Proton therapy

Ralphie62
Ralphie62 Member Posts: 61
edited March 2014 in Prostate Cancer #1
I'm looking to talk to someone who has had proton therapy, or knows about the situation at Loma Linda??? Thanks, Ralphie

Comments

  • Trew
    Trew Member Posts: 931 Member
    Loma Linda U
    I just completed 15 proton treatments and 24 radiation treatments at LLU Jan. 15. I had already had surgery with positive margins so my case was a bit different than most going to LLU for prostate cancer.

    If you google Loma Linda proton treatment you will find their home page. click on the contact link and drop them an email and you will most likely get a note and a phone call within 24 hours. They send out a free book and DVD worth reading/seeing.

    the guys with a gleason of 7 or less love the proton therapy. No surgery, no incontinency, sexual function maintained. In fact, in the December letter there was the story of a guy who had proton therapy 2 years agaon and just this passed Dec became the father of twins, and the article said, "try doing that after surgery!" Those with a gleason of 8 or higher are usually given a combination of proton and radiation. Still they get around surgery

    Don't hesitate on this one- proton therapy is well worth looking into!
  • lewvino
    lewvino Member Posts: 1,010
    My dad did Proton at Loma
    My dad did Proton at Loma Linda back in 1996 and doing fine today. Proton was going to be my first choice but my insurance would not pay for it so went Davinci instead.

    Drop me a note at [email protected] if you want to arrange a time to talk. I can tell you about my dad's experience. He is hard of hearing or I would but you in contact with him.
    But we have had some frank 'father son prostate cancer' talks.

    Loma Linda should also be able to put you in contact with others or even google proton Bob and he has lists of people willing to chat.

    Larry age 55 [email protected]
  • bdhilton
    bdhilton Member Posts: 803 Member
    to proton or not is the question
    I guess I am very fortunate in that I have insurance that will pay for anything except for HIFU and I looked in that as well up in Canada for ($25k)…

    As far as Proton I looked long and hard at this option (and I am a 55 year old with Clinical TB2, Gleason 4+3=7 (9/15 cores positive) palpable nodule right base and right mid with a PSA 2.82)… My decision has been to flying up to Chicago to have old fashion open surgery March 3 at Northwestern…

    Robert Marckini wrote a good book about Proton therapy and all of the testimonials on The Brotherhood of the Balloon sound great… in his book he states he was a clinical T1c with a Gleason 3+2=5…wow…I would have personally done HIFU with a 3+3=6 T1c…For me “Bob” had pretty “slow growth” type cancer and had many choices including watch and wait…

    At the end of the day you need to do what you believe in… not Bob, Walsh or anyone else but yourself…

    Best of luck
  • Trew
    Trew Member Posts: 931 Member
    bdhilton said:

    to proton or not is the question
    I guess I am very fortunate in that I have insurance that will pay for anything except for HIFU and I looked in that as well up in Canada for ($25k)…

    As far as Proton I looked long and hard at this option (and I am a 55 year old with Clinical TB2, Gleason 4+3=7 (9/15 cores positive) palpable nodule right base and right mid with a PSA 2.82)… My decision has been to flying up to Chicago to have old fashion open surgery March 3 at Northwestern…

    Robert Marckini wrote a good book about Proton therapy and all of the testimonials on The Brotherhood of the Balloon sound great… in his book he states he was a clinical T1c with a Gleason 3+2=5…wow…I would have personally done HIFU with a 3+3=6 T1c…For me “Bob” had pretty “slow growth” type cancer and had many choices including watch and wait…

    At the end of the day you need to do what you believe in… not Bob, Walsh or anyone else but yourself…

    Best of luck

    Proton Therapy
    Marckini's gleason might have been only a 5 but a lot of proton patients are in the 7 range, a few with 8's. The only 8's I met were getting a combination of proton/photon radiation. The end results over the years have been very encouraging, so much so that I think there are now 5 or 6 places to get proton treatment when once there was only Loma Linda.
  • bdhilton
    bdhilton Member Posts: 803 Member
    Trew said:

    Proton Therapy
    Marckini's gleason might have been only a 5 but a lot of proton patients are in the 7 range, a few with 8's. The only 8's I met were getting a combination of proton/photon radiation. The end results over the years have been very encouraging, so much so that I think there are now 5 or 6 places to get proton treatment when once there was only Loma Linda.

    I've made my mind up but...
    I have already made up my mind and I am doing the old fashion open surgery on March 3...
    I have read enough to know that nothing out there is "magically" so my advise to anyone seeking advice is to be realistic and truly understand the facts before selecting your type of treatment….and believe in it and go on
  • gumbyrun
    gumbyrun Member Posts: 58
    bdhilton said:

    I've made my mind up but...
    I have already made up my mind and I am doing the old fashion open surgery on March 3...
    I have read enough to know that nothing out there is "magically" so my advise to anyone seeking advice is to be realistic and truly understand the facts before selecting your type of treatment….and believe in it and go on

