On Thursday, June 28, we had our second appointment at DFCI. This was to meet with oncology surgeon Dr. Jiping Wang. We had high hopes, because why would Dr. Nathenson set us up with an appointment, taking time away from another busy doctor, if he didn’t think there was a decent chance that Dr. Wang would agree to operate?
Just in case, we had arguments ready for why now seemed like the best time. (Not to mention that a major part of referring us to DFCI was to find a sarcoma surgeon willing to operate. As a reminder, the gold standard treatment for LMS is surgery with clean margins. Dr. Greene couldn’t get clean margins in 2017 because of the risk to Teresa. He did a fantastic job, but he was also a general surgeon, not a sarcoma surgeon. He saved her life in that operation and we’re beyond grateful.)
But now she needs surgery again. She has failed 2 chemos and we were hoping to get an agreement on doing surgery before trying a third. Her tumor is nearly as large as it was in August. As she told Dr. Nathenson on Monday, “I’m almost back to how I was in August, except now I’m bald”.
Dr. Wang declined to operate. He said it was too risky. We were also left with the impression that even if Teresa came back and presented as an emergency case, just like last year, they still might not operate. I asked what were we supposed to do if her next chemo doesn’t work, and she ends up like she did last August, and we’re stuck in SWVA, 12 hours from either sarcoma surgeon we’ve seen. Do we look for the best general surgeon possible and hope he can do it right? (Dr. Greene retired in December.)
I asked the room (at this point, it was Wang, Nathenson, Wang’s PA, Nathenson’s Resident, and a visiting physician from China), “If this was your daughter/spouse/sister, would you make the same call?” I believe Nathenson when he said he would. Wang said yes, but looked away from me when he said Yes. 🙁
So now, we’re back in Roanoke. Teresa will start Yondelis/Trabectedin on Thursday. It’s a 24-hour infusion, given once every 21 days (same length cycle as before, but only one chemo). I know that sometimes this chemo is given inpatient. The other option is to wear the infusion bag home.
I’ve asked Dr. Musgrave what her thoughts on inpatient chemo for the first 2 cycles is. The first 2 cycles of chemo are when you are *most* likely to have a reaction. If she wears it home and has a problem in the middle of the night, we’re 30 minutes from the hospital!
I’ve also asked about getting T’s next CT scheduled before Thursday, so unlike with Dox/Olara, we’ll have a baseline scan immediately prior to starting Yondelis. And we let her know that T is concerned that this CT may also show that she needs another thoracentesis (or two) done. (Reminder: A thoracentesis is an outpatient procedure to drain fluid off of the lungs.) She is having trouble taking deep breaths again, and is easily winded. It’s either a medium-to-large pleural effusion on one or both lungs, pressure from the tumor (which feels higher up to T), or a combination thereof.
Dr. Musgrave wrote me back after business hours yesterday (Friday), and said she will take care of the scheduling on Monday.
I told T that no matter how great DFCI is supposed to be, if they are too nervous to operate, these aren’t the doctors she wants operating on her. When we saw Dr. John Kane in Buffalo, NY, he said he didn’t want to operate at the time, but “never say never”. He would operate if the tumor became obstructive or if it became a quality of life issue. T thinks it’s definitely a quality of life issue. In addition to breathing trouble, she’s having trouble sitting up again, and her back pain has returned.
If the tumor is putting pressure on her lungs, it may also qualify as an obstructive issue.
Since Yondelis is the next line chemo for T, it is likely he would want to see at least 2 cycles worth of data on Teresa trying Yondelis. So we’re going to try that. And then I am going to contact Roswell Park and see if I can send in this next CT and the one following 2 cycles (Nathenson recommends scans every 2 months instead of waiting 3), and see if he would be willing to meet with her again.
Given that this coming week has several appointments happening, I will probably wait to update again until next weekend (July 7 or 8) at the earliest.
Please let us know if you have any questions.
If you are trying to / wanting to donate specifically to Teresa, please visit http://teresa.grableronline.com/help-me/. If you use the donation/tribute options on CaringBridge (CB), you are donating to CB. They get the money, not Teresa. I know this has caused some confusion in the recent past, and since CaringBridge just did another big fundraiser where CB makes it look like you’re donating to your friend/loved one, but you really aren’t, I thought this would be a good time to post this again.