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Sonso's Recent CancerCompass Activity

  • Sonso has replied to a post on the message board

    For all who are unfamiliar with the arc of GBM, the standard of care and all modern techniques give better quality of life for the term of the disease, but don't (in general) extend life (very much, if at all).  At the end, there is a rapid fall-off, and hospice/palliative care is best (i.e. don't 'fight' anymore).  Many people get angry when told to 'go home and enjoy the remaining time', but this is the c...

    October 01 at 3:41 PM view post
    • Sonso has replied to a post on the message board

      Slightly off-topic, but there is no question that brain tumor patients are behaviorally quite like Alzheimer's/dementia patients. Memory loss, erratic behavior, mood swings, etc. - brain cancer is a disease for both patient and caregiver. Read Talking to Alzheimer's and read/view everything by Teepa Snow. Things become VERY existential.

      September 07 at 12:25 PM view post
      • Sonso has replied to a post on the message board

        Be careful of church-sponsored quackery.

        August 09 at 12:54 PM view post
        • Sonso has replied to a post on the message board

          Not a doctor, but with only 70% removal, I would avoid the surgery. Folks I have had experience with have had 90%+ and still had short survival periods. You need a successful resection as a prerequisite to longer term survival. Maybe there is a trial for something experimental, or the NovoCure device - check virtualtrials.com

          August 08 at 8:37 PM view post
          • Sonso has replied to a post on the message board

            If they did a full resection then they did a biopsy to determine if it is methylated, etc. in some instances there is "better" (more focused) treatment options. Definitely look at the Musella website and avail yourself of a good oncologists (surgery is very different than the ongoing chemo). A lot of people believe that getting on Avastin earlier is better (along with some of the add-ones that are being tested). ...

            July 17 at 3:15 PM view post
            • Sonso has replied to a post on the message board

              This is a tough one, as it sounds like there are either metastasis or some other collateral problems. Most clinical trials rule out people who are either recurrent or have had the standard-of-care treatments. Alleviation of pain is really important; at this stage you'll need to become not just a loving & caring parent, but also a dispassionate advocate for your daughter's wishes. You know her best, and this will re...

              July 17 at 3:01 PM view post
              • Sonso has replied to a post on the message board

                Radiation and chemo should not really affect the cardiac situation if it's currently under control with medication.  If you can do some yoga-type meditation to reduce the anxiety, the fatigue will lead to sleeping and general lack of stress on the heart.  Be careful about standing up quickly (especially tricky with people who have neuro-cardiogenic syncope - common in older folks) and breath deeply and smoo...

                July 15 at 4:39 PM view post
                • Sonso has replied to a post on the message board

                  AFAIK, there is no known link between vaccination and brain cancer.  In many instances the cancer has been there for quite some time (at a lower grade), and only makes itself known in the latter stages of the disease.  That is one reason it is difficult to find causality.   I agree entirely on the torture; your relationship changes when you are the caregiver.  I have seen the suffering (mental an...

                  July 15 at 4:36 PM view post
                  • Sonso has replied to a post on the message board

                    GBM is a very pernicious disease; it takes the person away from you in a cruel and sadistic way. You can find some research results at VirtualTrials.com (Musella foundation). The problem is that there is a wide spectrum of results, but a narrow standard deviation. I have seen/known older patients who suffered great.y but still wished to try the standard treatment (radiation/Temodar and now Avastin). An additional...

                    July 14 at 1:47 PM view post
                    • Sonso has replied to a post on the message board

                      The doctors have given you the appropriate response. There are averages, and they are not good, but there are also outliers. Your mother should be consulted as to whether the 6 weeks of radiation is something she would want. While it is deeply fatiguing, if she has someone she can trust to do everything for her, it could be an option. With three tumors, it could also be unbearable, and even potentially lead to an...

                      July 13 at 3:07 PM 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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