    Good post
    I looked at your profile and appreciate your comments here and those on your profile to wit "...and never second guess how you decide to treat this and believe that your choice is and was the best decision no matter what the outcome…."
    I am scheduled for daVinci on 2/26/10 and my wife and I are both on board with this procedure after doing the research and talking to the docs. But, its reassuring to read your comments in light of all the other posts on various treatment options/experiences. Just the other night I turned to my wife and said "You know, maybe we should look again at..." but she stopped me and reminded me that we have made the best choice for us. Period.
    One of the first things I realized when investigating my options and talking to other guys with PC was that everyone has to make their own informed decision and it could even get a little "testy" when defending (for lack of a better term) your choice.
  • bdhilton
    bdhilton Member Posts: 803 Member
    gumbyrun said:

    Good post
    I looked at your profile and appreciate your comments here and those on your profile to wit "...and never second guess how you decide to treat this and believe that your choice is and was the best decision no matter what the outcome…."
    I am scheduled for daVinci on 2/26/10 and my wife and I are both on board with this procedure after doing the research and talking to the docs. But, its reassuring to read your comments in light of all the other posts on various treatment options/experiences. Just the other night I turned to my wife and said "You know, maybe we should look again at..." but she stopped me and reminded me that we have made the best choice for us. Period.
    One of the first things I realized when investigating my options and talking to other guys with PC was that everyone has to make their own informed decision and it could even get a little "testy" when defending (for lack of a better term) your choice.

    thanks it is all real for all of us
    If you second guess yourself (in my opinion) after the fact/surgery you will drive your self crazy or into a depression. Easy for me to say now (prior to surgery) but this is the mind set I have going into this…Again, hope and believe in the best and know that my treatment is and was the best for me no matter what the outcome...

    The fact that you have surgery as an option is something to celebrate…not everyone has that as an option it can always be better or worse…Your goal should be to get back into your boat fishing ASAP and have a game plan prior to surgery to get there…. what are your stats anyway?

    Best to you
  • HIFUgal
    HIFUgal Member Posts: 58
    bdhilton said:

    thanks it is all real for all of us
    If you second guess yourself (in my opinion) after the fact/surgery you will drive your self crazy or into a depression. Easy for me to say now (prior to surgery) but this is the mind set I have going into this…Again, hope and believe in the best and know that my treatment is and was the best for me no matter what the outcome...

    The fact that you have surgery as an option is something to celebrate…not everyone has that as an option it can always be better or worse…Your goal should be to get back into your boat fishing ASAP and have a game plan prior to surgery to get there…. what are your stats anyway?

    Best to you

    guys....when on the wrong
    guys....when driving on the wrong road they won't stop and ask for directions, they keep going.

    Thank goodness I found HIFU, yup it was magic, no pain, no side effects, no hospital time, no depression, no hormones, and going in we were happy because we had found several who also reported the same easy go of it. And we went out to dinner that night and for a walk on the beach.

    Well, not eally "magic", it's ultrasound, it cooks the tissue inside the prstate leaving the gland so--no cutting--no chance of a nic on the gland which might cause the cancer to spill out. And no chance (very little chance) of the nerves being cut or nicked. It's real, it's new to us here in the USA, that's all, it's the latest.

    Ya can help some of the people some of the time........

    In answer to what about proton beam, I concur with lewvino, as my husband's urologist told us that it is radiation, percise, but still radiation, and radiation "keeps on giving" plus radiation causes side effects 2-3 years out, and increases your risk of other cancers later on.
  • 142
    142 Member Posts: 169
    HIFUgal said:

    guys....when on the wrong
    guys....when driving on the wrong road they won't stop and ask for directions, they keep going.

    Thank goodness I found HIFU, yup it was magic, no pain, no side effects, no hospital time, no depression, no hormones, and going in we were happy because we had found several who also reported the same easy go of it. And we went out to dinner that night and for a walk on the beach.

    Well, not eally "magic", it's ultrasound, it cooks the tissue inside the prstate leaving the gland so--no cutting--no chance of a nic on the gland which might cause the cancer to spill out. And no chance (very little chance) of the nerves being cut or nicked. It's real, it's new to us here in the USA, that's all, it's the latest.

    Ya can help some of the people some of the time........

    In answer to what about proton beam, I concur with lewvino, as my husband's urologist told us that it is radiation, percise, but still radiation, and radiation "keeps on giving" plus radiation causes side effects 2-3 years out, and increases your risk of other cancers later on.

    that road -
    Medical care is a toll road for now, and if insurance won't pay the HIFU toll, unless you have a stash of cash set aside, it is not an option, regardless.
  • HIFUgal
    HIFUgal Member Posts: 58
    142 said:

    that road -
    Medical care is a toll road for now, and if insurance won't pay the HIFU toll, unless you have a stash of cash set aside, it is not an option, regardless.

    agreed
    boy do I agree, and I believe that by making sure everyone knows about the option of HIFU it will put pressure on the FDA to approve it, afterall no treatment is FDA approved for prostate cancer, they were all approved as a "piggy back" on another approval. HIFU would have been too, except for the loss of money to the system.

    I put the treatment on visa, and BofA has loans, but I agree, one has to figure the worth.

    I'm getting tired of the harassment by bd saying it's magic, or I'm selling or advertising, He even harrasses me over my posting of where to get Cialis. I am just trying to help people.

    We buy insurance to cover our health, turns out what we are protecting is the American Medical Association.

    But, if everyone here asks their doctor about HIFU....it should shorten the time to approvals.

    Blue Cross almost always pays, and Aetna, United Healthcare and Rocky Mtn pay some of the time...I wish I knew why they paid some time and not others. The Veterans Assoc. pays too.