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Oct 16, 2018 Latest post:
Mar 2, 2019
Bobby suffered a seizure on June 08, 2018. It was discovered shortly thereafter that he had a tumor in his brain, later diagnosed as Glioblastoma Grade IV. He underwent a complete resection of the tumor on June 14. He was impatient at Shirley Ryan ability lab here in Chicago for rehab for three weeks, followed by outpatient rehab for 2 months... Bobby's surgeon was Dr Chandler and his fabulous oncologist is Dr Dixit..... all at Northwestern in Chicago..
Bobby's tumor has been graded as unmethylated, which means it usually is not responsive to chemo ...although they try it anyway......The SOC, which means standard of care.... is a chemo pill called temador and 6 weeks radiation. Bobby's doctors opted for a 3 week radiation due to his age. He successfully completed his radiation and chemotherapy without side effects!!! The chemo pill will continue monthly 5 days on 23 days off...... bobby has successfully completed the 2nd round of chemo again with no side effects.
Bobby did acquire deficits as result of the brain surgery...... Left sided weakness ...as well as severalcognitive defects.... The most common cognitive defect is what they call perseverating.... Overly focusing or obsessing about things..... These have improved over time ,particularly the left side weakness.... The cognitive defects are still noticeable......
MRI of of the brain is to be done every 2 months approximately. Bobby had his 1st post surgery MRI on August 29 . The scan was stable!!! The next MRI is scheduled for the beginning of November.
The prognosis for this is poor. The general prognosis for survival is 12 to 18 months. In Bobby's age group of those over 70 ,it is generally 6 to 9 months from the dx(date of diagnosis).. he may surprise the doctors ...one never knows... The 6 to 9 months, however, is what was given to us by the oncology team.
The prognosis is poor for this disease because one can never get the entire cancer out of the brain. Although they were able to remove the entire tumor, there are still cancer cells remaining in the brain as they can never clear the margins... We were told there is a 100% chance the tumor will come back.... we do not know whether it will be 2 months, 4 months ,10 months ...there is no way to know.... There will not be a second surgery or radiation due to the extreme high risks .Bobby has chosen quality over quantity of life. Unfortunately due to Bobby's multiple comorbidities he does not qualify for any clinical trials. This has been thoroughly researched and we have consulted with the head neuro surgeon at Duke.
Bobby recently was hospitalized for pneumonia the last week of September. The pneumonia was very large but he successfully fought it and was released after 5 days in the hospital.....he is very weak and will need time to become stronger again.
A large problem with Bobby's recovery is the state of his spine ...which is very poor... We are now working with pallative care for pain control..... It is very complex balancing the correct amount of opiates and yet keep Bobby functioning. The pallative team also strongly supports marijuana.. Taking care of the pain and Bobby's spine he has been the biggest challenge. Bobby's attitude has been absolutely wonderful and we are enjoying life together very much. When the decline does begin from this disease it can often be very fast. So it is best for visitors to see him sooner than later.....