I never know whether to start a new thread or which of my threads to post updates on. I chose this thread to update because it has a positive tone to it and today I am feeling optimistic. This is going to be a long one so please bear with me.
So, it's been nearly a month since my husband had his most recent MRI at Mass General (MGH) and a few weeks since I read the report that said he has a 1.5 cm metastasis on segment 6 and a 1.6 cm suspicious but inconclusive mass in the caudate lobe. We saw his MGH oncologist on December 13th who said that they wanted to biopsy them and then ablate one or both, depending on results. My husband, ever the pragmatist, asked why don't they prophylactically ablate while they are CT-guided in there to take the 1 cm+ biopsy: what's the difference between the damage and if negligible, just do it. So, we got a call from the interventional radiologist last Wednesday who discussed the plan and he agreed to doing that for segment 6 but did not want to do anything just yet for the caudate, even biopsying it because of the risk of missing it and getting a false negative.
We were supposed to hear from MGH by the end of last week to schedule the procedure for sometime in January, but we didn't. I emailed the nurse practitioner at the end of the business day Friday and told her that we had not heard as we were promised. She sent a group email out and assured me that we would hear this week. Hmmm hmmmm. I think she is great but the rest of my husband's team has really dropped the ball in my mind and as you all might know from my other threads, I'm pretty much fed up and we've been making other plans to explore options at Memorial Sloan Kettering (MSK).
So, yesterday - after a really nice Christmas with my family in the NYC suburbs - we spent the day at MSK.
Dr. Kemeny showed my husband the pump and explained that because of the discontinuation of the model they had been using they are doing a trial for the new HAI pump. My husband nearly passed out when he saw the size of it which is a good 4 inches or so in diameter and half inch or so thick. We went over the process of the pump chemo and systemic chemo and were told that he would do this for six months IF we go ahead with this route. Because it's a trial, there are some financial plus sides, like if insurance doesn't cover it, MSK will. As many of you know, you can't have lung mets and do the pump, so she put orders in for him to have a CT-angiogram that afternoon while we were there.
We went up a few floors to Radiology and waited quite some time before he got in. Our dog was at our hotel in Westchester and the delay was making me a bit anxious. I phoned my family and my aunt asked if we wanted her to drive dinner over to the hotel. I said YES!!! PLEASE!!! (SO NICE OF HER) and asked while they went over there if they could take our dog out. He had last been out at 7 am and it was around 4 pm or so at this point. I made arrangements with the front desk to let her and her husband in. They dropped off a lovely dinner of leftovers from Christmas and a bottle of pino noir. They fed our dog and took him out. What a relief because I had no idea when we would get back!
Around 4:45 pm, with the CT-angiogram done, we saw Dr. Kemeny again. She brought in a resident oncological surgeon with her. Dr. K told us that that CT looked good (PHEW!!!!!!!!) and that she isn't sure that the liver masses are mets, even the one on segment 6 that MGH seems to think is certain to be cancer. Wow. Ok.... I like how that sounds. Much better than the "the lung nodules look like mets" news that I had braced myself for. She told us that she wants confirmation via PET scan and we spoke about us going to the Westchester campus of MSK for that late next week. Ok!
We managed to hop on a 5:15 pm express Metro North train out of there (her office is only about .6 mile from Grand Central) and were back at our hotel by 6:10 pm. At around 9:15 pm, Dr. Kemeny's office called to let us know that the PET scan has been scheduled for the morning of January 4th, next Friday. Awesome!
So very positive developments, though my husband says that the thought of placing a pump on his liver with six months of chemo and the pump remaining in for another two years is not all that appealing. We may also need to come down to Westchester every two weeks to get the pump refilled and cleansed. But apparently, Dr. Kemeny thinks that Folfiri is the appropriate systemic chemo for him and he should not have done Folfox/Xelox (same thing essentially). She also strongly felt that he should have done mop up chemo after his liver resection. I have a good feeling that she is the absolute best oncologist option in the world and I hope my husband decides to switch.
We STILL haven't heard from MGH about scheduling the biopsy/ablation, which we are going to schedule while my husband takes some time to make this huge decision. If he decides to switch, we will simply cancel the appointment.
We are very pleased with the level of attention and coordination by her office. It’s very reassuring. All in all, VERY grateful that Dr. Kemeny agreed to see us and has such a positive outlook on things. To say that the last few weeks have been an emotional and physical train wreck for my husband and I would be an understatement. But we have a very positive view of the future.
Wife 4/17 Dx age 45
1st primary T3 N2b M1a
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
Lynch no; KRAS wild
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles