any treatment other than steroids for cerebral edema at the tumor site. My personal research is the only information I posted about. I read legitimate medical sources. Please review my posts for details.

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@rsfcowgirl

Incorrect. You may have been reading a different person's post. I DID NOT have proton Beam therapy. I've not have any treatment other than steroids for cerebral edema at the tumor site. My personal research is the only information I posted about. I read legitimate medical sources. Please review my posts for details.

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Apologies for the confusion. I meant to reply to a different person's posting. Thank you for sharing the information you found.

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I'm very interested to know, also, of anyone who has experienced proton therapy for eradication of meningiomas. Anyone out there who can comment on this with expertise?

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@cscmaryann

I'm very interested to know, also, of anyone who has experienced proton therapy for eradication of meningiomas. Anyone out there who can comment on this with expertise?

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You can research this yourself to find the highest expertise: what is publish about this. You can even call any Proton Beam Therapy center and ask them if they even offer this for eradication of any meningioma tumors. You'll find your answer "with expertise" that is definitive.

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@rsfcowgirl

You can research this yourself to find the highest expertise: what is publish about this. You can even call any Proton Beam Therapy center and ask them if they even offer this for eradication of any meningioma tumors. You'll find your answer "with expertise" that is definitive.

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Thank you. I am researching various sites now.

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@cscmaryann

I'm very interested to know, also, of anyone who has experienced proton therapy for eradication of meningiomas. Anyone out there who can comment on this with expertise?

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Hello,

I had proton beam radiation therapy to minimize my meningioma. It was provided to me this February through early March 2023. 15 treatments were the total they provided for me.

Mine was the size of my hand and it had its third regrowth in 4 1/2 years. I have a stage 1 with a fourth grade, a high proliferation index. It was shared this did become “brain cancer” with its third regrowth.

So far, it has been working well with some modifications to this treatment. I’ve had to stay on steroids for now and Avastin (it kills the blood supply to the tumor) for a chemotherapy infusion. My meningioma did shrink in size though! Even with having to take several trips to the local ER with nausea and vomiting this summer. I can say it’s worked out for me so far. Especially with the steroids and Avastin treatments.

I hope as you move forward, this could be a successful outcome for you. Let me know if you have any questions.

Take care,
Jenny

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I'm currently having proton bean radiation for my meningioma tumor grade 2. After a second opinion and my own research, I decided to go with this option. Can't tell about results as I just have done 3 sessions/30 total and all is going great. I'm a health care provider so have access to the Pubmed library through my work. The more educated you are about this, the better you can make decisions. To address your question, proton beam does not "eradicate" the tumor. The purpose of its to put the tumor in remission for some years, hopefully several. This radiation stops the tumor from growing but it doesn't eliminate it. By disrupting the growth, hopefully patients will enjoy some years with quality of life but still being followed periodically depending on each person's protocol. If is very localized, so the risk of damaging surrounding tissue is likely less than that of conventional radiation, however, more research is being done to see if there is significant difference between proton beam and conventional radiation. What my doctors explained to me, is very in line with what I have read in some studies. Every case and tumor are different, so no one treatment fits all. Treatments are personalized for each patient depending on their condition, grade of tumor, location, age of the patient, general health condition, and availability of this equipment. I found many useful comments in this support group, so I'm absolutely committed to reciprocate as I navigate my own experience. Best of luck in your journey!

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@jgboyle

Hello,

I had proton beam radiation therapy to minimize my meningioma. It was provided to me this February through early March 2023. 15 treatments were the total they provided for me.

Mine was the size of my hand and it had its third regrowth in 4 1/2 years. I have a stage 1 with a fourth grade, a high proliferation index. It was shared this did become “brain cancer” with its third regrowth.

So far, it has been working well with some modifications to this treatment. I’ve had to stay on steroids for now and Avastin (it kills the blood supply to the tumor) for a chemotherapy infusion. My meningioma did shrink in size though! Even with having to take several trips to the local ER with nausea and vomiting this summer. I can say it’s worked out for me so far. Especially with the steroids and Avastin treatments.

I hope as you move forward, this could be a successful outcome for you. Let me know if you have any questions.

Take care,
Jenny

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Thank you so much for your input, Jenny. I am waiting to hear if I'm a candidate for proton therapy. In the meantime, I've had a second emergency surgery to deal with an infection that developed on the outer area of my skull from my Aug 1 craniotomy. Waiting to see what MRI and surgeon explains about new findings.

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@cscmaryann

Thank you so much for your input, Jenny. I am waiting to hear if I'm a candidate for proton therapy. In the meantime, I've had a second emergency surgery to deal with an infection that developed on the outer area of my skull from my Aug 1 craniotomy. Waiting to see what MRI and surgeon explains about new findings.

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Hopefully, you will get a great reply about your infection and MRI soon. They are challenging to live through that time frame. I had three extra surgical procedures, over the next several months, after my attempt to remove the meningioma tumor was aborted/stopped. It was a challenge to live through them, but I was able to make it through them.

It would be great to not to have to have another one anytime soon! Here is to new findings for you and I hope you are able to maintain with in your limits they offer for you to heal.
Take Care, Jenny

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