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Posted 6/24/2011 11:37 PM (GMT 0)
As I move swiftly down the path to choosing treatment, Proton sounds very positive. My neighbor had t three years ago, and he remains the distance-running coach at a local high school. At 63 he can still outrun a lot of his team, and can do 5Ks in the very low 20s, whereas my best efforts barely beat 30 minutes. In other words, he's doing great. On top of that, I live 10 miles from Loma Linda and have heard nothing but positives.

I would GREATLY APPRECIATE hearing from any proton patients who might help me finalize my decision, as I'm anxious to get things under way. My email is there with my user name info, and of course a reply to this thread will get read very soon, also!

My best to every one of you - and thank you for any replies in advance!
Posted 6/25/2011 12:07 PM (GMT 0)
Leroy,

I found this info when I was considering various options. I am not sure if Gene's Journey is still posted, but Protonpals is a wealth of information.

On 9/6/2010 10:08 AM, Eugene Asken wrote: "The Odyssey" is posted at the following URL:
______________________________________________________________
http://protonpals.net/wp-content/uploads/2010/03/a-patients-odyssey.pdf

It's a narrative that I wrote from week to week as a way to keep family and friends advised of my progress while under treatment at MD Anderson.  It has since become a public document published by the Protonpals group for the insight it may provide to others who are seeking a roadway for their own personal journey.  It may be more than you'll want to know about me and my experiences while under treatment, but I'm hopeful you will find some tidbits along the way that may be useful in setting your own direction.
______________________________

Posted 6/27/2011 2:27 AM (GMT 0)
Not sure if you've seen this site, but it's one of the biggest proton sites around

http://www.protonbob.com/proton-treatment-homepage.asp

I recently elected to have PBT at UPenn, and go for my marker placement in a few weeks. Hopefully I'll be in treatment by end of July.

Best of luck in your decision.
Posted 6/27/2011 2:39 AM (GMT 0)
Yes - I've been on that site numerous times. I just found out today that UPenn did the proton treatments. I used to live in Cherry Hill, NJ - so that's familiar territory for me. Wishing you only the best.

I have an appt with Loma Linda on Thursday to evaluate. If you ever want to email, my address is there with my info.

Thanks for replying to my post!
Posted 6/27/2011 9:54 AM (GMT 0)
Leroy, best of luck with your decision to go the proton route. I think it is a wise choice. I am awaiting an insurance appeal to go to IU at Bloomington for proton treatment. Hopefully I will be able to join you as a "proton pal" shortly.

Steve
Posted 6/27/2011 12:36 PM (GMT 0)
My best to you Skeeter. Good luck with your insurance. It's an extra fight that no one needs to be faced with. Keep the faith!
Posted 6/27/2011 12:51 PM (GMT 0)
Leroy...Good luck to you on your journey. I did not have Proton (My insurance denied) but my Dad had Proton at Loma Linda back in late summer 1997. He was Gleason 6 and is still doing well today with no recuurance. He turns 78 in august. His experience was very positive. Only side effects were very frequent urination during treatment, tiredness and some mucus discharge with bowel movements. After several years he lost the ability for erections and has chosen not to treat with anything. He did try pills for a short time but didn't like the headaches they gave him. My brother in law works at Loma Linda Hospital in the computer area and my Daughter is actually starting medical school at Loma Linda in Early August.

lewvino (davinci)
Posted 6/27/2011 1:01 PM (GMT 0)
Lewvino - thanks for that input, good to hear. My best to your father, for a continued success. It looks like your surgery worked well for you, keep those numbers coming! Feel free to give your dad my email if he has the time to write, and congrats on your daughter's med school entry.
Posted 6/28/2011 2:09 AM (GMT 0)
When I first joined this forum 5 years ago Proton was the "big thing".  Several people paid the big bucks and had pretty good results.  Since that time other less expensive treatments have shown they are as effective as proton.

Remember treating cancer is a big business.  Things change all the time.  I have been told...'that proton is no more effective than many LESS EXPENSIVE alternatives'.

I don't know if that is true, but please check things out and don't pay more if it is not necessary.

Posted 6/28/2011 2:38 AM (GMT 0)
I'm not sure if proton is argued as more effective, I think it's argued as a treatment with less side effects than the frequently often cited photon radiation.
Posted 6/28/2011 10:16 AM (GMT 0)

Squirm said...
I'm not sure if proton is argued as more effective, I think it's argued as a treatment with less side effects than the frequently often cited photon radiation.

Exactly. I have researched this to the extreme. The primary benefit of proton over photon radiation is the ability to lessen damage to surrounding healthy tissue, and therefore fewer side effects. As far as "killing" the cancer, both proton and photon radiation are equally effective.

The newer methods of delivering photon radiation have apparently improved their ability to lessen tissue damage, but I do not believe they are at the level of proton treatment.
Posted 6/29/2011 4:17 AM (GMT 0)

SkeeterZX22v said...

Squirm said...
I'm not sure if proton is argued as more effective, I think it's argued as a treatment with less side effects than the frequently often cited photon radiation.

Exactly. I have researched this to the extreme. The primary benefit of proton over photon radiation is the ability to lessen damage to surrounding healthy tissue, and therefore fewer side effects. As far as "killing" the cancer, both proton and photon radiation are equally effective.

The newer methods of delivering photon radiation have apparently improved their ability to lessen tissue damage, but I do not believe they are at the level of proton treatment.

Hi
Proton technology is advancing too. I believe there is a new proton facility that is in operation and offering Image Modulated Proton Therapy, IMPT, (I believe it's also called pencil beam). Nevertheless, it's good to see treatment advancing in both fields.

I've been doing some researching myself, after my dad died of prostate cancer. It appears (and I use that term very loosely) that many men who have had proton are very happy with their treatment. Although I have nothing substantial to back that claim up, only anecdotal observations over a period of about four years. I do know that my dad had photon radiation (3d CRT) and brachy...as he had aggressive tumors. The treatment side effects did hit him pretty hard, but they were aggressive with the treatment too as it was speculated the cancer was at the margins and perhaps beyond.

Post Edited (Squirm) : 6/28/2011 10:41:10 PM (GMT-6)

Posted 7/1/2011 10:29 PM (GMT 0)
Thanks for all the replies, and for those who emailed, too! I have been accepted into the Loma Linda proton treatment, insurance has cleared, so now it's getting close.
Posted 7/1/2011 10:33 PM (GMT 0)
Great! Good luck and let us know how it goes!
Posted 7/1/2011 11:45 PM (GMT 0)
@skeeter - you're waiting for insurance - how's that going? I know I was a wreck just waiting for the "treatment denied" phone call. Anytime you want to email, my address is there on my "info" page.

I'll be thinking good thoughts for you to get the approval soon!
Posted 7/2/2011 12:12 AM (GMT 0)

Leroy said...
@skeeter - you're waiting for insurance - how's that going? I know I was a wreck just waiting for the "treatment denied" phone call. Anytime you want to email, my address is there on my "info" page.

I'll be thinking good thoughts for you to get the approval soon!

Still waiting . . . but hopeful I will hear something soon. It has been a very stressful time, for sure.

Thanks.
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