Proton Sites, Proton Therapy

2

Comments

  • Trew
    Trew Member Posts: 932 Member
    #22
    lewvino said:

    What a rough road you have
    What a rough road you have been down. There were two basic reasons I did not go with Proton.
    1. Insurance denied even on appeal
    2. Borderline decision on my treatment with Gleason 4+3 7. I Did have a positive margin in right appex but doing OK so far at 7 months post surgery.

    My wifes brother actually works at Loma Linda in their computer area as a DataBase administrator for the tranpslants that are performed so I am very familiar with the hospital plus my dad being a patient out there in 97. (My wifes brother Started with the Heart Transplant team but he now keeps stats on all the transplants)

    I had made arrangements to stay with my Wifes Brother if I had the Proton treatments. I was a little turned off by the financial aspect at Loma Linda when I found out that my insurance wouldn't pay. Loma Linda was 'we will finance treatment' but at 24 month payment plan auto deducted from your account - No if's and's or negotiations about the 24 month repay plan.

    As you say sometimes things just don't turn out like we hoped or planned!

    I remember now reading your post about the 'shot' with no warning.

    Larry

    I have a son who lives in
    I have a son who lives in Yucaipa and my wife and I stayed with him for 4 weeks, then we rented a duplex near the hospital and away from the kids and dog so I could sleep more, or try to.

    My son and his wife graduated from LLU School of Dentistry.
  • Trew
    Trew Member Posts: 932 Member
    #23
    Laterst News Letter from the
    Laterst News Letter from the Proton Fellowship of LLU alumni:

    "Dear Members,
    The opening quotation reminds me of something I've heard from Golf Professional, TV Personality, and BOB Member, Ken Venturi on several occasions: "The world will not remember you for what you take from it, but for what you leave behind."

    No one that I know of has done more to give back than this great man. Ken has raised almost $3 million for the Ken Venturi Endowed Chair at Loma Linda through his annual Proton Charity Golf Tournaments. This year's tournament is planned for May 17, and I'm planning to be there. Space is limited; the event is always sold out, so make your reservations soon. Details and information for registering are provided below."


    The letter then goes on to links for this month's latest from LLU proton graduates. BOB stands for Brotherhood of the Balloon- a technique used at LLU to help protect the rectum from damage during treatment. This is a fine program and alternative to surgery.
  • Trew
    Trew Member Posts: 932 Member
    #24
    News from
    News from LLU:

    The February 1, 2010 paper, published in the Journal of Clinical Oncology is titled, “Randomized Trial Comparing Conventional-Dose With High-Dose Conformal Radiation Therapy in Early-Stage Adenocarcinoma of the Prostate: Long Term Results From Proton Radiation Oncology Group/American College of Radiology 95-09.”



    http://jco.ascopubs.org/cgi/content/short/28/7/1106
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #25
    Trew said:

    News from
    News from LLU:

    The February 1, 2010 paper, published in the Journal of Clinical Oncology is titled, “Randomized Trial Comparing Conventional-Dose With High-Dose Conformal Radiation Therapy in Early-Stage Adenocarcinoma of the Prostate: Long Term Results From Proton Radiation Oncology Group/American College of Radiology 95-09.”



    http://jco.ascopubs.org/cgi/content/short/28/7/1106

    Trew
    I attended a support group tonight. Asked the doc running the group to discuss IMRT verus proton......anyway, he said that loma linda , a few weeks ago came out with information showing proton was doing very well......do you know anything about this?
    Ira
  • Packman2
    Packman2 Member Posts: 1
    #26
    ProCure
    The proton therapy site in Bloomington Indiana is associate with a company called ProCure. They just opened another center in Oklahoma City in Jul 09. I completed treatment there for prostate cancer last month. It was a great experience. Have a follow-up in May, and am expecting my PSA to be <1.
  • Evagirl
    Evagirl Member Posts: 60
    #27
    Packman2 said:

    ProCure
    The proton therapy site in Bloomington Indiana is associate with a company called ProCure. They just opened another center in Oklahoma City in Jul 09. I completed treatment there for prostate cancer last month. It was a great experience. Have a follow-up in May, and am expecting my PSA to be <1.</p>

    About Proton

    I was wondering if your gleason scores are mostly 3+3 and 3=4 total 7
    and a 18 on the PSA CA contained in one side of prostate.

