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csprings99's Recent CancerCompass Activity

  • csprings99 has replied to a post on the message board

    Hi Barb, I just saw your January note. I had all but abandon the site as I felt the door had closed. I am also a "one of" case and even my oncologist said he couldn't do anything for me because there weren't enough clinical studies anywhere for him to even try anything new (like Keytruda).  I was thinking that if there were enough of us, maybe we could do somekind of clinical trial of something (drug). The do...

    September 02, 2016 view post
    • csprings99 has replied to a post on the message board

      Barb, Would love to and looked at your last instructions, however under MESSAGES I am not showing any private messages. I am checking the MESSAGES link under my HOME page. Help please! Thank you for remembering me, Dwight

      September 01, 2016 view post
      • csprings99 has replied to a post on the message board

        Hi Barb, I wanted to get back with you on your last entry. First- thanks for being a sounding board. It really helps. My wife is a retired surgical RN and great medical advocate but with my other conditions (Parkinson's, neck dystonia, fractured foot, and upcoming eye surgery, she is close to being overwheimed). I have an oncologist at the Rocky Mountain Cancer Center and he has referenced the Cleveland Center severa...

        February 03, 2016 view post
        • csprings99 has replied to a post on the message board

          Debbie, No. I don't see it either. I noticed that the icons/links beside my messages are different from everyone else's. Hope that is a website design issue and not something else. Dwight

          February 02, 2016 view post
          • csprings99 has replied to a post on the message board

            Hi Debbie I am a male with EPMD in the same general area. Is your surgeon a MOHs surgeon or will he be using the Moh's procedure? That procedure takes tissue samples as they progressively remove the effected area. That process allows them to take the minimum amount of skin. Now here is the downside to surgery for EPMD, my Moh's surgeon gave me 20-30% chance of success. That wasn't high enough for me to let them remo...

            January 31, 2016 view post
            • csprings99 has replied to a post on the message board

              Barb, Thank you for your kind note. Would have responded yesterday but was reeling from a call from MD Anderson on my cancer. They can't offer anything that I haven't already trled. I also turned down surgery for many of the same reasons (although my surgeon said the skin graft wouldn't hold because of the required skin movement in the effected area). If you have an Aldara routine that seems to keep the Padgets contr...

              January 28, 2016 view post
              • csprings99 has replied to a post on the message board

                Barb, My misunderstanding. From the initial indications I thouoght the group was focused on exchanging knowledgable physicians names, treatment centers, treatment successes/failures and general experiences. If there is such a site, then please pass it on.Definitely not interested in anyone's intimate details. The documentation I've read indicates there are 78 reported cases in the world. Was just trying to make ...

                January 26, 2016 view post
                • csprings99 has replied to a post on the message board

                  Hi Barb, Sounds like you are doing the same thing I am for treatment. I saw someone here on this site had success with radiation/chemo. I know what you mean about being a Guinea Pig. We are making arrangements to go to MD Anderson to get an evaluation. I am cautiously hopeful. My email is  if you need it for setting me up on the FB site. Thanks, Dwight

                  January 25, 2016 view post
                  • csprings99 has replied to a post on the message board

                    Hi Barb, I am new to this forum. My EPMD is in my perineum and I am a man in my early 60's. I was diagnosed in 2004 and have a lot of experience with treatments, including Aldara, radiation, lazer-photo absorbtive therapy, cryo freezing the area, and effudex. I've ruled out MOH's surgery as the surgeon only gave me a 20% success rate. I've used Aldara three times. It is tricky. First reports were clean but 6 mo late...

                    November 21, 2015 view post
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