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Reellucky's Recent CancerCompass Activity

  • Reellucky has created a new message board discussion

    Went for almost 3 years on Sutent cancer free taking 50 mg four weeks on two weeks off. Then a tumor appeared on my left lung which eroded into my number seven and number eight rip causing a fracture. I'm about halfway through focused radiation treatments to help the ribs heal. My oncologist feels that I should probably stay on Sutent but the side effect of the anal sphincter shrinking and painful bowel movements ha...

    September 03 at 4:58 PM view discussion
    • Reellucky has replied to a post on the message board

      Hi bjsell, Sorry to hear about the new met on your lung.  Did that appear before or after you modified you dose of Sutent? I havent resolved my constriction issue, but I have learned how to manage it more or less.  Because of the super-liquid diareah which I get around the end of week 4 when the constriction hits, I do a balancing act using just enough anti-diareah pills (1/2 pill at a time) to keep the r...

      March 14 at 10:02 PM view post
      • Reellucky has replied to a post on the message board

        Just passed my 2 year anniversary on Sutent 50mg/4on/2off and I am now NED (NO EVIDENT DISEASE!!!).  The 4 mets that appeared on my lungs after 1.25 years following kidney removal are now so small that they do not even show up on a ct scan.  Cant say the side effects are not noteworthy, but given the alternatives, I have told my oncologist I can live with them 30 or 40 more years (I'm 59).  BTW, that i...

        February 04 at 11:17 PM view post
        • Reellucky has replied to a post on the message board

          Hey Lynn, I am in San Diego, CA.  I have been on the 4 on, 2 off schedule with Sutent for 2 years this month.  I have an external hemoroid/leision which also bleeds a fair amount when the sphinkter issues happed late in Week 3 on into early Week 1 off. I saw several postings on Cancer Compass about people saying their tumors returned after going off Sutent for a breaks and the tumors seemed to be resistan...

          October 30 at 10:29 PM view post
          • Reellucky has replied to a post on the message board

            Lynn,  Misery loves company and I really you reaching out to me with your story. Surgery?  Wow....keep me posted if you go that route.  My GP doctor have me a prescription for a solution called Enulose....2 tbl 2x a day.  It tastes like caro syrup, kinda sweet, but it it loosens stools close to diarhrea but without the acid or cramping.  Basically it makes the couch more like a pillow to sho...

            October 29 at 10:19 PM view post
            • Reellucky has replied to a post on the message board

              Thanks for the Response.  The other posting I read said they felt like they had a "tearing" action during their bowel movement causing the bleeding.  I think the vaso-constricting nature of Sutent is affecting my sphinters ability to open.  I had the too loose stools side-effect, which was actually more like uncontrollable projectile diahrea along with really bad heartburn until I started regular use o...

              October 13, 2013 view post
              • Reellucky has created a new message board discussion

                Ok, this is a sensitive topic.  Those of you who do NOT have this side effect, if you dont want to worry about it, stop reading this posting now.  You definately do NOT want it. Until I recently saw another posting which a short reference to this problem, I thought it was unique to me.  Thank GOD for Cancer Compass!  Hopefully some of you have found ways to deal with it and will share them here. ...

                October 12, 2013 view discussion
                • Reellucky has replied to a post on the message board

                  I just looked back at the other responses and want to add my STRONG recommendation that you not go more than 6 months without a CTScan over and above any blood tests.  When my cancer spread to my lungs, it went from not showing up at all on a scan, to the tumors, some the diameter of a quarter in ONLY 4 MONTHS!  Getting me on Sutent quick knocked the tumors down before they took hold and shrank all 4 of the...

                  October 08, 2013 view post
                  • Reellucky has replied to a post on the message board

                    Oneless, I agree with Phantasm totally. Contact your local cancer society office or if any of your hospitals have a cancer center, ask for names of doctors who specialize in Kidney Cancer.  Staying with a general med doctor for advice on your cancer would be like asking your local lube and tune to install a new engine in your car. :) My chemo pills (Sutent) require that I take one pill a day for 4 weeks, then...

                    October 07, 2013 view post
                    • Reellucky has replied to a post on the message board

                      Thanks Peggy.....my motto is....If it works...don't fix it! I can live with Sutent side effects till it stops working and i am watching all those new meds coming out every month that give me lots of hopes for options in the future. Charlie

                      October 06, 2013 view post
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