Monday, July 2, 2018

Progression timeline of Beau Biden's Glioblastoma

Over the last week - while I have been bed-ridden because of the injuries from the accident - I completed reading the heartfelt, authentic and moving memoir by Joe Biden - Promise Me, Dad: A Year of Hope, Hardship, and Purpose

In this impactful and gripping book, Biden chronicles his son Beau Biden's journey through Glioblastoma with presidential, national, and international politics as a background.
Beau Biden is one of the few high-profile victims of Glioblastoma. I think it is awe-inspiring and praise-worthy that the Biden family have left such a public record of their very private and harrowing journey with this terminal cancer. Hopefully, more such records of patient journeys will help in finding a breakthrough for curing Glioblastoma forever in the near future.

Here is the progression timeline of Beau Biden's Glioblastoma as I have gathered from the book:
  •  From Wikipedia: In May 2010, Beau Biden was admitted to Christiana Hospital in Newark, Delaware, after complaining of a headache, numbness, and paralysis; officials stated that he had suffered a "mild stroke". Later that month, Biden was transferred to Thomas Jefferson University Hospital in Philadelphia and kept for observation for several days.
  • From WikipediaIn August 2013, Biden was admitted to the University of Texas MD Anderson Cancer Center in Houston and diagnosed with brain cancer, after experiencing what White House officials called "an episode of disorientation and weakness".[36] A lesion was removed at that time. Biden had radiation and chemotherapy treatments, and cancer remained stable.
  • From the book (Pages 28-30): August 2013: We were drawn to M.D. Anderson by the reputation of Dr. Raymond Sawaya, a neurosurgeon who was regarded as the best in the world at a procedure called awake craniotomy. The operation allowed the surgeon to remove the greatest part of a brain tumor without doing damage to speech, cognition or motor skills. The patient was actually conscious through most of the surgery, naming simple objects drawn on flash cards or in casual conversation with the anesthesiologist, while Dr. Sawaya probed the outlines of the tumor with tiny electrodes. If Beau suddenly couldn't identify a picture of an elephant or a car, felt a loss of strength, or couldn't talk at all, Sawaya knew he could not cut in that spot without doing serious damage. Beau had to be strong enough to endure hours of this very disconcerting procedure.  [....] When Dr. Sawaya got 98 percent or more of the tumor, there was a much better chance for the patient to beat the odds. Anything less made a difficult battle that much harder. [....] Dr. Sawaya was obviously pleased with how the surgery had gone. He had removed a tumor slightly larger than a golf ball, and Beau had come through without a single complication; except for the scar on the side of his head, he would be as he was before. His speech, his cognition, and his motor skills were unharmed. But the news had not all good. The Tumor was slightly diffuse, and Sawaya had not been able to get all of it. He had detected some microscopic cancer cells right against the wall of an artery, and he knew if he tried to cut them out Beau would have been left with serious and irreversible damage. Then the news got worse. Much worse. The lab results, Dr. Sawaya explained, confirmed the medical team's expectations: Beau's tumor was definitely a glioblastoma. Stage IV.
  • From the book (Pages 16-17): November 2014. Biden Family Thanksgiving Getaway in Nantucket, MA: Beau Biden was easily fatigued and increasingly shy to interact with people. He was losing feeling in his right hand and it wasn't strong enough for a good firm handshake., and he had been wrestling with a condition called aphasia. Radiation and chemotherapy had done some damage to the part of his brain that controlled the ability to name things. Beau retained all his cognitive capabilities, but he was struggling to recall proper nouns. He was working like hell to win back his strength and to reverse the aphasia. He was going to Philadephia most days for an hour of physical therapy and occupational therapy and then an hour of speech therapy, above all and beyond his regular chemo treatments. 
  • From the book (Pages 80-81): From the very beginning, way back in the late summer of 2013, Beau had opted for the most aggressive course the oncologist could chart. When Dr. W. K Alfred Yung of M.D. Anderson recommended that Beau endure triple the amount of standard chemo drug, called Temedor, while also taking part in the first field trial of an experimental drug treatment designed to boost the effect of Temedor, Beau said, "Let's do it." A few months later, when Dr. Yung suggested adding an unapproved but promising new drug to combat one of the mutations that made his tumor especially virulent, Beau said, "Let's do it." Dr. Yung cautioned that while there was evidence in animal studies that the drug worked, there were no human studies to back it up. There could also be uncomfortable side effects. "If there's a skin rash, "Beau said, "I'll just wear long sleeves and a baseball cap. All good."
