Kim came home yesterday and things have been going well. She'll probably get a lumbar puncture again next week, then some more scans and then we'll see what's next. The doctor continues to be pleased and impressed with how well Kim handles the chemotherapy treatments.
Today we made chili for supper which is always good and generates lots of yummy freezer leftovers.
Sorry for the lack of updates lately, nothing really conclusive has been happening. Kim's been getting her lumbar punctures and is pretty tired from it all but otherwise mostly OK. She's had some back pain again along with some neuropathy in her arms but the doctor prescribed some low dose morphine and that combined with a hot magic bag seems to be helping.
She had a CT scan last Friday to check the progress of the DHAP and it does appear to be working to reduce the size of the tumours in her lungs to some extent. So, she is going to be admitted to the hospital tomorrow to begin her second round.
This past weekend Kim and I went to John's house for Rib-o-rama XI and it was lots of fun. Great weather and great food and I had a chance to catch up with a few people I hadn't seen in a while. We also went to Chris and John's to play Ticket to Ride with them+Rob (although Kim had a nap instead).
Kim was released today from the hospital from her first round of DHAP. It went pretty well but she's really really tired. I suspect she'll sleep the next few days. Additionally she's getting two lumbar punctures a week to put chemotherapy directly into her spine. While she was in the hospital she got another MRI so we'll probably get some results from that this week.
Kim was admitted to the hospital today so that she can begin her first round of DHAP (dexamethasone, cytarabine, cisplatin). The spinal involvement isn't totally under control yet, but after three rounds of methotrexate the doctor wanted to get back to treating the cancer in the rest of her body for a while. They will do a second round of DHAP in three weeks and then some more scans to reassess the progress of the treatment.
DHAP is more likely to cause side-effects than any chemo Kim has had so far. However she's had almost no side-effects from any of the others and we're hopeful that trend will continue.
Last weekend we had a bit of fun and went to see the final Harry Potter movie. In order to avoid crowds and busy theatres we went to the "Varsity VIP" theatre near Bay and Bloor. The VIP theatre only seats about 40 people and the chairs are extra-comfy with lots of leg room and nice side tables for holding drinks and snacks. They also have food/drink service right to your seat! Of course it's more expensive but it was definitely worth it to make sure Kim was able to enjoy the movie.
Finally, some fun little stats. This is my 500th blog post and I've been blogging since January of 2003 (over 8.5 years). I've written just over 105,000 words which seems like a lot, but is really just the length of an average-sized novel (Stephen King's colossal yarn, "The Stand" is something like 450,000 words). If you add in my travel journals you get an extra 70,000 words (which is a lot more than I expected).
Last week Kim had another MRI and lumbar puncture to assess the progress of the current treatment protocol (high dose methotrexate). The MRI showed a significant reduction in the size of the tumours in Kim's spine, but the reduction is not yet "good enough" so Kim is back in the hospital now getting a third round of the treatment. The lumbar puncture also showed a bit of lymphoma in the CSF (despite the last test being clear), so the cancer is definitely still around.
Additionally, the MRI was another full nervous system MRI and it showed a small tumour (3mm) on the occipital lobe of Kim's brain. The original full nervous system MRI showed an indeterminate shadow in that spot so I didn't mention it before. The presence of a brain tumour does not change the treatment, and in fact they may be able to zap that one with radiation too when we get to that stage.
That's about all the news I have at the moment on the cancer stuff. Otherwise we've been keeping busy. Kim went to her cousin's birthday the other week and also got a chance to visit with some former co-workers. I competed in Warrior Dash (awesome!) last weekend in Barrie with a bunch of friends and I also went to Jeff's birthday party. This weekend is Keizo's wedding celebration pool party in Waterloo which I'll be going to as well. Finally I went out and bought a BBQ to attach to the natural gas pipe sticking out of our deck! I seasoned the cast iron grill last night so we should be able to use it this weekend! I love BBQ.
Tuesday Kim was admitted to the hospital for her second round of high dose methotrexate. It all went super smoothly, no problems or complications. After 24 hours of receiving the rescue drug the doctor pronounced her safe to leave and she was released Thursday night.
The doctor also mentioned that the last lumbar puncture showed no sign of cancer in the cerebrospinal fluid anymore which they will confirm with another lumbar puncture next week. They will also do another MRI and CT to see how big the spinal tumours still are. If the tumours are small enough they'll switch to a new type of chemotherapy to target the tumours in the rest of Kim's body. The chemo is called DHAP (dexamethasone, cytarabine, cisplatin) and it is the alternative regimen the Kim might have gotten when she originally entered the clinical trial back in April. The reason for the switch to this one is that it has some ability to cross the blood-brain barrier and so it should continue to work a bit on the remaining spinal tumours.
Although the doctor was happy to see that the CSF is now clear, she cautioned us again not to get our hopes up as they do not expect to be able to get rid of the spinal tumours entirely.
This weekend Kim's at her parents' house to visit with extended family and I'm staying in Toronto to catch up on a bunch of stuff and also just to chill out for a while.
Yesterday Kim went in for another lumbar puncture and today we had an appointment with her doctor to discuss the plan going forward. The idea is for Kim to go in to the hospital every other week to receive high dose Methotrexate as an inpatient. They will also give her regular lumbar punctures to continue to infuse drugs directly into her spine as well as to monitor the levels of lymphoma floating in her cerebrospinal fluid.
If the levels of lymphoma eventually fall far enough they will do another MRI to check the size of the tumours in her spine. Assuming those have shrunk they will go back to trying to address the tumours elsewhere using a different chemotherapy protocol.
The biggest concern at the moment is the toxicity of the Methotrexate. The dose they give is large enough to be considered lethal and it is only the "rescue" drug (leucovorin), which they give 24 hours later that keeps Kim from succumbing to the effects. If complications start to arise due to the Methotrexate then they will have to stop giving that drug and come up with a new plan.
Tonight Kim was feeling pretty good so she and I went out for supper to our favourite pizza place, Pizzeria Libretto. It was great to get out and do something normal.
Today Kim had her second lumbar puncture to get some more chemotherapy injected directly at the site of the cancer in her spine. The doctor was very impressed with how Kim handled the Methotrexate and how her symptoms (leg pain) have mostly disappeared. The level of Methotrexate left in Kim's system had also fallen enough by today that she was released from hospital after the lumbar puncture. So we're all back at home now which is great!
Next Friday we'll meet with the doctor again and discuss the next step in the treatment. Likely Kim will go in again for more Methotrexate and more lumbar punctures.
The lumbar puncture procedure itself isn't too bad (not nearly as bad as a bone marrow biopsy), however it's extremely common to get splitting headaches in the days after due to a change in the pressure of your cerebrospinal fluid. Kim did get headaches from the first one but we're ready this time with Tylenol 3s in case she gets them again.
Kim seems to be tolerating the Methotrexate pretty well and the "rescue" drug has been started now to remove the Methotrexate from her system. Tomorrow she gets another lumbar puncture in order to inject some more chemotherapy drugs directly into her spinal cavity and then once the rescue drug is finished its job Kim will be released from the hospital.
Physically and mentally Kim has been doing pretty well the last couple days, she has lots of energy and is pretty upbeat. I'd say she's feeling better physically than she has in weeks. It makes the recent change of prognosis so surreal.
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.
