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The ABC Café  |  Public Forum: Dealing with Bone Cancer  |  Diagnosis and Treatment  |  Topic: Proton beam radiation therapy « previous next »
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Mary
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« on: December 31, 2005, 09:43:55 PM »

Proton beam therapy can be used in bone tumor cases where other types of radiation might cause too much damage to surrounding tissue (spine, brain). It can be used in pediatric cases and in cases where further surgery is not an option. And I was recently told that some of these centers will even use proton beam on a large, single lung met. Patients often need to look into this option on their own, because many doctors are not familiar with proton beam and its potential. Proton beam centers will accept calls from patients, ask a series of questions about their case, and let them know if they may qualify for the therapy. There are only a few centers in the country. The technology is very expensive, so it doesn't always pay to create more of these centers. Even if the center is located far from you, it is worth a phone call to discuss the therapy if you are running low on options.

Read more about proton beam therapy here, here and here. Here is a newspaper article about proton beam therapy.

Here is a site where you can find the center nearest you.
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Mary, ABC Founder, Parosteal Osteosarcoma Survivor - Humerus Resection 12/03, no chemo
*I am not a doctor. Nothing in this message is medical advice. Please consult your physician.*
Mary
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« Reply #1 on: August 11, 2006, 09:26:18 AM »

This UK article makes a couple of interesting points:

There is no proton beam therapy available in the UK. So it's important for skull patients to know that proton beam therapy is available in the US (and elsewhere) and that their health insurance in the UK will pay for it.

Proton beam therapy has a 98% success rate with skull base chondrosarcoma patients treated at Massachusettes General. I'm not sure what their definition of success is, but that is a great number!

Not all surgeons know about proton beam therapy and its success with bone and brain tumors. So if you think proton therapy may help you, you can actually call the proton beam center nearest you and ask for information.
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Mary, ABC Founder, Parosteal Osteosarcoma Survivor - Humerus Resection 12/03, no chemo
*I am not a doctor. Nothing in this message is medical advice. Please consult your physician.*
Mary
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« Reply #2 on: January 11, 2007, 12:14:00 PM »

Below is my exchange with Dr. Pete Anderson (at MD Anderson Cancer Center) about this article and the effect of proton beam radiation on osteosarcoma:

-------- Original Message --------
Subject: Re: 4Mary from Pete
Date: Tue, 09 Jan 2007 21:40:53 -0500

Hi Dr. Pete,

I have a question. I was just reading the online article about Sabeen Khan, and they quoted you as saying:

"Radiation, contrary to dogma, is effective (in treating osteosarcoma). We have known that since the '90s," he said. "It has worked, and as long as the scans stay this way, we have a good chance of beating it."

I have heard of radiation (traditional and proton beam) being used in conjunction with osteosarcoma resection, but everything that I've read says that there is virtually no chance of survival without complete surgical removal of osteosarcoma tumors. Has something changed? Any comments you could share would be of great interest to members of my group.

Thanks so much,
Mary


-------- Original Message --------
Subject: Re: 4Mary from Pete
Date: Thu, 11 Jan 2007 06:23:11 EST

Radiation therapy when given with chemotherapy is effective.

We are seeing about 75% local control for lesions (even big ones) irradiated during chemo and left in place. This is not standard- usually surgery is preferred, but for some locations (sacrum, pelvis, spine) and situations (many mets), this is the second best option.

Chemo alone is not enough.

Pete
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Mary, ABC Founder, Parosteal Osteosarcoma Survivor - Humerus Resection 12/03, no chemo
*I am not a doctor. Nothing in this message is medical advice. Please consult your physician.*
Michelle
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« Reply #3 on: January 27, 2007, 07:08:25 PM »

I will say that the proton beam radiation was effective in Chris' treatment.  As you know Mary, I freaked out when they said they did not want to go in and get the two one inch tumors.....I too know (believe) that there is NO chance really without complete resection.

Back to Chris' situation.  Why I say the proton beam radiation was effective is that we were quite sure that those two tumors were dead.  He passed away from a HUGE mass in his abdomin.  Of course hind sight is 20/20 so they say.  They completely stopped Chris' chemo weeks before his radiation.  I believe this was a mistake.  He never got through the standard course of treatment before this local recurrance....I believe that had they continued the chemo ALONG with the radiation....that we might have had more time.

When you allow time to pass without treating the microscopic evidence in the bloodstream....it could take hold anywhere.  Radiation ONLY treats the immediate problematic tumor---it does nothing for the microscopic stuff in the bloodstream.

Soooooooooooooo....just some personal insights.

Michelle
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Michelle
Spouse of Chris
Osteosarcoma, primary tumor in the HEART
Deceased RIP 6/3/68-8/13/06
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The ABC Café  |  Public Forum: Dealing with Bone Cancer  |  Diagnosis and Treatment  |  Topic: Proton beam radiation therapy « previous next »
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