The first 90% of a project takes 90% of the time, the last 10% takes the other 90% of the time.
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.
Yesterday Kim had a Hickman line inserted at Toronto General in preparation for the stem cell transplant and also to use when getting her third round of R-GDP. Kim has always had bad veins and after all the sticking they've gotten over the last seven months they've only become worse. We were sad when her PICC line failed so it's great that they've put a new line in. The Hickman line is bigger (necessary for the transplant) and should be less likely to become blocked. Also a home-care nurse will again be visiting us regularly to help take care of the line.
The procedure for getting the line is a bit more intensive than the one for the PICC line, but it was still not too bad. We got Kim home by about 1pm only to find that Kim's doctor at St. Michael's had been trying to get a hold of us. The results from the spinal CT scan were in. In general it looked fine and there seems to be a non-cancer reason for Kim's intense back and leg pain. She appears to have a minor case of congenital lumbar spinal stenosis. This is a narrowing of the spinal canal that can cause compression of nerves and blood vessels leading to pain in the back and legs. It seems likely that some combination of the Neupogen, the chemo drugs, the lack of physical activity and the stress has caused the condition to assert itself a bit more strongly. Kim's always had minor back complaints but nothing serious enough to think twice about. It's interesting to know that there is a very specific cause. Once Kim recovers from the cancer she can look into treatments for the spinal stenosis, although apart from surgery it sounds like the best treatment is exercise and healthy living.
Anyway, the CT scan report went on at great lengths about the spinal stenosis, and then, right at the end, the report had a single sentence mentioning an extremely minor "asymmetry" in one of Kim's root nerves. This is why the doctor was calling us so urgently. Nerves are soft tissue and so they don't show up well on CT scans. You need to do an MRI. However the MRI machines at hospitals are notoriously overbooked. There was an opening yesterday afternoon and Kim's doctor really wanted to get a better look to rule out a tumour in the spine (which would be a very bad thing). Fortunately we were able to make it back to the hospital to catch the MRI opening and Kim was in and out before supper. The MRI machine is in the deepest part of the basement of the hospital and was kind of a freaky experience. Well, it was freaky for me at least, Kim didn't seem to mind.
In addition to the MRI, Kim's doctor will be giving her a lumbar puncture (ie. needle in the spine) on Thursday in order to collect some cerebrospinal fluid to test for cancer. The doctor will also inject a special type of chemotherapy at the same time just in case there is cancer present. In the worst case it will be treatment, otherwise it will have a prophylactic effect.
Kim's doctor at St. Michael's has been great through all of this recent craziness. She's explained things really well and has been super fast and proactive to make sure nothing gets in the way of the transplant. Unfortunately if there is cancer in Kim's spine it will probably derail the transplant as it is unlikely the high-dose chemotherapy would work in that case. However it's better to find this out before going through such a difficult procedure rather than doing it and only discovering later that the cancer isn't cured.
The bone pain from the Neupogen got quite severe for Kim on Wednesday and Thursday so Kim called up the doctor to find out what to do. Kim's normal doctor wasn't around that day, but the on-call doctor was able to fax a prescription for Tylenol 3 (with codeine) to our pharmacy and that stuff did the trick for the pain.
Yesterday Kim was supposed to get a bunch of tests done at PMH in preparation for the stem cell transplant including a dental check up, blood tests, a lung test and a heart test. However, Kim's normal doctor at St. Michael's returned from her absence and was concerned about the bone pain Kim was having. So, just as we were leaving for the tests at PMH we got a call from the doctor at St. Michael's asking Kim to come in for an exam to rule out other possible reasons for the pain. We had to quickly call up the co-ordinator nurse at PMH to figure out what to do about all the other tests. The co-ordinator nurse proceeded to call Kim's doctor at St. Michael's and they ultimately decided that Kim should still go to PMH in the morning for her blood tests and dental check-up but then go to St. Michael's in the afternoon for the exam. There is still plenty of time for the heart and lung tests so those are being rescheduled.
Anyway, everything went fine in the morning at PMH. The dentist was super friendly and helpful and the blood test was fast. The problems started when we got back to St. Michael's. The doctor gave Kim a thorough exam and concluded the pain was probably just a delayed reaction to the Neupogen, but she ordered a CT scan anyway just to be sure. She wanted to be extra-cautious in order to avoid any problems that might delay the transplant procedure.
Kim may be mildly allergic to the contrast dye they inject when they do CT scans. On one of her first CT scans she got a very very light rash. Unfortunately any reaction requires that in the future a very strict protocol be followed before the medical imaging department will do the scan. This normally involves taking steroids 13 hours in advance and Benadryl 30 minutes in advance. Unfortunately, the doctor wanted the scan done immediately so that we wouldn't delay any of the critical stuff happening next week (third round of R-GDP and insertion of the Hickman line). So the doctor called up the medical imaging department and talked with the doctor there about how to get around the standard reaction protocol. They determined that it would be acceptable for Kim's doctor to give her steroids by IV and then Kim could immediately go up for her scan and the people at medical imaging would give Kim the Benadryl by IV just before they were ready to do her scan.
This all seemed reasonable since they had done something similar when Kim needed a CT scan during her last hospital stay. So Kim got her steroids and then we went up to get the scan. They immediately sent us back to the doctor though because medical imaging is a big place and the people we talked to claimed that they were unable to give Kim the IV Benadryl (they were not aware of Kim's doctor's pre-approval for this). So we went back to the doctor (who was pretty angry about our treatment at medical imaging) and she gave Kim the IV Benadryl. Then we went back to medical imaging where we were told to wait for our turn. All good. Unfortunately a trauma case came in through the ER and Kim had to wait longer than expected for her scan. So by the time Kim's turn came for the scan it had been too long since she received the Benadryl and they had to give her more. Generally things like the trauma are the reason you try to get the medical imaging department to give you the Benadryl since they know when the scan will actually happen. Frustrating!
Anyway the scan eventually happened but on the first try the tech forgot to unlock Kim's IV properly and the line burst splashing the dye all over Kim. Sigh.
We eventually got out of there though, and after a frustrating amount of traffic we got home. But at home we found our driveway blocked because a car accident had happened literally in front of our house. There were three police cars and everything. The accident looked extremely minor but it took them forever to clear it.
The good news though is that today Kim's bone pain has mostly gone away and she hasn't had to take any of the Tylenol 3 since Friday morning. So it seems like it really was the Neupogen and not anything more sinister. We'll get the results from the scan on Monday or Tuesday likely when Kim goes in for her third round of R-GDP.