GOING FOR PROTON

2

Comments

  • Trew
    Trew Member Posts: 932 Member
    Kongo said:

    Novalis
    Ira, I was unable to make it over to Alvarado yesterday as we had some family in town. The Novalis clinical trial is sponsored by San Diego Radiosurgery at Palomar Hospital in Encinitas. The Website is http://www.clinicaltrial.gov/ct2/show/NCT00969202?term=novalis&rank=1. I spoke with Laura Bauchert and told me that I was a candidate for this trial and we have a consult scheduled later this month. I thought I'd read that UCLA was also part of the trial but couldn't find that web reference.

    I share your concerns about its newness but Stanford, UCLA, Harvard, Duke and other medical centers seem to be embracing it full force. Interstingly the inventor and founder of the Cyberknife procedure announced last month that he was leaving the company and going to the company that builds Novalis.

    The eligibility requirements are:

    Ages Eligible for Study: 18 Years and older
    Genders Eligible for Study: Male
    Accepts Healthy Volunteers: No

    Criteria

    Inclusion Criteria:
    Histologically confirmed adenocarcinoma of the prostate
    Gleason score ≤ 6 and low volume Gleason 7 (3+4)
    PSA < 10
    Clinical Stage of T2a or less
    Ability to understand and the willingness to sign a written informed consent document

    Exclusion Criteria:
    Prior radiation treatment for prostate cancer
    Gleason score > 7
    PSA > 10
    Clinical Stage of T2b or greater


    Other websites I found useful:

    http://www.novalistxradiosurgery.com/
    http://www.irsa.org/Novalis.html
    http://www.medicalnewstoday.com/articles/122391.php
    http://radonc.ucla.edu/body.cfm?id=76

    Interesting Stuff
    Too late for me on all points. Important thing is to act while those lab numbers are still relatively low. I am sorry every day my PSA was not being checked by my family doc. Oh well, so it goes sometimes.

    Good info, though.
  • Feb2010
    Feb2010 Member Posts: 51
    Kongo said:

    Feb 2010
    I have a consult with Loma Linda in a few weeks. If I decide to go forward with proton, I'll look forward to playing some golf with you during the treatment. From you reference to Portsmouth Naval Hospital, I'm guessing you're retired Navy. Me too. We can swap some sea stories and other lies about how good we were back in the "real" Navy.

    Sea Stories
    Who knows, I might see you there. Good luck brother.
  • Feb2010
    Feb2010 Member Posts: 51

    Loma Linda Consult Pending Too
    I just heard from Loma Linda a couple of days ago and I've been "cleared" for a cash (out of pocket) consultation. The consult hasn't been scheduled yet, but will probably be in the 2nd week of June.

    Haven't decided on whether to go w/Proton Beam Therapy yet or not, but I'm now in the system and am good to go as a cash patient if Blue Shield (which I am switching to from Kaiser) will pay for it. Not certain whether Blue Shield will pay for Proton Beam Thearpy or not, but there is NO question that Kaiser will NOT pay for it.

    I'm still also considering CyberKnife treatment at UCSF and have a cash consultation pending there on April 20th. After that, I'm going on vacation and will be doing some off-roading in the mountains and deserts of UT, CO and AZ.

    Life is too short not to enjoy it. :)

    Life is Good, Life is too short not to enjoy it.
    Have fun Swingshift!!!
  • Feb2010
    Feb2010 Member Posts: 51
    Feb2010 said:

    Sea Stories
    Who knows, I might see you there. Good luck brother.

    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
    Feb2010 Member Posts: 51
    Kongo said:

    Feb 2010
    I have a consult with Loma Linda in a few weeks. If I decide to go forward with proton, I'll look forward to playing some golf with you during the treatment. From you reference to Portsmouth Naval Hospital, I'm guessing you're retired Navy. Me too. We can swap some sea stories and other lies about how good we were back in the "real" Navy.

    Kongo
    When did you start your treatment?
    How is it progressing?
  • Kongo
    Kongo Member Posts: 1,166 Member
    Feb2010 said:

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

    Feb
    Feb, I elected to get treatment using Cyberknife instead of protons at Loma Linda. I felt the Loma Linda group was extremely professional, highly knowledgable, and generally outstanding. I just felt that I could get where I needed to be better with Cyberknife and am in the prepartory stages for that treatment now. Loma Linda became my backup plan.

    Best of luck with your stay at Loma Linda. I'm sure you will have a great experience.
  • 142
    142 Member Posts: 169
    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.

    Proton
    Feb,
    A decision well-considered deserves our support and best wishes. Report back, please.

    (I was too far "down the road" for proton as a primary treatment, but seriously considered it).
  • Trew
    Trew Member Posts: 932 Member
    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.

    I wish with all my might my
    I wish with all my might my PC was caught soon enough and I could have avoided surgery and gone with the proton. I enjoyed LLU- thought the staff was great. I wish you luck. You will soon be a part of the BoB.
  • drbrr
    drbrr Member Posts: 3
    Kongo said:

    Feb
    Feb, I elected to get treatment using Cyberknife instead of protons at Loma Linda. I felt the Loma Linda group was extremely professional, highly knowledgable, and generally outstanding. I just felt that I could get where I needed to be better with Cyberknife and am in the prepartory stages for that treatment now. Loma Linda became my backup plan.

