Proton Therapy

Freida
Freida Member Posts: 182
in Esophageal Cancer #1
Hi
I'm trying to understand all the different possible options out there so that when we go to M D Anderson I can ask the right questions and understand (as far as possible) the responses. Has anyone here had proton therapy rather than regular radiation? I have been reading about it and it sounds like a good option for Bill if he is eligible. He already has some heart and lung damage from a blood clot, so the idea of a targeted therapy that will minimize damage to surrounding organs is appealing.
Freida

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
    Frieda,
    Who are you going to
    Frieda,

    Who are you going to see at MD Anderson - the oncologist?

    Cindy
  • Freida
    Freida Member Posts: 182
    #3
    unclaw2002 said:

    Frieda,
    Who are you going to
    Frieda,

    Who are you going to see at MD Anderson - the oncologist?

    Cindy

    We don't know yet. Our
    We don't know yet. Our family doctor is setting up appointments for us and organizing for the tests done to date to be sent there. Hoping to hear this week.
  • AngieD
    AngieD Member Posts: 493
    #4
    Freida said:

    We don't know yet. Our
    We don't know yet. Our family doctor is setting up appointments for us and organizing for the tests done to date to be sent there. Hoping to hear this week.

    Freida,There is a woman on
    Freida,
    There is a woman on another EC site that just finished Proton Therapy at MD Anderson this fall and was very pleased with it and the results. She also had her chemo continued while she was there. Her name is Deborah and she posts on the EC section of dailystrength.org as dnance12. She is very happy to talk about her experience.
    Angie
  • Lou67
    Lou67 Member Posts: 2
    #5
    Hi, Freida
    I am now in the
    Hi, Freida

    I am now in the middle of my 9th week of proton therapy treatment (3 more days to go but who is counting!). After being diagnosed with prostate cancer, I was scheduled for surgery, but, at the urging of my PCP, called a time out to do some research beyond the surgery my urologist was advocating. After extensive research, including conversations with Loma Linda Medical Center and personal trips to the Mayo Clinic as well as MD Anderson, I opted for Proton Beam therapy (given that I live in the Chicago suburbs, my treatments have been at the Procure Proton facility in Warrenville which is affiliated with Central Dupage Hospital). While there would have been no right or wong answer for me given my personal medical profile, I selected proton beam therapy as the treatment modality that would provide curative results at least equal to the other alternatives while minimizing the possibility of undesirable side effects.

    If you haven't run across it already, you should consider reading "You Can Beat Prostate Cancer....and You Don't Need Surgery to Do It" by Robert J. Marckini. It helped me to take all of the information I accumulated and process it into the right decision for me.
    Hopefully it will help you and your husband in your decision journey. I also greatly valued the time I spent at MD Anderson at their proton center. Their reputation as a world class cancer center combined with their "seal of approval" of proton therapy and the time I spent with them carried the day for me. When you are there in person, you'll see how very thorough they are. Let me also note that if you are in the Chicago area, the Procure Proton facility here is first rate as well...the doctors were terrific in laying out the alternatives for me...and, having been through 41 treatments, I have nothing but the highest words of praise for the entire staff (which is important since you see your technical therpists and nurses more than the doctors). While the Mayo Clinic does not currently have a proton facility, they are in the process of builiding two of them (for me, another solid endorsement).
  • Freida
    Freida Member Posts: 182
    #6
    Lou67 said:

    Hi, Freida
    I am now in the
    Hi, Freida

    I am now in the middle of my 9th week of proton therapy treatment (3 more days to go but who is counting!). After being diagnosed with prostate cancer, I was scheduled for surgery, but, at the urging of my PCP, called a time out to do some research beyond the surgery my urologist was advocating. After extensive research, including conversations with Loma Linda Medical Center and personal trips to the Mayo Clinic as well as MD Anderson, I opted for Proton Beam therapy (given that I live in the Chicago suburbs, my treatments have been at the Procure Proton facility in Warrenville which is affiliated with Central Dupage Hospital). While there would have been no right or wong answer for me given my personal medical profile, I selected proton beam therapy as the treatment modality that would provide curative results at least equal to the other alternatives while minimizing the possibility of undesirable side effects.

