Third Progression
Hearing that one's tumor load has increased is not easy. This is the third time, and it has hit me like a ton of bricks. My followup at Dana Farber [yea, I had to switch hospitals in order to keep my doctor] was much better than my initial visit. As V. likes to say, you made it your own. Well, she used more colorful language, but the idea remains the same.
Today was the BIG day at Dana Farber. Well, it was a big day for me. A friend said something the other day which stayed with me. She indicated that my odd and perverse sense of humor would find a home at the Dana. And I went with it. Today I decided that I would not let the Dana Farber happen to me, but instead would simply be me at the Dana Farber. What a difference that made!
Once again, I headed to the ninth floor and waited in line to be checked in. This time I said "Hi. I can't see your name tag. Ah! Jack, hi Jack." and I got a smile and even a bit of conversation.
I chatted with Heidi who took my vitals. Back to the waiting room, and since I was interested, I reinvestigated the "cafe." The three icons are actually a knife/fork, recycling, and trash. The coffee machine dispenses decaf and caffeinated coffee, and there is a third button for hot water. Today there were several types of tea bags and hot chocolate to choose from. The bowl still only held saltine-type crackers but there were too many to count easily. No knives or forks. Casual patients do not get snacks.
I was called back to see Dr. Christine on time today and she was ready. In preparation for our appointment she had results from the research group and had presented my "case" to her colleagues at their weekly round table discussion.
Two trials bubbled up, both investigating targeted therapies using different pathways. The first one requires a recent biopsy, so it is off the table. Bone mets are really hard to biopsy, are extremely painful, and have a huge failure rate. The other trial is investigating a pathway that has not generated a huge amount of buzz. But, Genetech has figured out WHO responds well. This requires a "stored" tumor onco test to test for this specific pathway. The end result is, I will do a study that used stored tumor sample to run a full onco-panel. This will allow us to know, in the future, which trials make sense. Since this panel will take about three month, I need to move forward. This trial will either be available or not when I need it.
So, I will start Xeloda. I will take it until it fails me. And then we will look at trials, knowing what pathways and mutations I actually have.
They sent me to the second floor where you have your blood drawn, and where you can talk with the pharmacy. First I chatted with the lab person, teasing her that she didn't want to talk with me, but instead just wanted to scan my bracelet. Once we broke the ice, we discussed our Christmast dinners. She is also making a ham, but with collard greens, a recipe that her grandmother taught her. For whatever reason, my insurance agreed to pay the Dana Farber for my RX. The young woman at the window and I chatted about my insurance company and why they approve or don't. As I headed home, I have at least 100 pages of papers outlining both the trial and study, a bag of drugs, and a parking receipt.
I will start Xeloda on Saturday. I have the gloves/socks, bag balm and immodium just in case.
Today was the BIG day at Dana Farber. Well, it was a big day for me. A friend said something the other day which stayed with me. She indicated that my odd and perverse sense of humor would find a home at the Dana. And I went with it. Today I decided that I would not let the Dana Farber happen to me, but instead would simply be me at the Dana Farber. What a difference that made!
Once again, I headed to the ninth floor and waited in line to be checked in. This time I said "Hi. I can't see your name tag. Ah! Jack, hi Jack." and I got a smile and even a bit of conversation.
I chatted with Heidi who took my vitals. Back to the waiting room, and since I was interested, I reinvestigated the "cafe." The three icons are actually a knife/fork, recycling, and trash. The coffee machine dispenses decaf and caffeinated coffee, and there is a third button for hot water. Today there were several types of tea bags and hot chocolate to choose from. The bowl still only held saltine-type crackers but there were too many to count easily. No knives or forks. Casual patients do not get snacks.
I was called back to see Dr. Christine on time today and she was ready. In preparation for our appointment she had results from the research group and had presented my "case" to her colleagues at their weekly round table discussion.
Two trials bubbled up, both investigating targeted therapies using different pathways. The first one requires a recent biopsy, so it is off the table. Bone mets are really hard to biopsy, are extremely painful, and have a huge failure rate. The other trial is investigating a pathway that has not generated a huge amount of buzz. But, Genetech has figured out WHO responds well. This requires a "stored" tumor onco test to test for this specific pathway. The end result is, I will do a study that used stored tumor sample to run a full onco-panel. This will allow us to know, in the future, which trials make sense. Since this panel will take about three month, I need to move forward. This trial will either be available or not when I need it.
So, I will start Xeloda. I will take it until it fails me. And then we will look at trials, knowing what pathways and mutations I actually have.
They sent me to the second floor where you have your blood drawn, and where you can talk with the pharmacy. First I chatted with the lab person, teasing her that she didn't want to talk with me, but instead just wanted to scan my bracelet. Once we broke the ice, we discussed our Christmast dinners. She is also making a ham, but with collard greens, a recipe that her grandmother taught her. For whatever reason, my insurance agreed to pay the Dana Farber for my RX. The young woman at the window and I chatted about my insurance company and why they approve or don't. As I headed home, I have at least 100 pages of papers outlining both the trial and study, a bag of drugs, and a parking receipt.
I will start Xeloda on Saturday. I have the gloves/socks, bag balm and immodium just in case.
posted by *susan* at
7:26 AM
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