what about proton therapy?

mokincaid
mokincaid Member Posts: 9
edited March 2014 in Prostate Cancer #1
Just wondering what is the opinion of the members when it comes to proton therapy. That is my treatment of choice at this point.

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    Traditional Radiation Therapies
    Hi Mokinc
    In 2006 I did IMRT (3D Head) to the pelvic area for a total dosage of 68Gy in 37 fractions (every day except Sundays). I never felt fatigue (played golf on weekends) or nausea. I had a sensation of burning pain on my fifths’ week of treatment when urinating and the stool became much liquefied with traces of blood (proctitis), although no skin burning marks. These side effects were treated with separate medicines during the three month post treatment, but apart from the partial loss of rectum sensation at discharge (stool is now more consistent), all physical symptoms have gone and I never experienced incontinence.
    You could expect a similar experience with the Proton Beam Therapy (PBT), even thought, some guys say they have experienced less side effects but others saying the opposite.

    There is a interesting document by ICER comparing the three traditional types of radiation therapy; Brachy, IMRT and PBT.

    In that document they express as I quote;
    …The specific discussion of the assignment of ICER ratings for comparative clinical effectiveness and for comparative value used two separate frameworks: 1) PBT vs. IMRT; and 2) brachytherapy vs. IMRT. There was unanimous consensus that, compared to IMRT, PBT should be rated “Insufficient” in comparative clinical effectiveness, due to the dearth of data on its benefits and harms in this patient population.... However, many members of the ERG felt that, because PBT is an expensive technology, some judgment of comparative value should be made in the review. Again, the consensus was unanimous in rating PBT as “Low Value” relative to IMRT."

    In another paragraph they say; “The group was unanimous in considering brachytherapy a “High Value” technology, whether compared to PBT or to IMRT."

    I hope this helps your quest. You may want to read the whole document at the following site;
    Final Appraisal Document For Brachytherapy & Proton Beam Therapy For Treatment Of Clinically-Localized, Low-Risk Prostate Cancer”, ICER.

    http://www.icer-review.org/index.php/Search.html?PROT=&ordering=&searchphrase=all&searchword=BRACHYTHERAPY+

    Wishing you the best
    VGama
  • Robert1941
    Robert1941 Member Posts: 27
    Me too
    I am also looking at protons and would like to here from anyone who has had it done.
  • SRVR
    SRVR Member Posts: 11

    Me too
    I am also looking at protons and would like to here from anyone who has had it done.

    Proton Therapy
    I finished proton treatment at Loma Linda University Medical Center a couple of weeks ago.

    It was a fantastic experience. I have had no side effects that hadn't already existed (urinary frequency from an enlarged prostate gland). I've felt absolutely no pain, have had no incontinence in any form, and have no change in erectile function.

    The most striking thing about the approach at Loma Linda is the social, spiritual and emotional support the organization provides. I actually miss the place. I don't know where else you can be treated in the company of 75 other men who all want to talk about and share their everyday experiences about their cancer. There are no secrets there in respect to treatment issues and the problems are few and far between. The place is as advertised.

    Check out protons.com. Get Bob Markini's book. Read it with the knowledge that Bob's treatment was about ten years ago. Dosages are different today and side effects are fewer. Although I would have been happy to have had all of the same minor side effects Bob had, I missed them all.

    51 yrs. 5.1 psa 3+4
  • Robert1941
    Robert1941 Member Posts: 27
    SRVR said:

    Proton Therapy
    I finished proton treatment at Loma Linda University Medical Center a couple of weeks ago.

    It was a fantastic experience. I have had no side effects that hadn't already existed (urinary frequency from an enlarged prostate gland). I've felt absolutely no pain, have had no incontinence in any form, and have no change in erectile function.

    The most striking thing about the approach at Loma Linda is the social, spiritual and emotional support the organization provides. I actually miss the place. I don't know where else you can be treated in the company of 75 other men who all want to talk about and share their everyday experiences about their cancer. There are no secrets there in respect to treatment issues and the problems are few and far between. The place is as advertised.

