1. < Prostate Cancer

Proton Therapy: any long term side effects? Any regrets?

Posted by oskarpr @oskarpr, Jun 13 3:44pm

Anyone who have proton treatment for prostate cancer wanna share his experience?
Any long term side effects.
Any regrets?

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

westernflyer | @westernflyer | Jul 27 10:11am
In reply to @oskarpr "Questions: What is your age? Do you received hormonal treatment prior radiation.? Are cancer free after..." + (show)
@oskarpr

Questions:
What is your age?
Do you received hormonal treatment prior radiation.?
Are cancer free after 14 years
Post PR?
What is your current PSA?
No urinary symptoms in general?
About ED?

Jump to this post

Current as 65
No hormonal treatment before or after
Rising PSA..Possible recurrence..under review now with Loma Linda and possibly Mayo
PSE: 4.29
No urinary issues
No ED issues..none

REPLY
westernflyer | @westernflyer | Jul 27 10:12am
In reply to @oskarpr "Questions: What is your age? Do you received hormonal treatment prior radiation.? Are cancer free after..." + (show)
@oskarpr

Questions:
What is your age?
Do you received hormonal treatment prior radiation.?
Are cancer free after 14 years
Post PR?
What is your current PSA?
No urinary symptoms in general?
About ED?

Jump to this post

replied as westernflyer...

REPLY
ozelli | @ozelli | Jul 29 5:17am

What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person, 63, nothing else going on medically but struggling to open a jar of peanut butter on occasion. Maybe a coincidence or my imagination.

REPLY
2 replies
edpenney | @edpenney | Jul 30 11:19am
In reply to @ozelli "What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person,..." + (show)
@ozelli

What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person, 63, nothing else going on medically but struggling to open a jar of peanut butter on occasion. Maybe a coincidence or my imagination.

Jump to this post

Curious. What was your Gleason score. Will have SBRT in October but on the fence with ADT. I am 4+3, PSA 5.0, contained in prostate yet 6/12 cores 4+3, 3/12 cores 3+4. Mayo and others are suggesting 4 mos. ADT yet with new research that is being debated.

REPLY
1 reply
ozelli | @ozelli | Jul 30 4:58pm
In reply to @edpenney "Curious. What was your Gleason score. Will have SBRT in October but on the fence with..." + (show)
@edpenney

Curious. What was your Gleason score. Will have SBRT in October but on the fence with ADT. I am 4+3, PSA 5.0, contained in prostate yet 6/12 cores 4+3, 3/12 cores 3+4. Mayo and others are suggesting 4 mos. ADT yet with new research that is being debated.

Jump to this post

4+3.
PSA 17.5, contained within prostate (no PSMA scan however). 4 out of 12 cores positive, 3/12 @3+4 and a single core @4+3. Cancer involvement in those cores ranged from 5% to less than 20%.
Our results are similar but also different. My PSA slowly rose over 6 years from 5.75 tp 17.5. Yours is low but that is not necessarily a positive when you have so many cores @4+3.

I was willing to do a short course of ADT if recommended but to my surprise, the doc said it wasn't necessary as studies didn't support it. I didn't debate him on it.
You have 9 out if 12 cores positive so I guess that is why you are being recommended ADT. Not an easy call to make.

Some seem to tolerate it well, others struggle. 4 months is not a long time but you need the right mindset particularly with exercise. If it were me, I would likely do it.

REPLY
grac | @grac | Dec 4 8:36pm
In reply to @michael219 "As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior..." + (show)
@michael219

As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior to this we met with both surgeons and radiation oncologist to determine what we felt was the best course of treatment. After numerous consultations and conflicting advice, we/I made the decision that Proton was the way to go vs. photon radiation or surgery. I had 29 Proton sessions, followed by months of ADT (Orgovyx).
Other than some mild fatigue from the radiation and perhaps some more frequent urination, I had no significant side effects. The worst side-effects came from the ADT pills and they were extreme fatigue with its sister, no energy, weight gain, and a loss of libido. The ADT took my testosterone level from 770 down to 15, which did quite a number of my body. I would not hesitate to strongly suggest Proton instead of the older and traditional Photon radiation. The key is locating the right RO and facility, We live in Florida and Mayo Clinic only offered Proton in MN and AZ, Moffitt in Tampa did not offer it as well, with both saying they'd have it in the coming years (large investment).

Jump to this post

There is a Proton center in Delray Beach, FL.

South Florida Proton Therapy Institute

REPLY
slick64 | @slick64 | Dec 5 4:40am
In reply to @ozelli "What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person,..." + (show)
@ozelli

What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person, 63, nothing else going on medically but struggling to open a jar of peanut butter on occasion. Maybe a coincidence or my imagination.

Jump to this post

Interesting, I had proton therapy 19 months ago and right now I am going thru hell with the same symptoms. The docs can’t figure it out yet. If I ask they say no, not from that. Bullshit. It’s something. Since ending treatment in May ‘23, I have been experiencing a lot of different “issues”, and it’s only because of this site that I’m seeing this, not only myself but others as well. Right now they are looking at carpel tunnel, my x-rays all look clear to me. The biggest issue I have, is not being taken seriously when I ask. I just get a look and “NO”. Well, it’s definitely something. Right now both hands are useless. Can’t use them hardly at all and awaiting more tests.

REPLY
1 reply
westernflyer | @westernflyer | Dec 6 8:24am
In reply to @michael219 "As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior..." + (show)
@michael219

As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior to this we met with both surgeons and radiation oncologist to determine what we felt was the best course of treatment. After numerous consultations and conflicting advice, we/I made the decision that Proton was the way to go vs. photon radiation or surgery. I had 29 Proton sessions, followed by months of ADT (Orgovyx).
Other than some mild fatigue from the radiation and perhaps some more frequent urination, I had no significant side effects. The worst side-effects came from the ADT pills and they were extreme fatigue with its sister, no energy, weight gain, and a loss of libido. The ADT took my testosterone level from 770 down to 15, which did quite a number of my body. I would not hesitate to strongly suggest Proton instead of the older and traditional Photon radiation. The key is locating the right RO and facility, We live in Florida and Mayo Clinic only offered Proton in MN and AZ, Moffitt in Tampa did not offer it as well, with both saying they'd have it in the coming years (large investment).

Jump to this post

Happened to view this today, 6 December. I had 2.5 months of proton radiation therapy at Loma Linda in 2010. PSA: 6.47; Gleason 3 plus 3. Localized slow growth cancer confined to one location. Yes, usually by Friday felt somewhat tired, but normally each lunch I played racquetball at the base gym having stayed at March AFB about 25 miles away from Loma Linda.

No other treatment. But, about 2018, my PSA began to rise now at about 4.0 which is cause for concern and possible recurrence. I had MRI recently and the result was not confirmed. Absolutely no other issues..everything is normal. PSA tests now every six months. Just have to see the velocity and other aspects to determine what next to do, if any. I have TriCare as retired Army, so I can go anywhere. But, if there is a next step, will head north two hours to Mayo. Go luck. RH/Leesburg, Fl

REPLY
5galloncan | @5galloncan | Dec 7 8:08am
In reply to @slick64 "Interesting, I had proton therapy 19 months ago and right now I am going thru hell..." + (show)
@slick64

Interesting, I had proton therapy 19 months ago and right now I am going thru hell with the same symptoms. The docs can’t figure it out yet. If I ask they say no, not from that. Bullshit. It’s something. Since ending treatment in May ‘23, I have been experiencing a lot of different “issues”, and it’s only because of this site that I’m seeing this, not only myself but others as well. Right now they are looking at carpel tunnel, my x-rays all look clear to me. The biggest issue I have, is not being taken seriously when I ask. I just get a look and “NO”. Well, it’s definitely something. Right now both hands are useless. Can’t use them hardly at all and awaiting more tests.

Jump to this post

I had proton therapy at UFHPTI in March/April of this year. The only issue related to hands that I experienced was that both of my hands suddenly cramped and turned into useless claws when I was driving home. I've never had my hands cramp like that before and am not sure what, if anything, proton therapy has to do with it other than I was drinking a lot more water than usual during treatment. To alleviate the cramping and restore the use of my hands, I ate some salt. This is something I've learned to do with leg cramps in the past. I start with a quarter teaspoon of salt and chase it with some water. With me, the cramps go away almost immediately. And I know to take some electrolytes as soon as possible and so carry Medi-Lyte(R) packets, each which contains two little pills consisting of small amounts of Calcium, Potassium and Magnesium. Now I also carry a bottle of Sodium Chloride (salt) 1 gram tablets for emergencies. This takes care of the muscle cramping. The only other issue I'm experiencing is I walk slower and notice both hips are fatigued on long walks. I attribute this to the proton beams shooting in through my hips on each side for 29 sessions. Bike riding is fine, so I do that more than even thinking of going on hour long walks anymore.

REPLY
View MoreView Less
Please sign in or register to post a reply.