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Sonso's Recent CancerCompass Activity

  • 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 at 11:10 PM 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 at 1:27 AM 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
                • Sonso has replied to a post on the message board

                  I will say that almost everyone I have spoken to says 'get on Avastin' sooner rather than later.  My brother had the bleeding problem, too, and was also very tired.  The latter could just have been the further progression of the tumor.  He beat the odds, lasting almost 2 years from dx.  The only thing I can compare it to is taking care of an Alzheimer's patient, except that the A-patient can be ph...

                  November 16, 2012 view post
                  • Sonso has replied to a post on the message board

                    Josh, your courage and love is inspiring. It is very important in the long run that survivors know what messages and meanings their loved one wishes to communicate in the future. Children may be belligerent , especially as teens, and can have difficulty with hopelessness. It is important to empathize with the fear and confusion that they have but at the same time to require them to stay connected to the situation...

                    June 23, 2012 view post
                    • Sonso has replied to a post on the message board

                      Sarah, you have said it so well; I can get upset at the sanctimonious nature of some posters here. I am glad you put it in moral terms rather than religious terms, and II think a lot of us would prefer to think that cancer is not part of some divine PLAN. There are loads of events from which we can learn moral lessons, but cancer (GBM in particular) leads us more to philosophical approaches: what is the meaning of...

                      June 23, 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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