GOING FOR PROTON

Feb2010
Feb2010 Member Posts: 51
edited March 2014 in Prostate Cancer #1
Since getting the Dx from my physician, it has been a roller coaster of emotions; worries, grief, and relief, all bundled up together on a seemingly endless free ride.

I could wait and don’t have to do anything at this stage, but my own unique situation forces me to make a decision and be clear of PC now. I am hopeful that Proton Treatment will do exactly that.

I have to stop worrying about all the uncertainties. If PC rears its ugly head again in the future, I will deal with it in the future.

Right now I have to move on. Right now, I have to take care of it with the least amount of stress on me and my family. I believe Proton Therapy combines an efficacy factor comparable with the other options and the aforementioned objective in mind.

I will be posting each step I take along the way, during the course of my treatment, and the results. I know you will be there, supporting me through it all.

To all of you, brothers-strangers, bonded together by an unfortunate event…from the bottom of my heart, I thank you so very much.

I’ll “see” you around.
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Comments

  • lewvino
    lewvino Member Posts: 1,010
    Which Proton center will you
    Which Proton center will you be going to?

    Larry
  • Trew
    Trew Member Posts: 931 Member
    So where are you going for
    So where are you going for proton treatment? I think this is a good choice myself. There are a lot of happy "graduates" from proton treatment and the numbers are growning every year.
  • Feb2010
    Feb2010 Member Posts: 51
    lewvino said:

    Which Proton center will you
    Which Proton center will you be going to?

    Larry

    PROTON CENTER
    I have called Loma Linda, they have a two-month waiting period for consultation and another month for treatment. University of Florida doesn't have a waiting period. I have not decided yet. Loma Linda is the pioneer in this field, although UF has been around for four years now, and they have a nice record as well. The waiting period seems to be the "deal-breaker".
  • Trew
    Trew Member Posts: 931 Member
    Feb2010 said:

    PROTON CENTER
    I have called Loma Linda, they have a two-month waiting period for consultation and another month for treatment. University of Florida doesn't have a waiting period. I have not decided yet. Loma Linda is the pioneer in this field, although UF has been around for four years now, and they have a nice record as well. The waiting period seems to be the "deal-breaker".

    Treatment at LLU
    It is amazing how easy it is to get into Loma Linda between Thanksgiving and Christmas- many men do not want to start a 8-9 week program that goes through Christmas. So for a brief time each year there is almost no waiting to get into LLU.

    At LLU I was seen by Dr. Rossi- he is very good at nuclear oncology. But consider- LLU is now the oldest proton center in the US. Newer proton machines may have fewer down times than the ones at LLU, but the attending staff at LLU will make you feel very comfortable about treatment. If you need a place at LLU to stay I would recommend the place I stayed at-a little less expensive than most and very comfortable. If you look at the list of housing LLU provides my wife and I stayed at Creekside Apartments. We stayed in the Sunflower room and it was about a 10- 12 minute walk from the treatment center.
  • Feb2010
    Feb2010 Member Posts: 51
    Trew said:

    Treatment at LLU
    It is amazing how easy it is to get into Loma Linda between Thanksgiving and Christmas- many men do not want to start a 8-9 week program that goes through Christmas. So for a brief time each year there is almost no waiting to get into LLU.

    At LLU I was seen by Dr. Rossi- he is very good at nuclear oncology. But consider- LLU is now the oldest proton center in the US. Newer proton machines may have fewer down times than the ones at LLU, but the attending staff at LLU will make you feel very comfortable about treatment. If you need a place at LLU to stay I would recommend the place I stayed at-a little less expensive than most and very comfortable. If you look at the list of housing LLU provides my wife and I stayed at Creekside Apartments. We stayed in the Sunflower room and it was about a 10- 12 minute walk from the treatment center.

    Thanks Trew. Loma Linda
    Thanks Trew. Loma Linda would be really great, the timing, my job relocation, etc., plays a big part. I do have time to wait but I think I could have the same results at UF.
  • lewvino
    lewvino Member Posts: 1,010
    Feb2010 said:

    PROTON CENTER
    I have called Loma Linda, they have a two-month waiting period for consultation and another month for treatment. University of Florida doesn't have a waiting period. I have not decided yet. Loma Linda is the pioneer in this field, although UF has been around for four years now, and they have a nice record as well. The waiting period seems to be the "deal-breaker".

    My dad was treated at Loma
    My dad was treated at Loma Linda and doing great. Check on the cost though between the two.
    When I did my research last summer the cost at Florida was considerably higher then at Loma Linda but then I found out insurance would not pay for either so went with Davinci.

    Larry
  • Feb2010
    Feb2010 Member Posts: 51
    lewvino said:

    My dad was treated at Loma
    My dad was treated at Loma Linda and doing great. Check on the cost though between the two.
    When I did my research last summer the cost at Florida was considerably higher then at Loma Linda but then I found out insurance would not pay for either so went with Davinci.