    Best of luck with your stay at Loma Linda. I'm sure you will have a great experience.

    UF
    I did my proton therapy in the summer of '08 at UF Jacksonville. The wait at LL was far too long, and frankly I wanted the newer equipment. Most all the places are equally good. My experience at JAX was extremely positive. We loved Jacksonville, and the center was one of the most positive places I've ever been in.
  • Feb2010
    Feb2010 Member Posts: 51
    drbrr said:

    UF
    I did my proton therapy in the summer of '08 at UF Jacksonville. The wait at LL was far too long, and frankly I wanted the newer equipment. Most all the places are equally good. My experience at JAX was extremely positive. We loved Jacksonville, and the center was one of the most positive places I've ever been in.

    drbrr
    How did it go? You're almost in your one year anniversary.
  • Trew
    Trew Member Posts: 932 Member
    Any Updates?
    Feb, how is it going? I'm looking forward to an update on your treatment.
  • Feb2010
    Feb2010 Member Posts: 51
    Trew said:

    Any Updates?
    Feb, how is it going? I'm looking forward to an update on your treatment.

    UPDATES
    I apologize for not posting much sooner. My treatment ended last August 25 and I am now back at work. I will post more updates about the procedure and my experience at Loma Linda after work. But, real quick, it was a very positive experience. I know it's not for everyone but, it is something that is truly worth checking into. More later...
  • Trew
    Trew Member Posts: 932 Member
    Feb2010 said:

    UPDATES
    I apologize for not posting much sooner. My treatment ended last August 25 and I am now back at work. I will post more updates about the procedure and my experience at Loma Linda after work. But, real quick, it was a very positive experience. I know it's not for everyone but, it is something that is truly worth checking into. More later...

    I have been wondering how
    I have been wondering how treatment went with you. Please, share the details, what gantry where you in, and how did you like the balloon? LOL! I can share that with you.

    I can't wait to hear your LLU story.
  • Feb2010
    Feb2010 Member Posts: 51
    Trew said:

    I have been wondering how
    I have been wondering how treatment went with you. Please, share the details, what gantry where you in, and how did you like the balloon? LOL! I can share that with you.

    I can't wait to hear your LLU story.

    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
    Trew Member Posts: 932 Member
    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.

    good report. the gantry
    good report. the gantry crews are all great. nancy, in Gantry 3 started my 15th and last treatment before I went over to "the dark side" as they referred to external radiation with this comment as she prepared to put the balloon in: "This is my last chance to have my way with you!" It was funny, I laughed the balloon was inserted and in a few minutes I was done with my last treatment. The next 25 treatments were the tuff ones for me.

    And holding that water was tuff for me, too. since surgery I only had a limited holding capacity and when that limit was reached, I would have to go NOW and the whole department really worked well with me.

    So who was your attending LLU doctor? I had Dr. Rossi.
  • Trew
    Trew Member Posts: 932 Member
    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.

    good report. the gantry
    See my next post- this was an opps!
  • georgeireton
    georgeireton Member Posts: 1
    Trew said:

    good report. the gantry
    good report. the gantry crews are all great. nancy, in Gantry 3 started my 15th and last treatment before I went over to "the dark side" as they referred to external radiation with this comment as she prepared to put the balloon in: "This is my last chance to have my way with you!" It was funny, I laughed the balloon was inserted and in a few minutes I was done with my last treatment. The next 25 treatments were the tuff ones for me.

    And holding that water was tuff for me, too. since surgery I only had a limited holding capacity and when that limit was reached, I would have to go NOW and the whole department really worked well with me.

    So who was your attending LLU doctor? I had Dr. Rossi.

    Hang Tough!
    I am coming to LLUMC from Northern Calif on Monday. This will be my annual inspection. I did 20 trips to the gantry last August. PSA started at 6.8, now 1.4! No side effects. No problems. Take it easy Trew. You are not there by accident. God has a hand in this! I am now involved in the Cancer Relay For Life in my town. I am the online chair. Our team theme is MASH! See: http://main.acsevents.org/goto/mash We will raise $4077 this year. Get it? MASH 4077? Heh.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    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.

    Hope it works out for you!
    The 45 day and 45 balloons was one of the reasons I chose CyberKnife over Proton Beam Therapy -- not the only reason, but one of a critical few.

    That said, it was my 2nd choice and heard generally good things about it. Hope it all works out for you in the end.

    Good luck!
  • Trew
    Trew Member Posts: 932 Member

    Hope it works out for you!
    The 45 day and 45 balloons was one of the reasons I chose CyberKnife over Proton Beam Therapy -- not the only reason, but one of a critical few.

    That said, it was my 2nd choice and heard generally good things about it. Hope it all works out for you in the end.

    Good luck!

    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
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    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

    Brotherhood of trhe Balloon (BOB)
    I read Robert Marckini's book and learned about BOB from it. I'm sure you and all of the members of BOB are GREAT guys, but frankly there are other ways that I'd prefer to bond w/you.

    Having PCa in common is bad enough, but basing a relationship on the fact that you all have had a balloon stuck up your behind 40-45 times while being zapped w/protons while encased in a body cast just isn't what I have in mind when I think of "male bonding" and, I for one, am not sorry that I missed it.

    ROTFLMAO!!!