Looks like I spoke too soon. Near the end of March Kim started having a sore back and a mild fever. We kept a close eye on things and then on March 31 her fever spiked up to 39C and her doctor had her admitted as an inpatient at the hospital. Fortunately they got the fever under control almost immediately.
The doctor decided to keep Kim in the hospital over the weekend to wait for the results of some tests and just to keep an eye on her. She was doing well on the Friday evening (April 1) so I decided it would be OK for me to go the Blue Jays home opener with a bunch of people (Kim practically pushed me out the door). I had only been at supper before the game for 45 minutes when I got a call from Kim's mom asking me to return to the hospital. The doctor had come moments after I had left and told them that the tests revealed that the chemotherapy regimen (R-CHOP) was no longer being effective at fighting the cancer. The treatments were going so well and Kim was feeling pretty good so this was disappointing news to us.
When the primary treatment regimen stops working, the cancer is considered refractory. The doctor explained that we would have to switch to a different chemotherapy regimen and also do an autologous stem cell transplant if possible. There is still a good chance that the cancer will be cured, but the path has become longer and more difficult.
A lot has happened since we got the original news. Kim has remained in the hospital, but mainly for the purpose of expediting some additional tests. A CT scan confirmed the findings of the original chest X-ray and yesterday they did another bone marrow biopsy (ouch). She also got a PICC line inserted, which is like a semi-permanent IV line. It can stay in up to six months and it can be used to both give medicine and draw blood. This means she doesn't need to be stuck with needles multiple times a day anymore.
The new chemo regimen is being done as part of a phase III clinical trial comparing two different treatments for people with refractory Diffuse Large B-Cell Lymphoma. The two treatments are R-GDP (rituximab + gemcitabine/dexamethasone/cisplatin) and R-DHAP (rituximab + dexamethasone/cytarabine/cisplatin) and both are used extensively around North America as a secondary treatment after failure of the primary. R-DHAP is the old standard while R-GDP is newer, but many places (like BC) have already moved to make R-GDP the standard. The doctors consider them to be equally effective, but many prefer R-GDP because it is a bit less harsh on the patient. The primary reason for putting Kim on the trial was to get the rituximab (common to both protocols) paid for. OHIP does not normally cover rituximab for this usage but the trial picks up the tab (which is great since it's a fantastically expensive drug -- think tens of thousands of dollars).
Kim was randomly chosen to get R-GDP (the newer one) and she was given the first dose today. A week from now they give a second dose of just the gemcitabine, and then two weeks after that she repeats this process. It's expected that she will feel the side effects more with this regimen than with R-CHOP as it is higher dose and harsher. She was already feeling sick to her stomach this evening so it looks like the expectations were justified. She'll also have to take an injection each round to help boost her white blood cell count which will be made very low by the treatment.
After the R-GDP protocol is complete, Kim will be tested again. If the cancer responds well to the treatments then she will undergo an Autologous Stem Cell Transplant at Princess Margaret Hospital. This is similar to a bone marrow transplant, but it uses her own stem cells (so no chance of rejection) and it is much less invasive. It is still very serious though and would likely require an extended hospital stay (up to a month).
Finally, after the transplant, Kim will enter phase two of the study and be randomized to one of two test groups. One group continues to get maintenance rituximab treatments every two months for a year and the other group is merely observed closely (ie. they are a control group). There is some small evidence that maintenance rituximab treatments help prevent relapse, but nothing conclusive. This trial will help determine if there is any justification in such treatments.
In addition to all the information and tests and procedures, Kim was also kicked out of her fancy private room earlier in the week when a sicker patient needed it (Kim has actually been totally healthy since the fever left). Her new room was a semi-private which she shared with someone who appeared to be in the end stages of her own fight with cancer (in the bad way...she couldn't talk or move much on her own). Although it felt wrong to feel this way, it was really hard on for Kim to share that room. It was like a constant reminder of the potential future and it was hard to not let that get to you after a couple days. Again we feel bad to complain when Kim is currently in a much better state but it still shook us to the core.
Kim was moved to a new private room for her treatment and will remain there until she is discharged. If she does not have too strong a reaction to today's chemo she might even get to go home this weekend!