Proton Sites, Proton Therapy

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  • Trew
    Trew Member Posts: 932 Member
    #42
    hopeful and optimistic said:

    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

    Kool Aid?
    Hardly. But it does foster a strong bond of friendship and support among those in treatment and the medical care was always very considerate of kind, at least to me. I did not bond real well with the proton patients myself since I only had 15 proton treatments and then finished with radiation- but there was a good sense of support among the radiation patients, too. I would sit and listen to patients tell me of their experiences- all very positive.

    In my cancer journey so far- it has been my most positive and encouraging part of treatment.

    Certainly no kool aid- but lots of care, support and sympathy.

    And Hopeful, I'm sorry I missed your link above to the article. My mistake- not yours.
  • Trew
    Trew Member Posts: 932 Member
    #43
    hopeful and optimistic said:

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

    Well Said.
    :)
  • Trew
    Trew Member Posts: 932 Member
    #44
    randy_in_indy said:

    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

    Randy, you can't do better
    Randy, you can't do better than what you have done. I am still apprehensive. My gleason was a 9 with bladderneck involvement. I am still concerned even after surgery and radiation and shots. I think that concern comes through in a lot of my posts. I am sorry. Its just me in a hormonal imbalance.

    ;)
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #45
    Trew said:

    Well Said.
    :)

    Trew
    You have been all over your situation and I feel done what you need to...I hate the hormone effects on you and wish I could get rid of them for you. It makes me hurt to see and feel your pain brother...I pray you get through this on the right end of the stick! I really do feel so lucky so very lucky!


    randy in indy
  • lewvino
    lewvino Member Posts: 1,010
    #46
    randy_in_indy said:

    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

    My wife said sort of the
    My wife said sort of the same thing Randy.....You do have to take the forums and literature with care since sometimes these can tend to be more critical conditions and you do not hear about all the ones that are doing great.

    I personally enjoy the forum and as you do helping those that are just being diagnosed with this beast. It also helps keep me grounded and knowing that with my positive margin that I'm not out of the woods yet.

    It helped me tremdously the support given when I first found out about my prostate cancer.

    Larry
  • Trew
    Trew Member Posts: 932 Member
    #47
    New Site in OK
    Just found out there is a new proton treatment center in Oklahoma City, OK:

    http://procure.com/ok

    Looks like a good site. I was just doing a search for "proton treatment news" and found it.
  • Trew
    Trew Member Posts: 932 Member
    #48
    randy_in_indy said:

    Trew
    You have been all over your situation and I feel done what you need to...I hate the hormone effects on you and wish I could get rid of them for you. It makes me hurt to see and feel your pain brother...I pray you get through this on the right end of the stick! I really do feel so lucky so very lucky!


    randy in indy

    Randy, thank-you. I am
    Randy, thank-you. I am always delighted to hear success stories like yours, too. I do think in the end I will be ok- good to think that. Along the way I hated surgery, I hated the the shots- radiation part of treatment was a bit rough but the proton part was pretty good. And I like the way my PC has actually drawn my wife and I closer even though there are some serious physical problems right now.

    And randy, I am just up the road from you in southern MI.
  • Trew
    Trew Member Posts: 932 Member
    #49
    Other Proton Therapy News
    Here is a list of news articles:

    http://www.proton-therapy.org/news.htm

    Proton Therapy: the non-surgical option for treating PCa.
  • Trew
    Trew Member Posts: 932 Member
    #50
    New Proton Center in VA
    A new proton therapy center in Hampton, VA is opening soon. This iswa sjust posted in another thread but I would like to keep all this together on one easy to access post.

    The new center in Hampton, VA can be discovered at:

    http://www.hamptonproton.org/

    Clicking on the menu there is nice stuff going into this facility and some nice testimonials about proton therapy- the non-surgery option to PCa.
  • chitown
    chitown Member Posts: 90 Member
    #51
    lewvino said:

    You hit the nail on the head
    You hit the nail on the head with your Statement Mid and Low Gleason Scores.
    So many think it works for all. My dad had proton back around 1997. They were treating about any Gleason back then as they were learning at Loma Linda. THey now limit it to Gleason 7 or below and then will also mix with Standard radiation.

    Larry

    Larry - Is proton an option for me?
    Larry-You have greatly assisted me in the past so one more request.
    Am 48 and atheltic, 3+3 Gleason, 6 of 16 core positive. Am set for da vinci but have an open mind. What would you suggest? Should I explore?
  • Trew
    Trew Member Posts: 932 Member
    #52
    chitown said:

    Larry - Is proton an option for me?
    Larry-You have greatly assisted me in the past so one more request.
    Am 48 and atheltic, 3+3 Gleason, 6 of 16 core positive. Am set for da vinci but have an open mind. What would you suggest? Should I explore?

    I'm not Larry.But you can
    I'm not Larry.

    But you can see the growing number of proton centers being built and they are not cheap. These centers are NOT being built on a whim of fashion. There are very good outcomes behind proton numbers. And proton patients are left whole- complete! And generally happy, continent, and sexually whole. No important parts missing.

    I would recommend you get Robert Marckini's book from Loma Linda U- call their proton center info line and request the book and dvd they send out and read the book. Check out some testimonials. Surgery isn't the only option for treating PC.

    Right now, on the post directly below there is a link to MD Anderson- no fly by night place- but one of the top notch cancer treatment centers- and they are committed to proton therapy which in itself is quite an endorsement.

    I think all the proton centers now up and running in the US are listed on this thread about proton centers and treatment- so you have a lot of places to look into.