    If you haven't run across it already, you should consider reading "You Can Beat Prostate Cancer....and You Don't Need Surgery to Do It" by Robert J. Marckini. It helped me to take all of the information I accumulated and process it into the right decision for me.
    Hopefully it will help you and your husband in your decision journey. I also greatly valued the time I spent at MD Anderson at their proton center. Their reputation as a world class cancer center combined with their "seal of approval" of proton therapy and the time I spent with them carried the day for me. When you are there in person, you'll see how very thorough they are. Let me also note that if you are in the Chicago area, the Procure Proton facility here is first rate as well...the doctors were terrific in laying out the alternatives for me...and, having been through 41 treatments, I have nothing but the highest words of praise for the entire staff (which is important since you see your technical therpists and nurses more than the doctors). While the Mayo Clinic does not currently have a proton facility, they are in the process of builiding two of them (for me, another solid endorsement).

    Thank you Lou. There is
    Thank you Lou. There is actually a proton therapy place in Oklahoma City (about 2 hours from where we live), one of just 7 in the country I believe. Once we have been to M D Anderson we will need to figure out if we want to do treatments in Houston (whatever the treatments might be), or if we will try and do them locally. In one way it would be nice to be local, but if the proton therapy is an option and has to be done every day - then we will either have a 4 hour round trip every day to OKC, or will stay in Houston. With his other health problems (heart and lung damage from a blood clot, Diabetes, other stuff), I do want to be at the best place possible.

    I have read that the side effects from proton therapy are fairly minor compared to regular radiation. have you found this to be the case?
  • Freida
    Freida Member Posts: 182
    #7
    AngieD said:

    Freida,There is a woman on
    Freida,
    There is a woman on another EC site that just finished Proton Therapy at MD Anderson this fall and was very pleased with it and the results. She also had her chemo continued while she was there. Her name is Deborah and she posts on the EC section of dailystrength.org as dnance12. She is very happy to talk about her experience.
    Angie

    Thank you Angie. I did go
    Thank you Angie. I did go and sign up and read her posts. Bill is retired and on medicare and it sounds like medicare is more willing to pay for proton therapy than some private insurance companies. Hopefully that will be the case, assuming he is an eligible candidate. I was surprised to read that dnance12 was opting not to go for surgery after the therapy. I thought that was the only real chance of a "cure" for this horrible thing.
  • Lou67
    Lou67 Member Posts: 2
    #8
    Freida said:

    Thank you Lou. There is
    Thank you Lou. There is actually a proton therapy place in Oklahoma City (about 2 hours from where we live), one of just 7 in the country I believe. Once we have been to M D Anderson we will need to figure out if we want to do treatments in Houston (whatever the treatments might be), or if we will try and do them locally. In one way it would be nice to be local, but if the proton therapy is an option and has to be done every day - then we will either have a 4 hour round trip every day to OKC, or will stay in Houston. With his other health problems (heart and lung damage from a blood clot, Diabetes, other stuff), I do want to be at the best place possible.

    I have read that the side effects from proton therapy are fairly minor compared to regular radiation. have you found this to be the case?

    The Proton Beam facility I
    The Proton Beam facility I have been going to for treatments in the Chicago suburbs is operated by the same company (Procure) as the one near you in Oklahoma City. I believe yours in Oklahoma was their first facility.

    As to any side effects for me, so far, so good, with nothing negative experienced. I've become acquainted with my fellow prostate cancer patients who are scheduled before and after my daily time slot (just talking in the waiting lounge)...and haven't heard any of them complain of adverse effects either. The Marckini book I mentioned has some relevant statistics based on years of experience at Loma Linda (the longest running proton program)which I believe you will find interesting and very encouraging as compared to alternative courses of treatment.

    Based on my personal experience, I'm very positive about proton therapy. Visitors sitting in the waiting lounge always remarks how positive everyone is. My fellow patients are uniformaly glad they are that they found their own way to proton treatment, all on very similar thought paths....quite remarkable.
  • Freida
    Freida Member Posts: 182
    #9
    unclaw2002 said:

    Frieda,
    Who are you going to
    Frieda,

    Who are you going to see at MD Anderson - the oncologist?

    Cindy

    Cindy
    We found out today we
    Cindy
    We found out today we are seeing a Dr. Ho. I vaguely recall having seen him mentioned by someone on a thread somewhere, but can't find the post (may not even have been this site, but I thought it was)
    Freida

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