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Meeting up with others who are having Proton Treatment

Posted by dandl48 Dave @dandl48, Sep 15, 2020

My wife and I had a very pleasant afternoon when we met up with 2 other men who are undergoing radiation treatment at roughly the same time as me. I met one of the men on this forum and the other was staying at the same place as the first. We exchanged our thought processes in choosing what treatment we picked, any "Buyer's Remorse" after choosing radiation and just talked about life in general. It was a very calming day and I hope to meet up with them again. I start SBRT on Thursday while the other man started his yesterday. Why did I post this? It's because the meeting of men in a similar boat away from Mayo relaxed me and reassured me that my choice was the correct one. This can help you also.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

ava11 | @ava11 | Mar 24 9:02pm
In reply to @jc76 "@ava11 It is not MRI guided proton treatment but MRI of prostrate to align radiation treatments...." + (show)
@jc76

@ava11 It is not MRI guided proton treatment but MRI of prostrate to align radiation treatments.

What I had was a low dose xray that looked at my gold markers put into my prostrate. This allowed the radiation treattment tech to align the proton device to target the radiation to the prostrate. And many times they did adjust my position and proton device to align with the prostrate parameters.

When they move the proton gantry to the other side of my body (this is done with gantry moving over you) they again do an xray to make sure the prostrate and body position is correct for the parameters for treatment. The xray is not on during treatments but before and after. The prostrate can move from one treatment to another and even between the left entry and right entry time proton radiation is being done.

What my post referred to was instead of using a low dose xray the poster was saying their check and adjust were done using a MRI to set up the paramaters for the proton treatment.

I cannot have a MRI to set up my parameters each time as I have a ICD/Pacemaker and have to take special precautions when having an MRI. I did have a MRI when doing MRI of prostrate to determine suspicious areas. In that case they turned off my pacing of my ICD/Pacemaker. Even doing the lose dose xray and proton radiation they required me to get a check of my ICD/Pacemaker once a week and send results to them to determine any interference with ICD/Pacemaker from the radiation I was getting.

Hope that answered. I have read that some photon (not proton) radiation uses MRI guided during the treatments but have not seen a specific one that mentioned proton. Don't know if out there but sure would be a plus if it were for those unlike me with a AICD/Pacemaker.

Jump to this post

I understand. Thank you very much!

REPLY
gently | @gently | Mar 25 3:11am
In reply to @ava11 "jc76, can you point out the post about MRI guided Proton Treatment? That would like MRILinac..." + (show)
@ava11

jc76,
can you point out the post about MRI guided Proton Treatment? That would like MRILinac techonology? I didn't know any proton center that has the techonology.

Jump to this post

The technology doesn't exist commercially. An international group of researchers are working on it in Dresden. https://www.auntminnie.com/clinical-news/radiation-oncology-therapy/article/15661868/international-researchers-begin-testing-new-mriguided-proton-therapy

REPLY
ava11 | @ava11 | Mar 25 9:50am
In reply to @jc76 "@ava11 It is not MRI guided proton treatment but MRI of prostrate to align radiation treatments...." + (show)
@jc76

@ava11 It is not MRI guided proton treatment but MRI of prostrate to align radiation treatments.

What I had was a low dose xray that looked at my gold markers put into my prostrate. This allowed the radiation treattment tech to align the proton device to target the radiation to the prostrate. And many times they did adjust my position and proton device to align with the prostrate parameters.

When they move the proton gantry to the other side of my body (this is done with gantry moving over you) they again do an xray to make sure the prostrate and body position is correct for the parameters for treatment. The xray is not on during treatments but before and after. The prostrate can move from one treatment to another and even between the left entry and right entry time proton radiation is being done.

What my post referred to was instead of using a low dose xray the poster was saying their check and adjust were done using a MRI to set up the paramaters for the proton treatment.

I cannot have a MRI to set up my parameters each time as I have a ICD/Pacemaker and have to take special precautions when having an MRI. I did have a MRI when doing MRI of prostrate to determine suspicious areas. In that case they turned off my pacing of my ICD/Pacemaker. Even doing the lose dose xray and proton radiation they required me to get a check of my ICD/Pacemaker once a week and send results to them to determine any interference with ICD/Pacemaker from the radiation I was getting.

Hope that answered. I have read that some photon (not proton) radiation uses MRI guided during the treatments but have not seen a specific one that mentioned proton. Don't know if out there but sure would be a plus if it were for those unlike me with a AICD/Pacemaker.

Jump to this post

Thank you for your reply!

REPLY
gently | @gently | Mar 25 7:26pm

At CA Proton one of the local patients from years ago and his wife organize monthly get togethers at various local restaurants. Sometimes there will be 20 or 30 patients. Most are prostate cancer patients and their side kicks. It's a wonderful way to gain confidence, share gossip and just have a good time.

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