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Sonso's Recent CancerCompass Activity

  • Sonso has replied to a post on the message board

    Not a nurse; just someone who has been hit with this in loved ones.  Not a unique set of circumstances these days.

    May 16 at 8:38 PM view post
    • Sonso has replied to a post on the message board

      You didn't do anything wrong; this isn't even remotely like smoking or obesity.  There is so little actually known about brain cancer (it is monumentally complex), and we are only just getting to the very basic mechanics of treatment.  Great strides in surgery have been made, but that is only a first step.  I have been there (brother died of GBM, I know others, too).  There is nothing more importa...

      May 08 at 5:01 PM view post
      • Sonso has replied to a post on the message board

        GBMs are all stage 4.  Prayer is a nice thought (like all good wishes), but I always advise a period of sober reflection and communication with your loved ones.  I am tending to several folks with advanced dementia and it is similar to what you see with GBM as it advances.  Communication becomes very difficult.

        May 08 at 1:47 PM view post
        • Sonso has replied to a post on the message board

          Would be very interesting to know what the actual original dx was for this survivor.  Sometimes tumors progress from Stage 3 to 4 and sometimes they stay at 3.  GBM is stage 4 and the only person I knew who was an actual longterm survivor was 10 years in, and was quite an outlier.  5 years is considered amazing.  That said, there are interesting advances being made all the time (Musella ABTA keep ...

          June 02, 2013 view post
          • Sonso has replied to a post on the message board

            While prayer is individual and if it works in your personal space, go right ahead. However, I will reiterate that the most important thing is to clear your mind with respect to your loved ones who are actually here. Don't avoid the reality while you work on your treatment.

            May 30, 2013 view post
            • Sonso has replied to a post on the message board

              Your situation is not uncommon.  GBM is one of the toughest forms of cancer, as it robs you of the person before it takes the body.  I think you did the right thing in treatment, but there is really nothing at this stage that is a guarantee of a beneficial outcome.  Most of us understand and sympathize with your situation, and wish for you peace and lack of guilt.  As for oncologist not calling ba...

              March 24, 2013 view post
              • Sonso has replied to a post on the message board

                Exactly.

                February 24, 2013 view post
                • Sonso has replied to a post on the message board

                  There is quite a standard deviation with regard to GBM IV, but it is extremely rare to go beyond 2 years (as noted).  For all who have relatives, please have the heart-to-heart talks that will make ALL the difference when your loved one has thrown off the moral coil.  I return here occasionally to try to hammer this message home.  Put your positive thoughts into verbal (and, if possible, physical) acti...

                  February 24, 2013 view post
                  • Sonso has replied to a post on the message board

                    It is comforting to hear people doing reasonably well on the standard treatment, and I have found that almost everyone who benefited from Avastin wished they had taken it sooner.  That said, please remember that most of the treatments are showing Quality Of Life improvements, not extended survival times.  If you have had excellent MRI results, that is great, but do not avoid the critical life discussions an...

                    February 13, 2013 view post
                    • Sonso has replied to a post on the message board

                      This poster is correct about the multitude of variables.  I will on emphasize, as before, please, please, PLEASE, have the deep, meaningful conversations that are necessary about end-of-life, NOW!  This does not mean that you are conceding that death will come soon, but come it will (1 year, 2 years, maybe 10 years).  With a clear head & heart you and your loved one will have a much greater chance ...

                      November 17, 2012 view post
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                      About Sonso

                      Caregiver
                      Brain Cancer, Lung Cancer
                      Clinical Trials and Research

                      Younger brother of GBM4 patient

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