    Has anyone heard if Proton would be effective here?
    and if radiation would be combined?

    I would be willing to spend $25 thou to avoid complications

    to me money is to be used for something you really need~~
  • Trew
    Trew Member Posts: 932 Member
    #28
    Evagirl said:

    About Proton

    I was wondering if your gleason scores are mostly 3+3 and 3=4 total 7
    and a 18 on the PSA CA contained in one side of prostate.

    Has anyone heard if Proton would be effective here?
    and if radiation would be combined?

    I would be willing to spend $25 thou to avoid complications

    to me money is to be used for something you really need~~

    Why Not Proton?
    You should contact a proton site near you or in a place you would like to visit and get info directly from them. I contacted two sites and had info back within 24 hrs from both places. They will want copies of biopsy and path reports and lab reports. Not hard to provide. And then go from there. Your DH looks exactly like the majority of men I saw at LLU. His scorces look like the scores of many men there. DH is lucky that the higher number on his gleason is the back number- that is in his favor.

    You have nothing to lose- pick a site and call or email. Why not?
  • lewvino
    lewvino Member Posts: 1,010
    #29
    Evagirl said:

    About Proton

    I was wondering if your gleason scores are mostly 3+3 and 3=4 total 7
    and a 18 on the PSA CA contained in one side of prostate.

    Has anyone heard if Proton would be effective here?
    and if radiation would be combined?

    I would be willing to spend $25 thou to avoid complications

    to me money is to be used for something you really need~~

    EvaGirl, Of course we are
    EvaGirl, Of course we are not doctors just former patients but I would think Proton would be worth exploring. The 3+3 as Trew mentioned is in your favor. Some insurance companies won't pay for the treatment but others do.

    Larry
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #30
    Evagirl said:

    About Proton

    I was wondering if your gleason scores are mostly 3+3 and 3=4 total 7
    and a 18 on the PSA CA contained in one side of prostate.

    Has anyone heard if Proton would be effective here?
    and if radiation would be combined?

    I would be willing to spend $25 thou to avoid complications

    to me money is to be used for something you really need~~

    Hi
    In the US TOO Prostate cancer education and support Hot sheet 1800-80-us-too or www.ustoo.org , March 2010 there is an article - a rwiew by a task force at the mass general hospital on the results of various treatments for men withlow risk prostate cancer.
    (Psa less than 10ng/ml witha glason score less than 7.)

    Part of the results---"Proton Beam therapy is most costly without any evidence it is better"

    Frankly I notice that some on this site go on and on about Proton Beam therapy without providing any scientific evidence that it is better.....I know that I will get some responses from this, in the responses please provide concrete reproducable information that it is better, not the sales literature that the Proton Centers provide, or that doctors have been patients of proton, or any thing else of that type.......Simple scientifically show that Proton is better.

    Ira
  • Trew
    Trew Member Posts: 932 Member
    #31
    hopeful and optimistic said:

    Hi
    In the US TOO Prostate cancer education and support Hot sheet 1800-80-us-too or www.ustoo.org , March 2010 there is an article - a rwiew by a task force at the mass general hospital on the results of various treatments for men withlow risk prostate cancer.
    (Psa less than 10ng/ml witha glason score less than 7.)

    Part of the results---"Proton Beam therapy is most costly without any evidence it is better"

    Frankly I notice that some on this site go on and on about Proton Beam therapy without providing any scientific evidence that it is better.....I know that I will get some responses from this, in the responses please provide concrete reproducable information that it is better, not the sales literature that the Proton Centers provide, or that doctors have been patients of proton, or any thing else of that type.......Simple scientifically show that Proton is better.

