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mulls427's Recent CancerCompass Activity

  • mulls427 has created a new message board discussion

    Has anyone been to UC Davis Center for Voice and Swallowing? I would be coming from Philly to Cali. but no help here for radiation destroyed epiglottis here. Thanks, Mike

    August 14 at 4:36 PM view discussion
    • mulls427 has replied to a post on the message board

      Hi Art, I thought I'd chime in some being seven years down the road of BOT treatment. Although pronounced "Cured",radiation damage significant,and has continued to the point that I am back on the feeding tube permanent. I would check into Proton radiation as it is pro ported to cause significantly less after effects. Good luck and God bless, Mike

      June 19, 2013 view post
      • mulls427 has replied to a post on the message board

        Hi all, Thanks so much for all your good wishes and suggestions! I saw the Director of speech and swallowing at the U of P yesterday. They did my swallow tests but no luck. Stuck with peg feeding forever. It seems radiation does just keep giving;a problem with longer term survivors. I'm 7 years out and epiglottis is basically nonexistent at this point. They have not discovered a repair yet but are working on...

        February 16, 2013 view post
        • mulls427 has replied to a post on the message board

          Wow Carolyn you give me great hope! I had squamous cell base of tongue treated 2005. Problem with aspiration just happened 11/12. Failed swallow tests then and have been npo since and using peg tube. I head to U of P Friday to see if I have a chance at eating normal again. Thanks for your response. Mike

          February 09, 2013 view post
          • mulls427 has created a new message board discussion

            Any survivors with this ? I'm seven years out and now back on peg tub and nothing by mouth. Would appreciate any education to help.

            February 07, 2013 view discussion
            • mulls427 has replied to a post on the message board

              May I commiserate Rick? Although I am very gratefull to still be around after seven years since treatment; I just can't adjust to the "New Normal" position we all deal with. I guess my biggest beef is not being prepared for all the after effects. Chemo was a breeze compared to the radiation damage that is ever continuing and non healing. I try to console myself with realizing how blessed I am to be given the years of...

              October 10, 2012 view post
              • mulls427 has replied to a post on the message board

                Congrats Steph :)) Keep up the good work!! Now almost seven years out and due for a PET scan by the years end and comiserate with your feelings about going again. Mike

                September 04, 2012 view post
                • mulls427 has replied to a post on the message board

                  Hi Avi, I am a 6.5 year survivor of squamous cell base of tongue with spread to lymph node left side of neck. In addition to the cisplatin and 5fu; taxotere was also added to the chemo cocktail mix. I had found a study using that mix with significantly good results. I also was imrt radiated to those areas. Since already using cisplatin and 5 fu I would suggest you ask his medical oncologist about the addition of tax...

                  May 26, 2012 view post
                  • mulls427 has replied to a post on the message board

                     Yes Pop-Pop that thread says Dave passed. I also saw where he friended someone May 1. I sure hope he is just lurking lololol; very depressing if the other!! He has been very quiet and not a lawyer's profile. Take care! Mike

                    May 09, 2012 view post
                    • mulls427 has replied to a post on the message board

                      Hi Everyone, I am now facing the prospects of surgical removal of at least four teeth. I had an examination and consult with an oral surgeon just today. Will be facing the use of the hypobaric oxygen chamber before and after for healing. Approaching the seven year mark cancer free and I guess fortunate to have kept them this long. There is also a spot of necrosis on the jaw bone which I have to admit is concerning f...

                      May 09, 2012 view post
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                      About mulls427

                      Survivor
                      Head and Neck Cancer
                      Acupuncture, Clinical Trials and Research, Diagnostic Imaging, Image Enhancement, Photodynamic Therapy, Side Effects, Supplements, Support

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