  • From the book (Page 82): Beau held his own all through the summer, until August 2014, exactly a year after his diagnosis, when he had a sudden loss of strength and numbness in his right arm and right leg. He didn't complain. He didn't panic. "What's next?" He asked his oncologist. "How do we fight this?" Dr. Yung suggested a more potent drug, with likely side effects including nausea, fatigue, mouth sores, and diminished appetite. The drug would also increase his risk for infection, anemia, and even more serious blood issues. "Okay, Doc," Beau said, "let's do it."
  • From the book (Page 123): March 2015. The news [from M.D. Anderson about the new scans] could not have been worse. This was all new tumor growth. The cancer cells in Beau's brain were multiplying fast and in new places. This was the day we had been dreading from the day Dr. Sawaya removed the original tumor. [....] The doctors explained the disconcerting architecture of the new growth. There was a large mass in front of the space where Dr. Sawaya had removed the original tumor. Sawaya was prepared to go in and remove it as soon as possible. But there was also growth well beyond the original tumor, which Dr. Sawaya could not safely remove.
  • From the book (Pages 123-124): March 2015. ... could try the promising new experimental immunotherapy we had talked about a few months earlier. The medical team at M. D. Anderson had prepared Beau for the therapy a month earlier by drawing his blood and collecting some of his T cells - the white blood cells that identify and destroy malicious foreign agents in the body. The idea of this new immunotherapy was to identify the specific protein in the tumor cells that was triggering the growth and to engineer the patient's natural T cells to attack that specific protein only. The T cells would, in theory, gobble up the cancer cells and leave all the nearby healthy brain cells untouched. But it turned out they couldn't make that work. Beau's cancer cells had proven too diabolical; the doctors had been unable to identify and isolate the unique protein in Beau that was triggering the growth.
  • From the book (Pages 124-125): March 2015. ... another possible treatment. [...] Dr. Sawaya would surgically remove the cancerous nodule in front and then a few days later, another specialist at Anderson would inject a specially engineered live virus into the new tumor growth in the back. The purpose of the injection was to activate Beau's own immune system and let it attack the cancer cells. They had already had extraordinary success in a few of the twenty-five patients who had received the live virus injection. Dr. Yung also explained that they also wanted to try something else in combination - a separate immunotherapy treatment designed to hypercharge the organic attack on the tumor. Beau would be the first person to ever have this combination, and the risk was enormous. There was a possibility that Beau's immune system would overreact and start eating healthy brain cells, too. [...] The surgery would have to wait three or four weeks, the doctors explained, to allow time for the chemotherapy drugs Beau was now taking to clear his system, so he would be able to heal after another major brain surgery. The doctors decided to do the first injection of the immunotherapy - called anti-PD-1 antibody - as soon as possible. Dr. Yung wanted to do the procedure in the middle of next week, on Wednesday, March 4.
  • From the book (Pages 141-142): March 4, 2015. ... The procedure to inject Beau with the anti-PD-1 antibody pembrolizumab - or pembro, as the doctors called it - had gone well. The procedure itself was a simple one. They put in an IV in his arm, shot about 150 milligrams of pembro into his bloodstream over the next thirty minutes, and it was done.
  • From the book (Page 154): Beau came through the surgery on March 27 just fine, with no ill effects to his cognition or his motor skills. Dr. Sawaya had excised all he had hoped to, but the tumor appeared to be growing fast now, and Beau was weak. The medical team had decided to wait until the next Thursday, April 2, to do the injection of the live virus. That was still six days away. But Dr. Yung and Dr. Lang wanted to be sure Beau was strong enough to handle it. So all we could do now was wait.
