What a mess yesterday was. But, before I get into that, I had an error in my last posting. I do have scans from 1/31, just before I was scheduled for surgery. And, I have scans from the first week of November. And, I got a scan last week. For some reason, I had forgotten about the scan on 1/31, but my wife remembered the fact that I'd had it.
Yesterday morning, I found a scan report in the patient portal as I was on my way to chemo (my wife was driving). The changes were not positive at all, and it was clear the current chemo isn't working. I sent the following to an online liposarcoma group that I am part of:
"I'm on my way to the hospital for chemo, which I'm sure will be cancelled. I have the CT report.
Three of four tumors have grown and the fourth likely only shrank because of previous radiation, not the chemo.
It sounds like 2 of the tumors are trying to invade the colon.
Lungs are still clear. I'll find out more from the doctor this morning.
Clearly gem/tax has failed. Not sure what will be next."
I got to the hospital and checked in. I told them that they probably didn't need to access my chemo port or do any blood work as I registered, and asked them to confirm this with the doc. They were able to do so. My heart sank a bit more. The doc knew the chemo wasn't working as well.
After killing some time with coffee - the time I'd normally be in the lab, it was my time to see the doc. Only, it was unusual that they didn't send the resident in right away. I really like the resident. She is smart and energetic and no-nonsense. She gets right to the point. And now, I expected, with bad news, they were making the doc come in first.
Finally, the doctor poked her head into the room. She told me there was a delay and a bit of chaos because they had accidentally compared my November CT scan to my new scan, and the report I had was invalid. They were working on a new report.
At this point, I didn't know whether to be furious or relieved. Or both. I still didn't know if the report would be better, but my big concern about comparing to an invalid report had happened and the hospital had released that report to me, with a typo clearly showing it was a comparison to the January report. And yet, that's not what it was at all. This is a terrible mistake to make, and it's even worse to release the erroneous report to the patient.
Finally, the doc made it back into the room, and we went though the report finding by finding by finding.
The biggest tumor, the one irradiated in September, shrunk some more. It appears to be dead. There are some changes to the liver where the tumor and liver are touching, but everyone agrees it's from the radiation and not a spread of the cancer. That tumor still needs to come out.
The second biggest tumor has shrunk measurably. It is adjacent to the colon and may require some resection to remove, but it's shrinking.
The next biggest tumor didn't really change size. But, the tumor density changed and the word necrotic was used to describe the tissue.
Only the 4th tumor was worrisome. It is touching the colon and it did measurably grow since the last scan.
Lastly, there are no new tumors. None at all. So, minimal growth in one tumor. Regression in most. Nothing new. In reality, that's all pretty good.
In summary, the oncologist said that my disease is at least stable, and possibly regressing. She said that the one tumor may simply need another shot or two of chemo and it will also turn around. She believes the chemo is working, although it's not a super-strong response like I had with the previous chemo.
She said that, in total, with the disease state, my health, how I'm tolerating the chemo and still training, and my lack of complications with a very tough chemo, she said she'd grade my progress as an "A". I find that a bit optimistic, to be honest. To me, progress is against the disease, and that seems to be a tie or perhaps a slight lead for me at the moment. Not a slam dunk. Not an "A".
So, she gave me the week off of chemo. Said I should let my body recover a bit. Said that 8 rounds is very aggressive and we might want to stop at 6 or 7. Said she will talk to Sloan Kettering today to get concurrence from them. She thinks we are on the road to surgery and hopes they concur. Chemo starts again next Monday, barring any disagreements from Sloan Kettering. And, perhaps my surgery will be a bit earlier than I had planned for, but if we can simply get to surgery right now, I'll be thrilled.