GOING FOR PROTON

Feb2010 said:

Kongo
When did you start your treatment?
How is it progressing?

Feb2010 said:

GOING FOR PROTON
After all the consultation and pod fitting, I'm going to start my proton radiation treatment on June 14 at Loma Linda UMC. Wish me luck y'all.

Feb2010 said:

VERY LONG- Short Story
I had my initial consult with LL in May. Based on my Gleason scores and medical history I was told I could actually start treatment as soon as possible. As some of you may already know, a customized pod is made for proton a patient, that’s where we lay down, as still as possible while the technicians are calibrating and "aiming" the proton aperture. I was given a start date of June 2 but I had to decline because of logistics as well as work related reasons. June 14 was then set for me. My wife and I flew in to San Diego on June 12, visited friends and relatives. We arrive in LL Sunday afternoon to a very nice one bedroom apartment/duplex owned by Jimmy Martinez; I sent a deposit and committed with Jimmy over for the lease, and I wasn't disappointed with the setup. Back in May we made a deposit at Centrepoint Apts, but later changed our mind when we found Jimmy’s apts online.

Week 1: Insurance Problem

Prior to flying in, I have been in contact with TRICARE about covering the treatment. I was told that I wouldn't be covered if I go to LL, that I should go proton center in Indiana, I didn't want to go to Indiana. We still flew to Ca, and we were convinced that the matter will be resolved. It wasn't. I was finally told what I needed to do. I was under TRICARE North Region, the reason I wouldn't be covered was LL was under TRICARE WEST. All I have to do is enroll under TRIWEST, get a referral from a primary doctor and wait. Well, I had to do this rather quickly. We drove back to San Diego, went to Balboa Hospital, enrolled in TRIWEST, chose a primary physician, thank God LL was on the list, made an appointment, and, catch my breath, had a referral made and waited, and waited. LL didn't get the authorization from TRIWEST until late that week. New start date, June 25.

It doesn't hurt at all when put in the balloon using a pediatric probe, but to me, that's the part I hate the most. I actually dread it, but, oh well. Positioning and aiming took most of the time I was in the Gantry. Gantry 2's crew was awesome, Tim, Shawn, Joe, Becky, and Luis.
I can't ask for any more professionalism from this crew.

I started getting bouts of fatigue and sleepiness almost at the very start. Proton like photon radiation affects different people differently. By the second week, I had to really watch what I eat. Green and fibrous veggies were out, that was easy. More protein, I was ok with dairy. Diarrhea, bloating, gas are the negative effects when I wasn't careful.

They started me with night treatments, but I requested early mornings, which they were able to accommodate. My daily schedule was wake up at 545, drink at least 18 oz of water; I eat a little piece of bread and drink almost 30 oz of water to fill up the bladder, 30 mins before treatment. My appointments were at 0630, the longest time I had to wait was maybe 30 mins from my appointment time. I really had to pee right after each treatment.

Go in the changing room, take of pants/underwear, put on the stylish hospital gown and chat with the other patients while you wait to be called in. Different people, different ages, sharing a common bond, PC, and we became friends.

45 times. 45 balloons.

By the third week, I started developing radiation burns on both sides of my hips where the proton beam was being aimed; they really turned bright red by the last week of the treatment. They didn't hurt but they look weird.

After treatments, my wife and usually go to the Drayson Center, a fitness facility where I was able to re-acquaint myself in working out. I actually, by choice, stopped working out after I retired from the military. I guess I just got tired of it after 23 years of doing it.
But, I was glad I did it. It was hard trying to get back; the weights were a lot heavier, and the running a lot more laborious. By the second week, it was getting easier, and more fun.

My bouts with fatigue will come out of nowhere, I will be sitting down, all of sudden, I would just feel so worn down, during those times, all I wanted to do was lay down.

Urgency to urinate started on the second week of treatment. Frequency was not a problem, but when I have to urge to pee, I really had to go. The feeling is like you've been holding it for a while and when you have a chance to pee, it kind of hurt before it starts flowing, but then the flow is weak.

Sexual activity was normal throughout the treatment. No restrictions on daily activities except when I'm really feeling tired.

Stress from being in a new place, uncertainties, finances, work, a lot things were playing in my mind during the first two weeks, but they gradually went away. Prayers do work, and God really listens. He was there with us the whole time we were there. He has always been.

The whole experience was one of the best in my life. My family and I made it into our "long overdue" vacation. I was able to re-connect with my old friends, even attended my 30th high school reunion; and made new friends along the way.

The symptoms started going away, the urgency, fatigue, sleepiness; the "burns" started fading.
It has been two weeks from last treatment. My first lab work to check my PSA will be in four months.

This has been a long post. I should have been posting while I was there.
If anyone has any questions, please send them my way.

Like Trew is saying, Proton is not for everyone. It was for me.

Feb2010 said:

VERY LONG- Short Story
I had my initial consult with LL in May. Based on my Gleason scores and medical history I was told I could actually start treatment as soon as possible. As some of you may already know, a customized pod is made for proton a patient, that’s where we lay down, as still as possible while the technicians are calibrating and "aiming" the proton aperture. I was given a start date of June 2 but I had to decline because of logistics as well as work related reasons. June 14 was then set for me. My wife and I flew in to San Diego on June 12, visited friends and relatives. We arrive in LL Sunday afternoon to a very nice one bedroom apartment/duplex owned by Jimmy Martinez; I sent a deposit and committed with Jimmy over for the lease, and I wasn't disappointed with the setup. Back in May we made a deposit at Centrepoint Apts, but later changed our mind when we found Jimmy’s apts online.

Week 1: Insurance Problem

Prior to flying in, I have been in contact with TRICARE about covering the treatment. I was told that I wouldn't be covered if I go to LL, that I should go proton center in Indiana, I didn't want to go to Indiana. We still flew to Ca, and we were convinced that the matter will be resolved. It wasn't. I was finally told what I needed to do. I was under TRICARE North Region, the reason I wouldn't be covered was LL was under TRICARE WEST. All I have to do is enroll under TRIWEST, get a referral from a primary doctor and wait. Well, I had to do this rather quickly. We drove back to San Diego, went to Balboa Hospital, enrolled in TRIWEST, chose a primary physician, thank God LL was on the list, made an appointment, and, catch my breath, had a referral made and waited, and waited. LL didn't get the authorization from TRIWEST until late that week. New start date, June 25.

It doesn't hurt at all when put in the balloon using a pediatric probe, but to me, that's the part I hate the most. I actually dread it, but, oh well. Positioning and aiming took most of the time I was in the Gantry. Gantry 2's crew was awesome, Tim, Shawn, Joe, Becky, and Luis.
I can't ask for any more professionalism from this crew.

I started getting bouts of fatigue and sleepiness almost at the very start. Proton like photon radiation affects different people differently. By the second week, I had to really watch what I eat. Green and fibrous veggies were out, that was easy. More protein, I was ok with dairy. Diarrhea, bloating, gas are the negative effects when I wasn't careful.

They started me with night treatments, but I requested early mornings, which they were able to accommodate. My daily schedule was wake up at 545, drink at least 18 oz of water; I eat a little piece of bread and drink almost 30 oz of water to fill up the bladder, 30 mins before treatment. My appointments were at 0630, the longest time I had to wait was maybe 30 mins from my appointment time. I really had to pee right after each treatment.

Go in the changing room, take of pants/underwear, put on the stylish hospital gown and chat with the other patients while you wait to be called in. Different people, different ages, sharing a common bond, PC, and we became friends.

45 times. 45 balloons.

By the third week, I started developing radiation burns on both sides of my hips where the proton beam was being aimed; they really turned bright red by the last week of the treatment. They didn't hurt but they look weird.

After treatments, my wife and usually go to the Drayson Center, a fitness facility where I was able to re-acquaint myself in working out. I actually, by choice, stopped working out after I retired from the military. I guess I just got tired of it after 23 years of doing it.
But, I was glad I did it. It was hard trying to get back; the weights were a lot heavier, and the running a lot more laborious. By the second week, it was getting easier, and more fun.

My bouts with fatigue will come out of nowhere, I will be sitting down, all of sudden, I would just feel so worn down, during those times, all I wanted to do was lay down.

Urgency to urinate started on the second week of treatment. Frequency was not a problem, but when I have to urge to pee, I really had to go. The feeling is like you've been holding it for a while and when you have a chance to pee, it kind of hurt before it starts flowing, but then the flow is weak.

Sexual activity was normal throughout the treatment. No restrictions on daily activities except when I'm really feeling tired.

Stress from being in a new place, uncertainties, finances, work, a lot things were playing in my mind during the first two weeks, but they gradually went away. Prayers do work, and God really listens. He was there with us the whole time we were there. He has always been.

The whole experience was one of the best in my life. My family and I made it into our "long overdue" vacation. I was able to re-connect with my old friends, even attended my 30th high school reunion; and made new friends along the way.

The symptoms started going away, the urgency, fatigue, sleepiness; the "burns" started fading.
It has been two weeks from last treatment. My first lab work to check my PSA will be in four months.

This has been a long post. I should have been posting while I was there.
If anyone has any questions, please send them my way.

Like Trew is saying, Proton is not for everyone. It was for me.

Trew said:

SSW, One gets use to the balloon pretty quickly and it is actually a bonding experience among patients. You can imagine the comments, perhaps, that such an experience generates, and it is a good diversion from all the cancer stuff around you.

I"m sorry you missed it. LOL