Loading...

Sonso's Recent CancerCompass Activity

  • Sonso has replied to a post on the message board

    Statistics let you know what your normal expectancy should be; while there are outliers, your chance of being one (by definition) is slim.  There are many reasons for hope if you've been diagnosed with GBM (most especially the new polio virus trials), but you should also be realistic.  I was just at a big brain tumor march, and there were some exciting survival stories, along with many 'in loving memory of'...

    May 05 at 9:51 PM view post
    • Sonso has replied to a post on the message board

      What does the MRI show? Could be swelling of the brain causing the problem. Radiation inflames the tissue.

      January 22 at 9:43 PM view post
      • Sonso has replied to a post on the message board

        Perhaps you have willfully misread my intent, but "positivity" can often be mumbo-jumbo, which isn't helpful when dealing with a terminal disease (yours or someone else's). It is to be encouraged and lauded that people are hopeful, but I have too often seen that hope expressed as denial. It shows courage and love to deal honestly with terminal illness, and one of the actions that evinces that is to be honest and f...

        January 19 at 5:13 AM view post
        • Sonso has replied to a post on the message board

          Not a doctor, but GBM is most serious brain cancer diagnosis. Surgery is intense, and not recommended for someone of such an advanced age. Even the chemo & radiation is very difficult. Could be 3-6 months, but could also be sooner. Say all that you want to say NOW.

          January 19 at 3:54 AM view post
          • 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, 2014 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, 2014 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, 2014 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
                      Loading...
                      Load more activity
                      Loading more activity

                      About Sonso

                      Caregiver
                      Brain Cancer, Lung Cancer
                      Clinical Trials and Research

                      Younger brother of GBM4 patient

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.