    Larry

    Thanks Larry.
    I checked with

    Thanks Larry.
    I checked with TRICARE, and fortunately enough, they do cover the cost of Proton Therapy.
  • Trew
    Trew Member Posts: 931 Member
    So.......
    Hey Feb, just wondering if you have decided on just where you are going to get that proton therapy? You are not forgotten.
  • Trew
    Trew Member Posts: 931 Member
    Feb2010 said:

    Thanks Trew. Loma Linda
    Thanks Trew. Loma Linda would be really great, the timing, my job relocation, etc., plays a big part. I do have time to wait but I think I could have the same results at UF.

    whiled at LLU I met patients
    whiled at LLU I met patients coming in through southern CA traffice up to 2 hrs one way for treatment, then drive home for work in the afternoon.

    If you could find use a proton center close to home that would be an option.

    Others hve done it.
  • mrshisname
    mrshisname Member Posts: 186
    decisions
    Hi Feb, I just wanted to wish you well and please post on your experience, it is so helpful to read about others' courses of treatment.
  • Feb2010
    Feb2010 Member Posts: 51

    decisions
    Hi Feb, I just wanted to wish you well and please post on your experience, it is so helpful to read about others' courses of treatment.

    Larry, Trew, and Mrs.
    It has been about a week since I visited this site last. I have been really busy.
    Thanks for all the kind words.
    I have chosen Loma Linda,primarily based on their pioneering experience.
    I was told my consult won't be until June and start treatment a month later.
    I spoke with my primary physician at Portsmouth Naval Medical and confirmed that with my stage I should be fine considering the time delay in treatment.
    I have faxed all my doctor's notes and pathology reports and am waiting for LL to call back.
    Mrs, I will post updates regarding my experience. I will share everything that I could. Thanks again.
  • Kongo
    Kongo Member Posts: 1,166 Member
    Feb2010 said:

    Larry, Trew, and Mrs.
    It has been about a week since I visited this site last. I have been really busy.
    Thanks for all the kind words.
    I have chosen Loma Linda,primarily based on their pioneering experience.
    I was told my consult won't be until June and start treatment a month later.
    I spoke with my primary physician at Portsmouth Naval Medical and confirmed that with my stage I should be fine considering the time delay in treatment.
    I have faxed all my doctor's notes and pathology reports and am waiting for LL to call back.
    Mrs, I will post updates regarding my experience. I will share everything that I could. Thanks again.

    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.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    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.

    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. :)
  • Trew
    Trew Member Posts: 931 Member

    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. :)

    On Going to LLU
    SSW, I have a Blue Cross PPO policy and I was covered. I wish you the best. I met a couple of vets getting treatment at LLU. There is a good VA hospital not far from LLU- only a mile or so away.
  • Kongo
    Kongo Member Posts: 1,166 Member

    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. :)

    Swing
    In addition to Cyberknife, which I am also doing a consult with, you might want to check out Novalis Tx as a treatment option. They market themselves as the next generation Cyberknife and the inventor of Cyberknife recently left the Cyberknife comany and joined the Novalis company. While similar in many ways I believe the biggest differences are more accuracy in shapng the X-ray beam, doing the procedure without using the fudicial implants necessary for Cyberknife, and takes less time. Novalis is at UCLA Medical Center, Harvard, and several other prestigious medical hospitals. I have a consult with them too and there is a clinical study going on with Novalis that should you qualify, might provide closer monitoring of your condition. Plenty of websites describe the procedure in detail.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Kongo said:

    Swing
    In addition to Cyberknife, which I am also doing a consult with, you might want to check out Novalis Tx as a treatment option. They market themselves as the next generation Cyberknife and the inventor of Cyberknife recently left the Cyberknife comany and joined the Novalis company. While similar in many ways I believe the biggest differences are more accuracy in shapng the X-ray beam, doing the procedure without using the fudicial implants necessary for Cyberknife, and takes less time. Novalis is at UCLA Medical Center, Harvard, and several other prestigious medical hospitals. I have a consult with them too and there is a clinical study going on with Novalis that should you qualify, might provide closer monitoring of your condition. Plenty of websites describe the procedure in detail.

    Kongo
    Are you going to UCLA for a consult about Novalis......Is it for a study?....... If so what is the criteria......Can you direct me to any medical literature..................to me the Novalis sounds good, but I have a concern of it being very new, and not tested.

    Ira

    PS. Were you able to go to Alvarado Hospital for a support group with Dr. Barken.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Kongo said:

    Swing
    In addition to Cyberknife, which I am also doing a consult with, you might want to check out Novalis Tx as a treatment option. They market themselves as the next generation Cyberknife and the inventor of Cyberknife recently left the Cyberknife comany and joined the Novalis company. While similar in many ways I believe the biggest differences are more accuracy in shapng the X-ray beam, doing the procedure without using the fudicial implants necessary for Cyberknife, and takes less time. Novalis is at UCLA Medical Center, Harvard, and several other prestigious medical hospitals. I have a consult with them too and there is a clinical study going on with Novalis that should you qualify, might provide closer monitoring of your condition. Plenty of websites describe the procedure in detail.

