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daddydeckhand's Recent CancerCompass Activity

  • daddydeckhand has replied to a post on the message board

    Margie please find our Facebook IL2 and let's talk story there.  I am Lorelle, Sandy's caregiver and am happy to discuss all of the preparations, side effects and anything else.  We were given Affinitor, however you cannot be on ANYTHING for months if you are going to give IL2 a try.  You have to be healthy enough to withstand the side effects.  Hope to see you on our FB site.

    February 28, 2015 view post
    • daddydeckhand has created a new message board discussion

      Just finished up my second go around with IL2.  I tolerated 11 out of 14 the first week and am going home tomorrow after 9 doses.  My fiance has started in IL2 "The Experience" on Facebook where those who are considering the treatment might want to take a look.  There is also a WONDERFUL Kidney Cancer Warrior Facebook that is totally awesome just wanted to put that out there for anyone interested. &nbs...

      February 12, 2015 view discussion
      • daddydeckhand has replied to a post on the message board

        Looking for a blog on Interleukin that is current.  I see the posts stopped in 2011?  We have bought a year on Sutent but it has stopped working and now it is either Interleukin L2 or Affinator.  Is there anyone out there still connected to this blog and if so please give us a shout out.  Mahalo from the big Island, Sandy and Lorelle

        September 29, 2014 view post
        • daddydeckhand has replied to a post on the message board

          Thank you and God bless you and yours....

          August 23, 2014 view post
          • daddydeckhand has replied to a post on the message board

            We are now officially off of Sutent and awaiting the arrival of Afinitor from the VA.  Thank you everyone and God Bless for all your prayers.  The sutent worked so well for a good solid year so I have already beat the odds.....

            August 23, 2014 view post
            • daddydeckhand has replied to a post on the message board

              Don't know yet have an appointment later this month however,the oncologist wanted to advise to NOT start the next round of Sutent.  At least there will be some respite from the hand/foot syndrome as the last regmen was the worst suffering in the entire year on the feet, the pain being unabated unless a pain pill was taken.

              August 08, 2014 view post
              • daddydeckhand has replied to a post on the message board

                Brain, bone and ct yesterday along with the yearly MRI.  Oncologist called today, no more Sutent he says don't bother taking it, it has stopped working.....

                August 07, 2014 view post
                • daddydeckhand has replied to a post on the message board

                  Just wanted to throw something up there.  I am doing pretty well, mets still holding 50% of size after taking Sutent.  Now on a lower dosage of 37.5 and CT shows no change in mets and the last large one has been slowly shrinking.  The blisters are ALMOST bearable and the udder butter works great.  Hot showers hurt feet however the hot tub make them feel great for some reason.  We have also re...

                  May 02, 2014 view post
                  • daddydeckhand has replied to a post on the message board

                    We are on our sixth round of Sutent with the 50% shrinkage remaining since last summer.  The one lesian that went from 1.9 to 2.1 is now down to 1.7 so only major side effect is the blisters on the feet and fingertips and taste bud issues and some arthitic like pain in my shoulders and hands.  But considering I am 62 working almost full time, I am grateful for every day I come home to my family.

                    March 03, 2014 view post
                    • daddydeckhand has replied to a post on the message board

                      Ordering now.....thank you so much everyone!  My feet and hands are the first indicators of side effects when I am on my 28 day on 14 day off cycle.  Ordering shea butter right now.  God Bless

                      March 03, 2014 view post
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                      About daddydeckhand

                      Patient
                      Kidney Cancer
                      Cancer Treatments

                      Aloha from Hawaii I am a 62 year old Sportsfisherman who had my kidney removed in 2008. In January 2013 my renal cancer returned to my lungs and pancreas and I have been on Sutent since July of 2013. At first I was on 50mg 28 on 14 off but my feet had terrible blisters, however a small price to pay, all my tumors shrunk 50% and holding so I am now on 37.5 and still holding. I will be starting my seventh cycle of Sutent Tumors and lesions stayed 50% shrunken. Found out today, August 7 that Sutent has stopped working and that my lesions have grown so now I am going to start Afinitor and hopefully buy a whole lot more of quality time!

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