  • From the book (Pages 161-162): April 12, 2015Beau had come through the injection of the live virus ten days earlier without a single complication. He was moving well. His appetite was still good. And he was mentally sharp. But the two fresh, angry scars on his scalp put us all on the edge; the entire family was dreading the coming effects of the untested experimental treatment. Dr.Yung and Dr. Lang had warned us that Beau would get much worse before he got better. Maybe much worse. They said he would likely be at his most vulnerable point in the third or fourth week when the virus and Beau's own immune system were at war with the tumor. The inflammation could be painful and debilitating. There would be no predicting how low he could get, or if he would survive the onslaught. The climb up from the physical nadir could take a long time, too, and we wouldn't know for sure until then if the treatment had been successful and Beau's tumor was gone. The next six or eight weeks would tell all.
  • From the book(Page 165): April 15, 2015 - Beau went to M. D. Anderson so Dr. Yung and Dr. Lang could assess the early results of the live virus injection, and Dr. Yung could administer the second injection of pembro. The news was potentially incredible. The scans showed inflammation, but it looked like the tumor growth had really slowed. There was clear evidence of necrosis on the edge of the tumor, which meant the virus was probably already exploding the cancer cells. Beau was in good shape, not showing any ill effects from the virus, and there was already evidence of tumor destruction.
  • From the book(Pages 165-166): April 19, 2015  - Beau was badly dehydrated and had not gotten out of bed in 3 days. So the doctors packed him off to Thomas Jefferson University Hospital in Philadelphia. This was likely the start of the first serious symptoms of the virus. Beau was still badly dehydrated when they admitted him, and his sodium levels were dangerously low. He couldn't keep his eyes open. He was barely responsive. The best he could do in response to a question was a thumbs-up, or a barely audible "Yes.". This was it now. We were in the worst of it, and unsure how long the worst would last. The effects of the virus were beginning to punish Beau. The swelling in his head was intensifying and the pain would have been excruciating, so the doctors kept him heavily sedated most of the time. 
  • From the book (Page 171): Early May 2015 - Beau held steady for ten or twelve days, and there was some evidence on the scans that the tumor might be shrinking. His appetite was still bad, so the doctors inserted a feeding tube. But in the first few days of May, he started showing a little improvement. [...] If Beau was on the upswing, we decided he should go to Walter Reed, the military facility just outside Washington, where he would be able to restart his physical, speech, and occupational therapy once he rebounded from his temporary virus-induced illness. 
  • From the book  (Page 171): Beau arrived at Walter Reed on May 5, 2015 - almost immediately the feeding tube caused an infection and he was rushed to an emergency surgery to replace the feeding tube and clean out the infection. Complications piled up for the next two weeks and brought him more suffering and more pain. [...] There was fluid buildup in the left ventricle fo his brain, and every time the doctors drained it the fluid just came back, which meant he was in pain or disoriented when he was conscious. Later he had a bout of pneumonia requiring a jolt of powerful antibiotics.
  • From the book  (Pages 178-179): On May 17, 2015, Beau got out of bed for something approaching physical therapy. He was able to stand upright, with some help from the nurses, for five minutes. [...] The next day he was strong enough to sit up in a motorized wheelchair for a spin around the nurses' station. [...] Seven weeks after the live virus injection, it looked like Beau had finally started to climb out of the dark hole. 
  • From the book (Page 187): Beau had a bad night on Wednesday, May 29th, 2019, and by the next afternoon he was barely responsive. 
  • From the book (Page 189): The End - May 30th, 2015, 7:51 PM. It Happened, I recorded in my diary. My God, My boy. My beautiful boy. 
One sentence that jumped out at me in the memoir is the following:
And we believed, like he did, that if he could just hang on long enough, science might outrun his disease.


This same sentiment was expressed in John Gunther's book 'Death Be Not Proud' about his son's fight with brain cancer back in 1946 with the sentence: if only we could stave off Death for a few weeks or months, something totally new might turn up.

Hopefully, the cure for Glioblastoma is really within reach and will be available to all patients very soon!

2 comments:

  1. I have no words other than to join my hope with yours, dear Prakash.

    ReplyDelete
  2. I too hope and pray each day, that we become one step closer to a cure and wipe this monster out with all the other cancer monsters! Hugs for all!

    ReplyDelete

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