    Novalis Clinical Trials?
    Thanks for the tip, Kongo.

    The only clinical trial of Novalis that I found on ClinicalTrials.gov is a 2 yr study ending in August 2011 being conducted by San Diego Radiosurgery at the Palomar Medical Center. Contact: Laura M. Bauchert. Phone: 760-739-3835.

    I found info about the use of Novalis at UCLA on it's Radiation Oncology site but no mention of a clinical trial w/Novalis there. The only current clinical trial listed on UCLA's site is one to measure the amount of natural repair of DNA following radiation treatment. See: http://radonc.ucla.edu/body.cfm?id=63&oTopID=62.

    However, I also found 2 long-term (7 year) clinical trials of CyberKnife. One using a uniform dose distribution and another using a simulated brachytherapy dose distribution. Both are sponsored by Accuray (the mfg of CyberKnife) and are being held at sites all across the country.

    Since one of the problems of brachytherapy is the limitations of seeding in reaching all areas of the prostate, the idea of the simulated brachytherapy doesn't appeal to me. IMHO, the better study with less restrictive criteria is the uniform dose distribution trial. There's only one trial site in CA at the Scripps Cancer Center in La Jolla (which I believe is a 1st rate medical institution). Contact: Debbie Deseno, RN. Phone: 858-652-5465.

    I'm going to contact all of these organizations to see what's going on.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Kongo
    Are you going to UCLA for a consult about Novalis......Is it for a study?....... If so what is the criteria......Can you direct me to any medical literature..................to me the Novalis sounds good, but I have a concern of it being very new, and not tested.

    Ira

    PS. Were you able to go to Alvarado Hospital for a support group with Dr. Barken.

    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
  • Kongo
    Kongo Member Posts: 1,166 Member

    Novalis Clinical Trials?
    Thanks for the tip, Kongo.

    The only clinical trial of Novalis that I found on ClinicalTrials.gov is a 2 yr study ending in August 2011 being conducted by San Diego Radiosurgery at the Palomar Medical Center. Contact: Laura M. Bauchert. Phone: 760-739-3835.

    I found info about the use of Novalis at UCLA on it's Radiation Oncology site but no mention of a clinical trial w/Novalis there. The only current clinical trial listed on UCLA's site is one to measure the amount of natural repair of DNA following radiation treatment. See: http://radonc.ucla.edu/body.cfm?id=63&oTopID=62.

    However, I also found 2 long-term (7 year) clinical trials of CyberKnife. One using a uniform dose distribution and another using a simulated brachytherapy dose distribution. Both are sponsored by Accuray (the mfg of CyberKnife) and are being held at sites all across the country.

    Since one of the problems of brachytherapy is the limitations of seeding in reaching all areas of the prostate, the idea of the simulated brachytherapy doesn't appeal to me. IMHO, the better study with less restrictive criteria is the uniform dose distribution trial. There's only one trial site in CA at the Scripps Cancer Center in La Jolla (which I believe is a 1st rate medical institution). Contact: Debbie Deseno, RN. Phone: 858-652-5465.

    I'm going to contact all of these organizations to see what's going on.

    Swing
    Check this website re the clinical trial. Still ongoing. http://www.clinicaltrial.gov/ct2/show/NCT00969202

    If you do a google search on "Novalis Tx" you will get a bunch of hits about the system, its manufacturer, and where it is and where it is planned.

    Although I have not yet been to the consults with either Cyberknife or Novalis, my reading leads me to believe that Novalis takes advantage of more sophisticated organ tracking and beam forming technology and does not require the fudicial implants associated with Cyberknife. I meet with them the last week of April and will let you know what I find out.

    Cyberknife has a good patient discussion board moderated by doctors who use the system. I found lots of good information there and the doctors were quick and responsive in answering queries.

    http://cyberknife.com/Forum.aspx?g=topics&f=2586
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    Kongo said:

    Swing
    Check this website re the clinical trial. Still ongoing. http://www.clinicaltrial.gov/ct2/show/NCT00969202

    If you do a google search on "Novalis Tx" you will get a bunch of hits about the system, its manufacturer, and where it is and where it is planned.

    Although I have not yet been to the consults with either Cyberknife or Novalis, my reading leads me to believe that Novalis takes advantage of more sophisticated organ tracking and beam forming technology and does not require the fudicial implants associated with Cyberknife. I meet with them the last week of April and will let you know what I find out.

    Cyberknife has a good patient discussion board moderated by doctors who use the system. I found lots of good information there and the doctors were quick and responsive in answering queries.

    http://cyberknife.com/Forum.aspx?g=topics&f=2586

    San Diego Radiosurgery Novalis Trial
    The link you cite is for the San Diego Radiosurgery Novalis Trial at the Palomar Medical Center that I mentioned above.

    Thanks for the CyberKnife forum link! I saw it the last time I visited Accuray's site, but forgot about it.