    Ira

    Lets Say Proton Beam is Equal To....
    Perhaps proton Beam Therapy is only equal to surgery in some ways, But consider the outcome: far less incontinence and ED problems. For a younger man he can still father a child after proton beam therapy- try doing that after surgery. And the risks of mistakes during proton beam therapy are far far less than in surgery where nerves or bladder neck or... can be damaged. To escape those conequences some search the country for the best surgeon because they know full well what the outcome of surgery could be. And surgery is expensive, too. A little more and one can bypass all the risks associated with surgery.

    So surgery and Proton beam therapy are equal? How so?
  • Trew
    Trew Member Posts: 932 Member
    #32
    Evagirl said:

    About Proton

    I was wondering if your gleason scores are mostly 3+3 and 3=4 total 7
    and a 18 on the PSA CA contained in one side of prostate.

    Has anyone heard if Proton would be effective here?
    and if radiation would be combined?

    I would be willing to spend $25 thou to avoid complications

    to me money is to be used for something you really need~~

    Make the Call
    Evagirl, You and DH should look at the proton sites, select one and then call their information number and request a consult- very easy. They seemly consider your path, lab and biopsy reports and they will let you know what they can do for you. Proton stats are building in number every year. I go on the testimonial page for Loma Linda and I am amazed at the number of very educated people that use proton therapy. When I was starting proton therapy I shared the walk with a dentist from WA who was just finishing his full course of 45 proton treatments. He was out goling 3 times a week and enjoying the dining in and around the Loma Linda area. And all systems were still intact.

    Here is link to the testimonial page for LLU:

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

    Look on the menu box on the left side and you will find it.

    BOB refers to the Brotherhood of the Balloon. LLU inserts a balloon up the rectum and then fills it with water before treatment to help protect the rectum from damage. All men share this expereince and from that comes the name of the fellowship we share.

    Make the call- investigate.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #33
    Trew said:

    Lets Say Proton Beam is Equal To....
    Perhaps proton Beam Therapy is only equal to surgery in some ways, But consider the outcome: far less incontinence and ED problems. For a younger man he can still father a child after proton beam therapy- try doing that after surgery. And the risks of mistakes during proton beam therapy are far far less than in surgery where nerves or bladder neck or... can be damaged. To escape those conequences some search the country for the best surgeon because they know full well what the outcome of surgery could be. And surgery is expensive, too. A little more and one can bypass all the risks associated with surgery.

    So surgery and Proton beam therapy are equal? How so?

    another part of the article
    By the way its comparing active surveillance, radical prostecectomy, brackys therapy, IMRT and Proton Beam'''''''''''the article is lengthy , so you really need to read it, but below is another quote.....

    "there are different risks for certain side effects and complications, but no treatment stands out as superior overall."

    Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #34
    Trew said:

    Make the Call
    Evagirl, You and DH should look at the proton sites, select one and then call their information number and request a consult- very easy. They seemly consider your path, lab and biopsy reports and they will let you know what they can do for you. Proton stats are building in number every year. I go on the testimonial page for Loma Linda and I am amazed at the number of very educated people that use proton therapy. When I was starting proton therapy I shared the walk with a dentist from WA who was just finishing his full course of 45 proton treatments. He was out goling 3 times a week and enjoying the dining in and around the Loma Linda area. And all systems were still intact.

    Here is link to the testimonial page for LLU:

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

    Look on the menu box on the left side and you will find it.

    BOB refers to the Brotherhood of the Balloon. LLU inserts a balloon up the rectum and then fills it with water before treatment to help protect the rectum from damage. All men share this expereince and from that comes the name of the fellowship we share.

    Make the call- investigate.

    As previously posted
    "Frankly I notice that some on this site go on and on about Proton Beam therapy without providing any scientific evidence that it is better.....I know that I will get some responses from this, in the responses please provide concrete reproducable information that it is better, not the sales literature that the Proton Centers provide, or that doctors have been patients of proton, or any thing else of that type.......Simple scientifically show that Proton is better."
  • Trew
    Trew Member Posts: 932 Member
    #35
    hopeful and optimistic said:

    another part of the article
    By the way its comparing active surveillance, radical prostecectomy, brackys therapy, IMRT and Proton Beam'''''''''''the article is lengthy , so you really need to read it, but below is another quote.....

