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MargaretS's Recent CancerCompass Activity

  • MargaretS has replied to a post on the message board

    Dear KB-Austin - I am sorry to hear that you and your husband is going through this and that his tumor is growing.  I am wondering whether he has tried Optune. Also, did your husband do Temodar daily on the standard dosage? Was genomic testing been performed on the tumor?  That was how we were tipped off to the possibiliy of Torisel.  I really do feel that daily Temodar and Optune saved my husband.&n...

    June 07 at 8:06 PM view post
    • MargaretS has replied to a post on the message board

      Your brother is not a statistic!  At this point it is impossible to predict how much time he has. My 65-year-old husband's tumor is also unmethylated and IDH negative.  His first NO didn't think he would last a year, but he has made it more than 30 months since diagnosis.    The key thing is finding a NO who is nimble and aggresive.  We have gone through two resections and various treatments...

      September 05 at 7:21 PM view post
      • MargaretS has replied to a post on the message board

        Dear TwinMama - My husband was diangosed with giant cell (GC) GBM in 1/2016.  He was initially treated with surgery, hypofractionated radiation and an experimental immunotherapy, but no chemo because his tumor was unmethylated.  After a second resection in 11/2016, he started on Optune and Keytruda.  After new growth in October 2017, he began on TMZ and a renal cancer chemo because of a genetic mutati...

        September 05 at 6:56 PM view post
        • MargaretS has replied to a post on the message board

          My husband has had brain bleeds following each of his two  resections.  Each time, i thought he had a recurrence because his symptoms worsened so.  Because he is on blood thinner, draining was not feasible; nature had to take its course.  After the blood was resorbed, he was good.

          May 28, 2018 view post
          • MargaretS has replied to a post on the message board

            Statistics are not going to give you the answers you need.  Your best bet is to try to get Optune for your dad as soon as he finishes radiation therapy.  Val-083 has also shown some promising results.  Immunotherapy has had mixed results.  Bottom line is that there is no magic bullet. It 's more like whack-a mole.

            January 08, 2018 view post
            • MargaretS has replied to a post on the message board

              Statistics are not going to give you the answers you need.  Your best bet is to try to get Optune for your dad as soon as he finishes radiation therapy.  Val-083 has also shown some promising results.  Immunotherapy has had mixed results.  Bottom line is that there is no magic bullet. It 's more like whack-a mole.

              January 08, 2018 view post
              • MargaretS has replied to a post on the message board

                Kirsty - Necrosis is great; it means something is working.  Congratulations!

                December 28, 2017 view post
                • MargaretS has replied to a post on the message board

                  My 64-year old husband was diangosed with GBM (unmethylated and IDH negative) on 1/1/16. His first NO did not expect him to last a year. He had a resection, RT, immunotherapy but no chemo and has used Optune continuously since December 2016 with a compliance rate consistently over 90%.  He is doing well.  Yesterday, he biked up to the hospital for his MRI - a roundtrip of 30 miles. Array changes, scalp tre...

                  November 01, 2017 view post
                  • MargaretS has replied to a post on the message board

                    I think giant cell GBM does confer some survival benefits.  My husband was diagnosed with giant cell glioblastoma on 1/1/16, unmethylated and IDH negative.  Has been treated with a resection, hypofractionated radiation, immunotherapy and Optune.  He has had some scary MRIs that looked like re-growth (including yesterday's) but were pseudoprogression, treatment effects or edema, instead. For those out...

                    November 01, 2017 view post
                    • MargaretS has replied to a post on the message board

                      My husband has been getting tri-weekly infusions of Keytruda since early December (seven or eight infusions).  From March until October of 2016, he was in a clinical trial of another PD-1 blocker.   My husband's tumor is in the left temporal lobe. Genetic testing indicates that the tumor is sensitive to Keytruda and it appears to be keeping it from growing.  However, both immunotherapies have caused p...

                      May 10, 2017 view post
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