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.

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.

REPLY
@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
@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
@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
@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

@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.

REPLY
@jc76

needsadvice,
All depends on what treatment is designed for you. If your team wants to do prior implanted Space/Oar you will not have to have a balloon inserted prior to treatments which causes more time before treatment starts.

If you team wants prior implanted markers then those are used each time to align proton beam therapy. I read one post about MRI Proton where markers were not used but real time MRI monitoring and if prostrate moves machine shuts down. This would cause a delay in treatment also.

I even read one post with an enema before treatments. I never had to do that. I did prior to some of the tests done but not during treatments.

Your team may recommend high dose which is 5 treatments or low dose which can be 20-40 treatments (mine was 30). I did 5 treatments a week for 6 weeks. I am told the high dose is 3 days one week and 2 days the next. Probably time of treatments is around 10 minutes but that depends on each individual and their treatment plan.

How much time? All depends on the preps. My procedure was very fast. Laid on a special bed that was made specifically for me to keep me in same position each time. Then a low dose xray to look at markers and adjust table as needed. Then the treatments which last around 10 minutes. The total time I was on table was around 15 minutes. There was one time I was told I had gas and had moved prostrate (it will move around) and had to adjust table.

I drank water before hand to move away bladder. I hope this information helps. All that would be explained by your oncologist/radiologist and if not go somewhere else for treatments.

Jump to this post

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.

REPLY

gently,
I am very impressed with Kishan. He explained SBRT treatment on MRILinac machine and the accuracy of radiation delivery to a moving target. They took a mouth swab to make sure I am eligible for SBRT.
I will be talking to Dr Rossi in few days. It will be either Rossi or Kishan for me.
Thank you for your support and others on this group.

REPLY

Avall, I was there in 2017 for rectal cancer. How was your exchange with Kishan today?

REPLY

anyone has experience with California Proton Treatment center in San Diego?

REPLY
@ncworried

Hi, I’ve been diagnosed with ocular melanoma and I have to decide whether to have the eye removed (enucleation) or opt for proton beam Radiotherapy. I would prefer to keep my eye but worried about recurrence of melanoma. Anybody have experience of either treatment.
I really would appreciate any help you can provide.

Jump to this post

Welcome, @ncworried. You may wish to connect with other members who are talking about ocular melanoma in these discussions:
- Malignant melanoma of the choroid in the eye
https://connect.mayoclinic.org/discussion/malignant-melanoma-of-the-choroid-in-the-eye/

- Melanoma of the eye: What helps with pain?
https://connect.mayoclinic.org/discussion/melanoma-of-the-eye/

REPLY
Please sign in or register to post a reply.