    "there are different risks for certain side effects and complications, but no treatment stands out as superior overall."

    Ira

    Missing Link?
    Hopeful, can you post a link to this article? Not that I doubt you, I'd justlike ot read it if I can.
  • Trew
    Trew Member Posts: 932 Member
    #36
    hopeful and optimistic said:

    As previously posted
    "Frankly I notice that some on this site go on and on about Proton Beam therapy without providing any scientific evidence that it is better.....I know that I will get some responses from this, in the responses please provide concrete reproducable information that it is better, not the sales literature that the Proton Centers provide, or that doctors have been patients of proton, or any thing else of that type.......Simple scientifically show that Proton is better."

    It was never my intent to
    It was never my intent to show proton beam as superior to anyting- just to present it as an alternative to surgery and list sites where proton therapy is available. It is worth noting that proton sites are increasing in number even though they are expensive to build. I understand the new site being built in Flint, MI is being driven by a man who had proton therapy for his prostate at Loma Linda U in CA and he was so enthused by the treatment and what it allowed him to escape from he was determined to get a similar site built in MI. And so it goes. There are far more happy proton patients, percentage wise, than there are happy surgery patients percentage wise. No, no hard facts- I just watch this board and note the number of men who have had complications like incontinency and ED problems after surgery. Those side effects are rare with proton beam therapy. Ten years down the road what is the rate of recurrance for surgery and proton therapy? Even if it is the same, for ten years a man as a better quality of life after proton therapy than after surgery, generally.

    These are my opinions. IF I could have caught my cancer earlier I would have taken all proton therapy and never looked back. Surgery was NEVER my first choice. I am living the reasons why right now. But I also had some complications with my cancer, so who am I to say anything?
  • lewvino
    lewvino Member Posts: 1,010
    #37
    Trew said:

    It was never my intent to
    It was never my intent to show proton beam as superior to anyting- just to present it as an alternative to surgery and list sites where proton therapy is available. It is worth noting that proton sites are increasing in number even though they are expensive to build. I understand the new site being built in Flint, MI is being driven by a man who had proton therapy for his prostate at Loma Linda U in CA and he was so enthused by the treatment and what it allowed him to escape from he was determined to get a similar site built in MI. And so it goes. There are far more happy proton patients, percentage wise, than there are happy surgery patients percentage wise. No, no hard facts- I just watch this board and note the number of men who have had complications like incontinency and ED problems after surgery. Those side effects are rare with proton beam therapy. Ten years down the road what is the rate of recurrance for surgery and proton therapy? Even if it is the same, for ten years a man as a better quality of life after proton therapy than after surgery, generally.

    These are my opinions. IF I could have caught my cancer earlier I would have taken all proton therapy and never looked back. Surgery was NEVER my first choice. I am living the reasons why right now. But I also had some complications with my cancer, so who am I to say anything?

    It will be interesting to
    It will be interesting to see where PROTON goes in the future. I'm not sure why some insurance companies deny paying for it and others will pay. When I talked to Loma Linda and Told them I had BCBS-Tennessee they straight out told me that it would not be covered and they had dealt with other patients with BCBS/TN before.

    Also I'm curious with the new health care plan being passed how that will impact Proton centers and all. I have great respect for Proton since it did the trick for my dad back in 1996 (still living cancer free) and also have great respect for DaVinci since I had the surgery in 2009.

    Larry
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #38
    Trew said:

    Missing Link?
    Hopeful, can you post a link to this article? Not that I doubt you, I'd justlike ot read it if I can.

    I hope that this helps
    "Hi
    In the US TOO Prostate cancer education and support Hot sheet 1800-80-us-too or www.ustoo.org , March 2010 there is an article - a rwiew by a task force at the mass general hospital on the results of various treatments for men withlow risk prostate cancer.
    (Psa less than 10ng/ml witha glason score less than 7.)"