    While at LLU I met a man who walked out of his urologist's office 3 or 4 days before surgery and came to LLU. This surgeon was a bit angry and told him to never come back to see him, but he didn't care- once he considered the risks and after effects proton was the choice for him.
  • lewvino
    lewvino Member Posts: 1,010
    #53
    chitown said:

    Larry - Is proton an option for me?
    Larry-You have greatly assisted me in the past so one more request.
    Am 48 and atheltic, 3+3 Gleason, 6 of 16 core positive. Am set for da vinci but have an open mind. What would you suggest? Should I explore?

    chitown - I'm no doctor just
    chitown - I'm no doctor just another prostate cancer brother. 6 of 16 core's imply to me the cancer is in several places. Did they see it in just one particular side or quadrant?

    You ask if Proton is an option and yes it would be. If I were you what would I do? That I can not answer. I looked at Proton and Davinci, My dad had Proton and is doing great 12-13 years since his treatment. However I settle on Davinci even after having all my records sent out to Loma Linda and speaking with them 4 times on the phone.

    At 48 you should have success with either treatment. What is important to you? After Davinci you will not have any fluid during orgasm. Does that matter? My wife likes it with no mess! That is some what different but getting more used to it.

    I'm at 8 months post surgery (age 55) Have used only 1 pad since surgery. That is not per day that is 1 pad total. I Get a pretty good erection with Levitra 20mg (Not as good as presurgery) not complaining since the Doc said the cancer was in some of the erection nerve bundle and he took about 40% of the erection nerves on the one side. Last night was a blast by the way! Wife about kicked me out of the bedroom!

    Good luck and keep us updated!

    Larry
  • Trew
    Trew Member Posts: 932 Member
    #54
    lewvino said:

    chitown - I'm no doctor just
    chitown - I'm no doctor just another prostate cancer brother. 6 of 16 core's imply to me the cancer is in several places. Did they see it in just one particular side or quadrant?

    You ask if Proton is an option and yes it would be. If I were you what would I do? That I can not answer. I looked at Proton and Davinci, My dad had Proton and is doing great 12-13 years since his treatment. However I settle on Davinci even after having all my records sent out to Loma Linda and speaking with them 4 times on the phone.

    At 48 you should have success with either treatment. What is important to you? After Davinci you will not have any fluid during orgasm. Does that matter? My wife likes it with no mess! That is some what different but getting more used to it.

    I'm at 8 months post surgery (age 55) Have used only 1 pad since surgery. That is not per day that is 1 pad total. I Get a pretty good erection with Levitra 20mg (Not as good as presurgery) not complaining since the Doc said the cancer was in some of the erection nerve bundle and he took about 40% of the erection nerves on the one side. Last night was a blast by the way! Wife about kicked me out of the bedroom!

    Good luck and keep us updated!

    Larry

    I had De Vinci surgery done
    I had De Vinci surgery done by Dr. Joseph Mashni in Lansing Michigan at Sparrow hopital on Marrch 23, 2009. I have not had a day without pads since. I was down to about 1 pad a day before rad and a pad at night, but started having problems after rad. I am back down to about 1- 3 pads a day a a pad at night right now.

    Guys like Larry are so fortunate! But I know not every surgery turns out that way.

    That is why I wanted proton therapy, but even Loma Linda advised me to go ahead with the surgery when they looked at my stats. It seemed then I had no options left so I went as a lamb to the slaughter.
  • Trew
    Trew Member Posts: 932 Member
    #55
    May, 2010 News letter
    time to slide this back up to the top of the list. I just got my monthly newsletter from Robert Marckini also known as Proton Bob. Here is his opening comments for May 2010:

    Dear Members,
    The opening quote reminds me of the fact that so many of us who have gone the proton route were initially told by our doctors that surgery was either the "only" way to go or the "best" way to go. We didn't agree; we looked for something better; and we found it.

    There are now seven operating proton treatment centers in the U.S. with more to come. And you may be surprised to learn that there are 34 particle centers around the globe in places like Russia, Switzerland, Sweden, England, France, South Africa, Japan, Canada, Germany, Italy, China, and South Korea. Not all of them are proton centers; four use carbon ions. Not all are high energy centers with beams powerful enough to travel deep inside the body to treat prostate tumors, but most are.

    The demand for proton therapy for prostate cancer is increasing, thanks in part to our group and the terrific job you are doing to help spread the word. This is a double edged sword, however. There is a growing patient backlog at all U.S. proton centers, and there is increasing resistance by insurers to pay the higher cost of proton therapy as the number of patients requesting reimbursement increases. Overall, however, the cost is insignificant. Only about 1% of those diagnosed with prostate cancer in the U.S. are receiving proton therapy.

    The time is coming when proton therapy will be recognized universally as the superior treatment for prostate cancer. And, with developing treatment protocols and increased patient volumes, the costs will come down. In the meantime, we will be enlisting your support periodically through surveys and letter writing campaigns to help keep proton therapy on the front burner and in the public eye. Stay tuned.

    Our Featured Member this month is another example of the kind of people who choose proton therapy. He is a world traveler; a former Ambassador to the Kingdom of Morocco; a friend and confidant of several U.S. Presidents; the Under-Secretary-General of the United Nations; and a man who participates in and strongly supports important humanitarian and philanthropic causes. You will enjoy reading about Ambassador Joseph Verner Reed.

    My daughter, Deb Hickey, has jumped in with both feet and is leading a number of projects. In her column this month, she talks about feedback she is receiving as she tries to reconnect with members who were treated more than 10 or 15 years ago. It's interesting to note that although the proton radiation dose used back then was lower than today's levels, the overwhelming majority of these men are doing fine today.


    You can read the entire newsletter at:

    http://www.protonbob.com/newsltr.asp

    Proton Therapy- the non-surgergical option for PC

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