mixed and sad news.
about my friend with cancer.
Yesterday we met with Dr. Clarke at UCSF. She reviewed Heather’s MRI and the radiologist’s report. She chose her words carefully as Paulie (last day of winter break) was in the room with us. Heather’s tumor is larger. The lesions that were “lighting up” in her last MRI (November) were now larger. Swelling around the frontal lobe can be seen. This is not what we had hoped to see.
A few of the lesions, in some views, appeared to be hollow. Dr. Clarke wants to take this to the UCSF Tumor Board to get every expert’s opinion on these lesions. More on why this is important later.
The facts about Heather’s tumor and treatment received:
It’s large. It was diagnosed this way. The first doctor we saw couldn’t believe Heather hadn’t reported symptoms months if not years earlier.
It’s growing. All of our images illustrate this.
The tumor and Heather (strokes, coma, and two seizures) have not responded well to the prescribed treatments (surgery, chemo, and radiation*).
*In November, when we met with Dr. Clarke, she warned that a mixed Glioma, predominately Oligoastrocytoma has a tendency to react this way with large radiation treatments. Heather received the LARGEST dosage for the LONGEST time that is recommended for targeting the frontal lobe.
Heather’s images and her current cognitive behavior are consistent with this theory.
Worst case: This tumor is just growing - regardless of treatment.
Best case: We’re still seeing signs of a giant tumor reacting to a large dose of “I’m kicking your ass!”
So, back to the hollow lesions. Dr. Clarke believes that it is plausible that those hollow lesions are in fact, large dying cancer cells. Think of it as something being destroyed from the inside out. It’s a ripple of dying cancer. Dr. Clarke wants the tumor board to confirm or dismiss this as a theory.
Heather’s January 2 MRI was done with contrast dependent on blood oxygenation (looks at cerebral blood flow/brain metabolism/oxygenation). In those views, there are no signs of activity in the area of her lesions which supports the idea that the lesions may be dying.
What now?
Here is the plan. We met with Dr. Bobolis today and we’re reasonably sure that nothing more aggressive needs to happen (yet). We wait until Thursday evening to learn what the tumor board recommends. In the meantime, Heather starts on 4mg of Decadron (anti-inflammatory steroid) to address the swelling of her frontal lobe. By Thursday, I should notice a difference in Heather’s executive functions. She has been on a steady cognitive decline since after initially recovering from her last seizure. Lack of orientation, memory, and initiative have all been an increasing part of Heather’s daily life over the past month. We hope the Decadron brings some of her frontal lobe back. Then we wait 6 weeks and get another MRI.
It is truly my hope that we get a little more time before having to decide on Heather’s next treatment. I’m taking Heather and Paulie to our favorite beach for eleven days (Jan 24-Feb 4). I’ll divulge more about this planned adventure in a future post not too far in the future.
Mid-February will offer us more information about yet another twist in this journey. These clouds may pass. Keep shining the light.
Yesterday we met with Dr. Clarke at UCSF. She reviewed Heather’s MRI and the radiologist’s report. She chose her words carefully as Paulie (last day of winter break) was in the room with us. Heather’s tumor is larger. The lesions that were “lighting up” in her last MRI (November) were now larger. Swelling around the frontal lobe can be seen. This is not what we had hoped to see.
A few of the lesions, in some views, appeared to be hollow. Dr. Clarke wants to take this to the UCSF Tumor Board to get every expert’s opinion on these lesions. More on why this is important later.
The facts about Heather’s tumor and treatment received:
It’s large. It was diagnosed this way. The first doctor we saw couldn’t believe Heather hadn’t reported symptoms months if not years earlier.
It’s growing. All of our images illustrate this.
The tumor and Heather (strokes, coma, and two seizures) have not responded well to the prescribed treatments (surgery, chemo, and radiation*).
*In November, when we met with Dr. Clarke, she warned that a mixed Glioma, predominately Oligoastrocytoma has a tendency to react this way with large radiation treatments. Heather received the LARGEST dosage for the LONGEST time that is recommended for targeting the frontal lobe.
Heather’s images and her current cognitive behavior are consistent with this theory.
Worst case: This tumor is just growing - regardless of treatment.
Best case: We’re still seeing signs of a giant tumor reacting to a large dose of “I’m kicking your ass!”
So, back to the hollow lesions. Dr. Clarke believes that it is plausible that those hollow lesions are in fact, large dying cancer cells. Think of it as something being destroyed from the inside out. It’s a ripple of dying cancer. Dr. Clarke wants the tumor board to confirm or dismiss this as a theory.
Heather’s January 2 MRI was done with contrast dependent on blood oxygenation (looks at cerebral blood flow/brain metabolism/oxygenation). In those views, there are no signs of activity in the area of her lesions which supports the idea that the lesions may be dying.
What now?
Here is the plan. We met with Dr. Bobolis today and we’re reasonably sure that nothing more aggressive needs to happen (yet). We wait until Thursday evening to learn what the tumor board recommends. In the meantime, Heather starts on 4mg of Decadron (anti-inflammatory steroid) to address the swelling of her frontal lobe. By Thursday, I should notice a difference in Heather’s executive functions. She has been on a steady cognitive decline since after initially recovering from her last seizure. Lack of orientation, memory, and initiative have all been an increasing part of Heather’s daily life over the past month. We hope the Decadron brings some of her frontal lobe back. Then we wait 6 weeks and get another MRI.
It is truly my hope that we get a little more time before having to decide on Heather’s next treatment. I’m taking Heather and Paulie to our favorite beach for eleven days (Jan 24-Feb 4). I’ll divulge more about this planned adventure in a future post not too far in the future.
Mid-February will offer us more information about yet another twist in this journey. These clouds may pass. Keep shining the light.