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Experience w/ Proton Therapy?
Old 02-23-2020, 04:02 PM   #1
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Experience w/ Proton Therapy?

Long story short, DW has a spinal tumor that will have to be surgically removed (or debulked since they weren't able to remove it the last two surgeries ) and in the past, radiation wasn't a viable option due to the proximity of the spinal cord. Well, now it looks like they want to do proton therapy (specifically using the pencil beam scanning method) and was curious if any members have experience with this?

The technology (the pencil beam, anyway) is pretty new and there isn't a lot of information that I can find outside of the press releases from the hospitals/clinics/machine manufacturers. We are going out of town for the surgery and while there is a proton therapy practice where we live (also w/ the pencil beam scanning), her surgeon seems to be of the mindset that it needs to be done at the same hospital/organization as where the surgery will be. We aren't too keen on being out of town for almost 3 months, but if it's meant to be...

Anyway, any info would be appreciated!

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Old 02-23-2020, 06:54 PM   #2
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An acquaintance used it for very advanced prostate cancer a number of years ago. He explain he had to go out of town for 6 weeks because I guess they do a little treatment every day. His was successful but when he had it done it was not covered by insurance because the more damaging alternatives were much cheaper. At the time it was very expensive.

I do not know if it is covered by insurance today.

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Old 02-24-2020, 10:03 AM   #3
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I had proton beam for prostrate cancer. Does not weaken you like X-ray radiation. Also the treatment is very constrained to the site of the cancer and does not harm adjacent tissue and organs like X-ray radiation. I went to MD Anderson, but now there are sites across the country. Treatment was daily, Monday-Friday, for eight weeks. At the initial consultation with the head of the proton beam therapy center, he completely explained each of the different treatments and said he could not decide for me. I was sold on proton and it worked for me.
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Old 02-24-2020, 11:14 AM   #4
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Friend used it for prostate cancer. Said it didn't tire him, make him sick, hurt, or anything. He joked that for what he and the insurance was paying, he should have had some pain!! It was successful for him. (a hospital in the Chicago area)

Close relative worked with setting up the nursing protocols for the Proton Beam center at Mayo in Rochester, MN. She is thrilled that they can help so many, but saddened for those who don't make it onto the list....a long list of requirements and at times, a waiting list due to the volume of those already being treated.

Wishing your wife the best.
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Old 02-24-2020, 02:09 PM   #5
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Thanks for all the info, I appreciate it. We have a lot of hope that this will finally be the treatment that will stop this f*ing tumor once and for all. Not sure how many more surgeries she/her spine could endure.
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Old 02-24-2020, 02:10 PM   #6
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I know nothing about it beyond what I've read, but it certainly sounds like a big advance over similar forms of treatment. Best of luck!
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Old 02-25-2020, 12:03 PM   #7
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If my memory is correct. Years ago, I think this procedure started in Japan. Saw a documentary on TV. Then, other "major" cities started to replicate.

Like other posters have mention. The "protons", only "target" the bad cells. Leaving, the healthy good cells alone. (unlike radiation and chemo).

Good luck.
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Old 02-25-2020, 12:40 PM   #8
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I don't know enough to provide any advice, other than to ask if you have evaluated other options? Systems like the "Cyberknife" use many (hundreds?) individual, narrow beams from different angles that are aimed to converge at the point to be treated. Surrounding tissue gets a very low dose, as each individual beam is so low in power.

I don't know if that, or some other system, is applicable to your case, but it might be worth investigating.

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Old 02-25-2020, 01:01 PM   #9
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My BIL finished prostate cancer electron beam therapy about a month ago in Jacksonville. No issues. They live on the West coast of Florida so they relocated during the week for about 10 weeks, I think. He was very positive about the experience and Medicare covered it.

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