    By the way, I do not take any ownership in one method or another, I simply think that it's a good idea for us all to work together, so we can improve as a group.

    I think that it's ok to doubt and ask why and how.........thats how we develop knowledge.

    Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #39
    Trew said:

    It was never my intent to
    It was never my intent to show proton beam as superior to anyting- just to present it as an alternative to surgery and list sites where proton therapy is available. It is worth noting that proton sites are increasing in number even though they are expensive to build. I understand the new site being built in Flint, MI is being driven by a man who had proton therapy for his prostate at Loma Linda U in CA and he was so enthused by the treatment and what it allowed him to escape from he was determined to get a similar site built in MI. And so it goes. There are far more happy proton patients, percentage wise, than there are happy surgery patients percentage wise. No, no hard facts- I just watch this board and note the number of men who have had complications like incontinency and ED problems after surgery. Those side effects are rare with proton beam therapy. Ten years down the road what is the rate of recurrance for surgery and proton therapy? Even if it is the same, for ten years a man as a better quality of life after proton therapy than after surgery, generally.

    These are my opinions. IF I could have caught my cancer earlier I would have taken all proton therapy and never looked back. Surgery was NEVER my first choice. I am living the reasons why right now. But I also had some complications with my cancer, so who am I to say anything?

    Well,
    I live relatively close to Loma Linda...in fact, I had contacted them.........around here there are several support groups, and I've been to a few......this is not scientific, but I met a man who has been on active surveillance for a few years and goes to all of them, and in my opinion is consummed with this, instead of living his life.....this guy is very well educated and is really smart, taking copious notes whereever he goes, and is really knowledgeable.......we had a conversation , and he said that he went to a proton support group at loma linda.....basically he mentioned that the people there really support prorton...in fact, he actually said he thought that they were on kool aid..........who knows, maybe its the atmosphere and the surrounding of the place where the therapy is given, or what ever.

    Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #40
    Trew said:

    It was never my intent to
    It was never my intent to show proton beam as superior to anyting- just to present it as an alternative to surgery and list sites where proton therapy is available. It is worth noting that proton sites are increasing in number even though they are expensive to build. I understand the new site being built in Flint, MI is being driven by a man who had proton therapy for his prostate at Loma Linda U in CA and he was so enthused by the treatment and what it allowed him to escape from he was determined to get a similar site built in MI. And so it goes. There are far more happy proton patients, percentage wise, than there are happy surgery patients percentage wise. No, no hard facts- I just watch this board and note the number of men who have had complications like incontinency and ED problems after surgery. Those side effects are rare with proton beam therapy. Ten years down the road what is the rate of recurrance for surgery and proton therapy? Even if it is the same, for ten years a man as a better quality of life after proton therapy than after surgery, generally.

    These are my opinions. IF I could have caught my cancer earlier I would have taken all proton therapy and never looked back. Surgery was NEVER my first choice. I am living the reasons why right now. But I also had some complications with my cancer, so who am I to say anything?

    Happy patients from treatment options are
    the ones who have success...
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #41
    hopeful and optimistic said:

    Happy patients from treatment options are
    the ones who have success...

    Yes Ira....that is very true
    and such a self fullfilling prophecy. However the more I stay on here and the more I read...I feel like I am starting to get a bit paranoid that my cure may not be a cure at all...and only just a non-reading of cancer for several years.....who knows? My better half says I better get off here and stop reading so much into everything I read on here and other research efforts. Sometimes it seems the more you learn and find out, the less you really know about this beast....its exhausting if you let it be...but I like to think the following:

    1. I did my research
    2. I found the treatment and person to do it
    3. It was a good experience
    4. Got the best results I could expect - no postive margins - non-detectable PSA
    5. I need to be Happy and believe I no longer have prostate cancer in my life...other than posting on here

    That's my plan and I'm sticken to it!

    Randy in Indy

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