Last Thursday Kim went in to get her lumbar puncture and the doctor had the results of the MRI scan ready when she arrived. Unfortunately the MRI showed pretty conclusively that the cancer has moved into Kim's spinal fluid. They still did the lumbar puncture just to be sure and also to insert the special chemotherapy (called Methotrexate) to help treat the problem.
Last Friday we talked further with the doctor to get some more details. The lumbar puncture confirmed the findings from the MRI. CNS (central nervous system) involvement with lymphoma does not have a good prognosis. It's even worse given that Kim's lymphoma has already been shown to be resistant to chemotherapy. The stem cell transplant will no longer be done because the high-dose chemotherapy does not work to destroy the cancer in the CNS and so there is no point in doing it. The doctor says that there is no longer any real hope of curing the cancer and that treatment will now focus on keeping Kim alive and comfortable as long as possible. The amount of time is variable, but could be as short as 6 months or as long as 2 years.
I asked the doctor and did some of my own research and in cases like this most cancer centres generally stop treatment and focus completely on symptom management. However Kim's doctor at St. Michael's is willing to try to treat the cancer as long as Kim wants to pursue it. Kim was admitted to the hospital on Monday to get high-dose Methotrexate in order to attempt to get the spinal involvement under control. They do this as an inpatient procedure because it is a more complicated regimen, they have to give a "rescue" drug 24 hours later to flush the Methotrexate from her system (it doesn't break down on its own) and they have to keep her and monitor her until the drug is gone. They also did another MRI of her entire spine and brain to find out how pervasive the cancer is in her CNS (the original MRI was just of a specific area in her lower back). The second MRI suggests the cancer is in fact limited to Kim's lower spine and so it may be possible to do some radiation treatment of that area after the Methotrexate.
At this point there are no long term treatment plans for Kim as it's getting to be pretty uncharted territory. Assuming the cancer in the CNS can be brought under control (it is extremely unlikely it can be totally destroyed) the doctor said Kim could pursue another type of salvage chemotherapy called ICE (Ifosfamide, Cisplatin, and Etoposide) to try to take care of the cancer in the rest of her body. In theory if everything goes extremely well the possibility of the stem cell transplant comes back. Princess Margaret is holding on to the cells they harvested earlier in case that possibility presents itself. However the doctor said that case is extremely unlikely to the point of being almost impossible.
Kim's doctor has also said she'd help us search for clinical trials and that she's started to contact some of her colleagues for advice. However most trials for lymphoma exclude patients with CNS involvement due to the very poor prognosis.
Things are pretty rough here right now, it's hard to believe what's happening given that Kim still feels more or less OK most of the time. We're going to continue to pursue treatment for a little while at least but it's hard to know at what point to stop and focus more on enjoying the time we have left.
I've talked to a lot of people already about this whole new situation and everyone has been extremely warm and kind and supportive. I'd just like to say thank you to all those people and although it can feel like you can't do anything to help the emails and phone calls make a big difference and are very much appreciated.
And finally, to end on an uplifting note, we had an absolutely wonderful time having Patrick, Toni and their 15 month-old daughter Kiera visit with us the past week and a half. Patrick had to leave early to get back to work but Kiera and Toni stayed longer (with a brief break due to Kiera getting a fever). Anyway, it was lots of fun getting to talk to them and play with Kiera. Toni took a video of Kiera and I which I'll post here for its cuteness factor. Although there is a lot of bad stuff happening right now, it helps to have a happy baby running around.