Brother recently diagnosed; journey begins with proton radiation therapy & chemo


greetings, my brother is 64 years old, HIV survivor for over 30 years and very lucky to have minimal complications over the years from having HIV. T cell counts over 500 and viral load non-existant, as of Dec 2014, even tho he was having some 'hemmoroid' problems. Anal abscesses prevented delays in diagnosis for anal scc tumor. he qualifies for proton radiation...anyone experienced that yet? it is apparently more targeted than traditional x-ray radiation, less burning of healthy tissue (and hopefully less exterior burns!). 


  • mp327
    mp327 Member Posts: 4,440 Member

    I'm very sorry to hear of your brother's diagnosis.  It's great that you came here for information on his behalf.  I was treated with Intensity Modulated Radiation over 6 1/2 years ago, so I can't give you any information about proton radiation, except to say that it seems to be the coming thing in radiation therapy.  Perhaps some of our other posters have had that type of treatment and can give you some information.  I wish the very best to your brother and hope you'll keep us posted on his status.


  • tanda
    tanda Member Posts: 174 Member
    Helping my brother

    I am currently receiving  proton radiation with a pencil beam.  I have just finished my third week and my bottom is beginning to become sore.  As both the bowel and the bladder are in the field, I am spending more time than usual in the bathroom.  I feel ok.  Effects of radiation are cummulative and I have been told that the last 2 weeks and maybe a month and a half after words will be the worst.  Of course, everyone reacts differently to these treatments.

    I also had one infusion of mitomycin and am taking Xeloda (capecitabine) which is 5FU in pill form.  I "may be getting another mitomycin infusion.

    The concurrent chemoradiation has made me quite tired; so far, I haven't had any nausea or vomiting or strong pain.

    Hopefully this protocol should be less toxic and, I hope, as effective as the standard.


  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Sorry that he has to go through this.

    I know how valuable those goofy brothers are. When mine died several years ago (not from cancer), it was the most devastated I've ever been in my life. It was much worse then when either of our parents died. So, hang on tight to him and help him along as much as you can. I'm so jealous and happy for you that you still have yours!

    The University of California at San Francisco is renowned for anal cancer treatment and they have a real speciaty in treating HIV+ patients. This is their anal cancer site - it's crammed full of information. If need be, I understand that you can arrange for a telephone consult if they are too far away from you. Make sure that your brother's medical team is familiar with this info.