NPC and Proton Radiation....

phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1
I've been reading about Proton Rads...has anybody gone this route instead of the IMRT? Everything I'm reading says it's as effective as IMRT, but with less damage to surrounding tissue, as well as less side effects during and down the road.

My insurance will cover at 3 or 4 places that offer it, yet all are far away from home...

p

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Proton

    I looked into it at Loma Linda when my NPC came back a third time but was told no more radiation for me. I do believe it is a lot better but never try it to really say.

    Hondo
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    unkown
    we know that imrt is certainly better than the previous radiation after seeing and hearing the results. Proton certainly could be better, there just does not seem to be enough experience history to say it is better. if there was a certainty it was better we would hear in news and most assured be talked about here.

    i too can not have anymore radiation so i would love to hear the research people come up with something else to use for treatment after radiation is no longer an option.

    i do not know what i would choose if i had to make a choice now imrt or proton. i know it would be hard if there was too much unknown.

    john
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    I called Procare in Oklahoma City...
    and a radiologist is supposed to be calling me back this afternoon. They've done a lot of Proton Rads with prostate cancer, but I keep finding it mixed in with the HNC cancers, too...those hard to get at places....

    The intake nurse pretty much said, it depends on where exactly the tumor is...how big the lymph nodes are...Stage, etc...they aren't going to call me back and say "come on in". I have an appointment with the radiologist here next Thrusday, anyway.

    I just thought IF there was a way to avoid as much damage as I could, I want to explore it...radiation is what is scaring me the most...

    p
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #5
    phrannie51 said:

    I called Procare in Oklahoma City...
    and a radiologist is supposed to be calling me back this afternoon. They've done a lot of Proton Rads with prostate cancer, but I keep finding it mixed in with the HNC cancers, too...those hard to get at places....

    The intake nurse pretty much said, it depends on where exactly the tumor is...how big the lymph nodes are...Stage, etc...they aren't going to call me back and say "come on in". I have an appointment with the radiologist here next Thrusday, anyway.

    I just thought IF there was a way to avoid as much damage as I could, I want to explore it...radiation is what is scaring me the most...

    p

    is proton radiation the same as brachytherapy?
    my mom may get brachytherapy for tongue cancer becasue she already had regular radiation a year ago. If this is the same I would love to find out more becasue I only know a little. I will not go into details as my mom's case is a little more complicated.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    joannaw81 said:

    is proton radiation the same as brachytherapy?
    my mom may get brachytherapy for tongue cancer becasue she already had regular radiation a year ago. If this is the same I would love to find out more becasue I only know a little. I will not go into details as my mom's case is a little more complicated.

    No it is not
    Proton therapy is from an external source, beaming a heavy particle. It is similar to the radiation obtained from current external source therapy, just using a different source, and obtaining a proton rather than a photon. In theory, the advantage of this treatment compared to what is being done now is that less energy is given off in areas other than the target area, which would further spare damage to tissues that we don't want injured, while maximizing energy delivered at the target (cancer).

    Brachytherapy, otoh, is obtained by locally implanting a device (a seed, cylinder, needle, or whatever) that simply sits in place right in/on/next to the cancer and delivers its very intense dose from that point, internally, onward. It is commonly used in certain female cancers, such as cervix and uterine> It is not commonly used in head and neck cancers.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    joannaw81 said:

    is proton radiation the same as brachytherapy?
    my mom may get brachytherapy for tongue cancer becasue she already had regular radiation a year ago. If this is the same I would love to find out more becasue I only know a little. I will not go into details as my mom's case is a little more complicated.

    BTW
    Your mom is not a candidate for proton therapy, because the same rules apply to proton therapy that apply to conventional radiation.
  • piptisoph
    piptisoph Member Posts: 3
    #8
    My husband was just confirmed yesterday of having prostate cancer - gleason score of 6 (3+3) in 3/12 biopsy's.

    Prior to it being confirmed I contacted both Loma Linda and MD Anderson in Houston for information on proton therapy. We are most likely going to be going to Loma Linda to further discuss treatment as our urologist said yesterday that MD Anderson has had some issue lately with rectal bleeding.

    We are at the very beginning stages of research and not convinced of any treatment path yet. My question is, why is this considered new? Loma Linda has been treating using proton therapy for many years and has performed over 15k, stating that they are treating over 150 people a day. From what I have read this has been a treatment course for over 50 yrs, but the expense of equipment etc has kept the availability low. Is this propaganda or a viable treatment course?

    Loma Linda sends out a dvd on the process if you are interested in viewing you can contact them. Our urologist also said that this would be the location he would select if he was going personally with proton therapy... but.. he also said he would select surgery which surprised us, but that is another topic.

    Any input on experience is appreciated
  • jeanseville
    jeanseville Member Posts: 1
    #9
    piptisoph said:

    My husband was just confirmed yesterday of having prostate cancer - gleason score of 6 (3+3) in 3/12 biopsy's.

    Prior to it being confirmed I contacted both Loma Linda and MD Anderson in Houston for information on proton therapy. We are most likely going to be going to Loma Linda to further discuss treatment as our urologist said yesterday that MD Anderson has had some issue lately with rectal bleeding.

    We are at the very beginning stages of research and not convinced of any treatment path yet. My question is, why is this considered new? Loma Linda has been treating using proton therapy for many years and has performed over 15k, stating that they are treating over 150 people a day. From what I have read this has been a treatment course for over 50 yrs, but the expense of equipment etc has kept the availability low. Is this propaganda or a viable treatment course?

    Loma Linda sends out a dvd on the process if you are interested in viewing you can contact them. Our urologist also said that this would be the location he would select if he was going personally with proton therapy... but.. he also said he would select surgery which surprised us, but that is another topic.

    Any input on experience is appreciated

    Proton Therapy and M.D. Anderson
    Hello piptisoph:

    In two weeks I'll be a five year survivor of the proton therapy at M.D. Anderson and with my PSA levels around 0.2. I did not have any bleeding either early or late stage. In fact there are very few who experience early stage bleeding and then another small number who experience late stage bleeding or toxicity as it's called. This is based on what I've learned from about 950 patients who have joined our organization and who let us know how they're doing. The number that's quoted here on ACS in the IMRT section is 10 to 20%. Numbers that were quoted to me 5 years ago was less than 8% will experience this toxicity.

    The scientific and medical community has been conducting clinical trials with high dosage radiation specifically in the last 4 years to yield better mortality or should I say cure results. Loma Linda's
    Dr. Carl J. Rossi publish some results here

    http://www.mclarenregional.org/Uploads/Public/Documents/protontherapy/protontherapyzietman.pdf

    Note in Table 2 entitled Acute and Late Stage GU and GI Toxicity with percentages for greater than Grade 3 toxicity ranging from 13% to 24%.

    The reason I write is that I beleive the M.D. Anderson to be one of the most advanced in equipment and process. In the area of positioning the prostate and lower GI, they continually made improvements for precision and comfort. To read more about the experiences at M.D. Anderson you can look up my site at
    http://protonpals.net

    For more experience on Loma Linda patients, if I were you I'd buy Bob Marckini's book,join his site the Brotherhood of the Balloons and write to him directly conserning side effects. I think you'll find the numbers comparable. http://www.protonbob.com/proton-treatment-homepage.asp

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