Doxorubicin for Desmoplastic Small Round Cell Sarcoma
The “red stuff”
Cancer, chemotherapy, and other treatments are scary enough on their own, but we found that there were certain medicines or situations that stood out as particularly frightening. As with many things during this time, our understanding of their full implications came in small doses.
Some of these lessons came while we were at Interventional Radiology.
-This is the place Mat had his port put in.
-His biliary stent.
-Every time its' position needed to be checked.
IR is where minimally invasive procedures are done, such as placing a port or in Mathew’s case, all the procedures with his biliary stent and lung drains. They use imaging for these procedures, so every time Mathew had something done to his biliary stent or had the placement of it checked, he saw a close-up of his tumor.
“It’s all blown out in there, Mom,” He said one time.
We went there a lot.
In the beginning, I used to wait in the waiting room. That would change too.
I always went with Mathew for any procedure, even x-rays, scans, and anything non-invasive. Transport would take him around the back of the 5th floor to the patient and staff elevators, down to the second floor, past The Sarcoma Clinic and into IR through the back way. Then once Mathew was prepped and ready for his procedure I would go out to the waiting room.
It consisted of a wall of chairs, maybe 12 total. Basically, it was a hallway. The opposite wall had four generic floral prints. I used to sit there and in my mind, I decided the prints were in the wrong order and I would imagine changing them. I suppose it was a way my mind kept itself occupied.
One day I was sitting there and a woman came out from IR into the waiting room. She was very distraught. I gathered from what I overheard between her and one of the doctors, that her son had come in and wasn’t in very good shape.
“Has anyone had someone get that clinical trial drug?” she asked all of us.
I shook my head. For some reason dread set in my heart.
“It’s that red stuff,” she continued. “It’s coming out of his eyes, his pores, everywhere.”
It sounded so frightening to me. I couldn’t imagine how her son had come to be in that position. It was like that scene in Stephen King’s “The Mist” when the woman in the grocery store says her children are home alone and won’t someone see her home? Anyone? And everyone shrinks back, not wanting to get drawn into her nightmare.
That’s how it was that day. I felt so sorry for that woman. And deep down I wondered if that would one day be me.
Later we would find out one of the chemotherapy drugs Mathew received on his one-day VAC treatment for DSRCT was called “the Red Devil”, though I don’t know, have no way of knowing, or finding out if that’s what that woman was talking about. Though Doxorubicin was not a trial drug at that time.
****Doxorubicin also known as Adriamycin, is the A in VAC.
The “red stuff”
Cancer, chemotherapy, and other treatments are scary enough on their own, but we found that there were certain medicines or situations that stood out as particularly frightening. As with many things during this time, our understanding of their full implications came in small doses.
Some of these lessons came while we were at Interventional Radiology.
-This is the place Mat had his port put in.
-His biliary stent.
-Every time its' position needed to be checked.
IR is where minimally invasive procedures are done, such as placing a port or in Mathew’s case, all the procedures with his biliary stent and lung drains. They use imaging for these procedures, so every time Mathew had something done to his biliary stent or had the placement of it checked, he saw a close-up of his tumor.
“It’s all blown out in there, Mom,” He said one time.
We went there a lot.
In the beginning, I used to wait in the waiting room. That would change too.
I always went with Mathew for any procedure, even x-rays, scans, and anything non-invasive. Transport would take him around the back of the 5th floor to the patient and staff elevators, down to the second floor, past The Sarcoma Clinic and into IR through the back way. Then once Mathew was prepped and ready for his procedure I would go out to the waiting room.
It consisted of a wall of chairs, maybe 12 total. Basically, it was a hallway. The opposite wall had four generic floral prints. I used to sit there and in my mind, I decided the prints were in the wrong order and I would imagine changing them. I suppose it was a way my mind kept itself occupied.
One day I was sitting there and a woman came out from IR into the waiting room. She was very distraught. I gathered from what I overheard between her and one of the doctors, that her son had come in and wasn’t in very good shape.
“Has anyone had someone get that clinical trial drug?” she asked all of us.
I shook my head. For some reason dread set in my heart.
“It’s that red stuff,” she continued. “It’s coming out of his eyes, his pores, everywhere.”
It sounded so frightening to me. I couldn’t imagine how her son had come to be in that position. It was like that scene in Stephen King’s “The Mist” when the woman in the grocery store says her children are home alone and won’t someone see her home? Anyone? And everyone shrinks back, not wanting to get drawn into her nightmare.
That’s how it was that day. I felt so sorry for that woman. And deep down I wondered if that would one day be me.
Later we would find out one of the chemotherapy drugs Mathew received on his one-day VAC treatment for DSRCT was called “the Red Devil”, though I don’t know, have no way of knowing, or finding out if that’s what that woman was talking about. Though Doxorubicin was not a trial drug at that time.
****Doxorubicin also known as Adriamycin, is the A in VAC.
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