My friend Jen and my sister Leasha were in town for the wedding, so we got up at 6:45 and were out the door for the drive to Stanford with all of our stuff that we needed for my wedding and the party to follow packed in the car.
It took almost exactly an hour to drive down there, and then we were shown to an exam room that would be our home base for the next four hours. Several different groups of people came in to talk to me - nurses, oncologists, a social worker, a surgeon, a nutritionist, a study coordinator for a clinical trial that was interested in hearing about me, and a physician's assistant whose job it was to walk me through the process, and then "present" my case to the Tumor Board. At one point there were 9 people crammed in a standard sized hospital exam room - me on the table with my shirt off, doctors taking turns checking me out, Jen and Leasha in chairs watching.
After a while they left and a nurse came back and told us we had an hour break while the board met to discuss the case, so we found went off in search of coffee and breakfast. When we came back, three people came back to talk to us about the board's decision and recommendation. As a basic course of treatment they recommended exactly what my other oncologist recommended - several cycles of Adriomiacyn and Cytoxin (AC), and then 10-12 rounds of taxol/taxotere (different brands of the same drug). So that is a huge relief.
The second thing is that they want to recruit me to join a study that Novartis is doing worldwide that Stanford and most of the other major research hospitals are doing on triple negative tumors. If I join I'll be the third from Stanford, out of 200 they intend to recruit worldwide. Details here.
It's a phase two study to see if this drug (that doesn't really have a name yet) helps Taxol to target and shrink triple negative tumors faster than Taxol alone. It has been used successfully and safely (relative term there, it's still poison) in other cancer studies. Typically you do AC first, and Taxol second, but there's no real therapeutic reason to do it in that order. So the study would flip that order and do Taxol first, then AC. If I join, I'll be randomized, but it's not a blind study. So I'll know if I'm getting the extra drug or not from day one. If I get the drug it may help, but won't harm. If I don't get the drug, I get the exact course of treatment that both oncologists agreed upon as the standard of care, so there's no risk to me. At the end of the Taxol phase they would measure the size my tumor(s) to compare against other study participants to see if the new drug helps. For the AC portion I would still be treated by Wexler at Alta Bates.
The only risk is the delay it would take to get me into the study itself. I have an appointment for a full body PET scan first thing in the morning, and then another one with my surgeon at 1 to take a look at my port. I'm going to try to get in to talk to Wexler too to get her opinion on the study. If she says that waiting a week wouldn't make a difference I'll do the study, but give Stanford that deadline. If she thinks I must start on Tuesday, then I'll start chemo on Tuesday at 1 as scheduled. I don't see a downside either way. Even if I end up on the control arm on the study, that's a real contribution that could impact other triple negative women down the road, and I'm happy to participate in it.
So that's that.
As soon as we were done with Stanford we drove to Kensington so Inca could do my hair, and then to Berkeley so the girls at Benefit could do my makeup, and then to the courthouse for the wedding. We had to be there by 3:45 to be guaranteed to be married that day. I rolled in at 3:43. No stress there. :)
We did the paperwork and then waited a bit for the ceremony itself, which happened around 4:30. I was so entirely absorbed in our own stuff, that I didn't know that the ban on same-sex marriages had been lifted at 3:30, so the very next couple to be married was the first same-sex couple in Oakland under the new rules. Which is awesome, and I would have stayed to see it if I had been paying attention. But I wasn't.
We ended up with 46 at dinner at Otaez and had a wonderful time seeing everyone. For an Emergency Cancer Wedding, it was the best it possibly could be and I am so happy that we chose to do it this way.
Now everybody has gone home, and I am exhausted beyond belief. Gotta be up in 8 hours 17 minutes for the PET scan, so I'm out.
It took almost exactly an hour to drive down there, and then we were shown to an exam room that would be our home base for the next four hours. Several different groups of people came in to talk to me - nurses, oncologists, a social worker, a surgeon, a nutritionist, a study coordinator for a clinical trial that was interested in hearing about me, and a physician's assistant whose job it was to walk me through the process, and then "present" my case to the Tumor Board. At one point there were 9 people crammed in a standard sized hospital exam room - me on the table with my shirt off, doctors taking turns checking me out, Jen and Leasha in chairs watching.
After a while they left and a nurse came back and told us we had an hour break while the board met to discuss the case, so we found went off in search of coffee and breakfast. When we came back, three people came back to talk to us about the board's decision and recommendation. As a basic course of treatment they recommended exactly what my other oncologist recommended - several cycles of Adriomiacyn and Cytoxin (AC), and then 10-12 rounds of taxol/taxotere (different brands of the same drug). So that is a huge relief.
The second thing is that they want to recruit me to join a study that Novartis is doing worldwide that Stanford and most of the other major research hospitals are doing on triple negative tumors. If I join I'll be the third from Stanford, out of 200 they intend to recruit worldwide. Details here.
It's a phase two study to see if this drug (that doesn't really have a name yet) helps Taxol to target and shrink triple negative tumors faster than Taxol alone. It has been used successfully and safely (relative term there, it's still poison) in other cancer studies. Typically you do AC first, and Taxol second, but there's no real therapeutic reason to do it in that order. So the study would flip that order and do Taxol first, then AC. If I join, I'll be randomized, but it's not a blind study. So I'll know if I'm getting the extra drug or not from day one. If I get the drug it may help, but won't harm. If I don't get the drug, I get the exact course of treatment that both oncologists agreed upon as the standard of care, so there's no risk to me. At the end of the Taxol phase they would measure the size my tumor(s) to compare against other study participants to see if the new drug helps. For the AC portion I would still be treated by Wexler at Alta Bates.
The only risk is the delay it would take to get me into the study itself. I have an appointment for a full body PET scan first thing in the morning, and then another one with my surgeon at 1 to take a look at my port. I'm going to try to get in to talk to Wexler too to get her opinion on the study. If she says that waiting a week wouldn't make a difference I'll do the study, but give Stanford that deadline. If she thinks I must start on Tuesday, then I'll start chemo on Tuesday at 1 as scheduled. I don't see a downside either way. Even if I end up on the control arm on the study, that's a real contribution that could impact other triple negative women down the road, and I'm happy to participate in it.
So that's that.
As soon as we were done with Stanford we drove to Kensington so Inca could do my hair, and then to Berkeley so the girls at Benefit could do my makeup, and then to the courthouse for the wedding. We had to be there by 3:45 to be guaranteed to be married that day. I rolled in at 3:43. No stress there. :)
We did the paperwork and then waited a bit for the ceremony itself, which happened around 4:30. I was so entirely absorbed in our own stuff, that I didn't know that the ban on same-sex marriages had been lifted at 3:30, so the very next couple to be married was the first same-sex couple in Oakland under the new rules. Which is awesome, and I would have stayed to see it if I had been paying attention. But I wasn't.
We ended up with 46 at dinner at Otaez and had a wonderful time seeing everyone. For an Emergency Cancer Wedding, it was the best it possibly could be and I am so happy that we chose to do it this way.
Now everybody has gone home, and I am exhausted beyond belief. Gotta be up in 8 hours 17 minutes for the PET scan, so I'm out.
First of all: Congratulations!
ReplyDeleteSecond: Good luck!
Reading, following your way through and hope that sending distance thoughts makes a (even little) difference.
-M
It does help. Thanks! :)
Delete