    Check out protons.com. Get Bob Markini's book. Read it with the knowledge that Bob's treatment was about ten years ago. Dosages are different today and side effects are fewer. Although I would have been happy to have had all of the same minor side effects Bob had, I missed them all.

    51 yrs. 5.1 psa 3+4

    Thanks
    Thanks, SVR for posting. I am really looking at this and I thank you for this good info.
  • mokincaid
    mokincaid Member Posts: 9

    Thanks
    Thanks, SVR for posting. I am really looking at this and I thank you for this good info.

    Me too
    Yes, thank you for the info. If I do get proton therapy it will be at Loma Linda since that is the only facility of this type that my insurance approves.
  • SRVR
    SRVR Member Posts: 11
    mokincaid said:

    Me too
    Yes, thank you for the info. If I do get proton therapy it will be at Loma Linda since that is the only facility of this type that my insurance approves.

    Ask Around
    Testimonials tell the story. Join the Brotherhood of the Balloon at protonbob.com and you'll have the names, addresses, phone numbers, and email addresses of over 5,000 of us who are happy to share our experiences with proton therapy. I don't know of any support group for another type of treatment that is this open and willing to talk about it.

    If you go through with treatment at LL you're going to be glad you did.
  • SRVR
    SRVR Member Posts: 11

    Traditional Radiation Therapies
    Hi Mokinc
    In 2006 I did IMRT (3D Head) to the pelvic area for a total dosage of 68Gy in 37 fractions (every day except Sundays). I never felt fatigue (played golf on weekends) or nausea. I had a sensation of burning pain on my fifths’ week of treatment when urinating and the stool became much liquefied with traces of blood (proctitis), although no skin burning marks. These side effects were treated with separate medicines during the three month post treatment, but apart from the partial loss of rectum sensation at discharge (stool is now more consistent), all physical symptoms have gone and I never experienced incontinence.
    You could expect a similar experience with the Proton Beam Therapy (PBT), even thought, some guys say they have experienced less side effects but others saying the opposite.

    There is a interesting document by ICER comparing the three traditional types of radiation therapy; Brachy, IMRT and PBT.

    In that document they express as I quote;
    …The specific discussion of the assignment of ICER ratings for comparative clinical effectiveness and for comparative value used two separate frameworks: 1) PBT vs. IMRT; and 2) brachytherapy vs. IMRT. There was unanimous consensus that, compared to IMRT, PBT should be rated “Insufficient” in comparative clinical effectiveness, due to the dearth of data on its benefits and harms in this patient population.... However, many members of the ERG felt that, because PBT is an expensive technology, some judgment of comparative value should be made in the review. Again, the consensus was unanimous in rating PBT as “Low Value” relative to IMRT."

    In another paragraph they say; “The group was unanimous in considering brachytherapy a “High Value” technology, whether compared to PBT or to IMRT."

    I hope this helps your quest. You may want to read the whole document at the following site;
    Final Appraisal Document For Brachytherapy & Proton Beam Therapy For Treatment Of Clinically-Localized, Low-Risk Prostate Cancer”, ICER.

    http://www.icer-review.org/index.php/Search.html?PROT=&ordering=&searchphrase=all&searchword=BRACHYTHERAPY+

    Wishing you the best
    VGama

    About the source of that quote
    From the ICER website regarding their purpose and mission statement:

    "ICER engages more deeply throughout the assessment process with all stakeholders, including patients, clinicians, manufacturers, purchasers, and payers. ICER also includes as part of all its assessments the results of cost-effectiveness analysis, and continues to work with stakeholders to refine a rating system for comparative clinical effectiveness and comparative value to guide health care decisions."

    What is best for the patient isn't always what is cost-effective for "manufacturers, purchasers and payers".

    There is no question that proton therapy is the most expensive option and that DiVinci machines and IMRT equipment have a much higher return on their investment. But in the best interests of patients, how is it that this paper was only able to cite one study on PBT? It's been in use for over 18 years.

    If the future of proton beam therapy weren't extraordinary and promising, MAYO clinic wouldn't be dumping 300 million into two new facilities right now.