Soon after we came back from Australia, we confirmed that there was lymphoma activity in my spinal fluid again. I pretty much already knew because of worsening pins and needles and weakening in my left hand. A PET/CT scan also found four or five small tumors, all in muscle tissue. I was admitted to hospital on the 5th September, just 10 days after our return from Australia, and in hospital I remain.
At first my doctor just treated the spinal fluid activity with a couple of intrathecal applications of chemotherapy. He wanted to hold off on systemic chemo until any more urgent symptoms arose. A bloodshot patch in my right eye kept getting worse until there was almost all red and no white. Then the double vision started. A CT scan discovered a tumor in muscle tissue behind the eye. At the same time my blood counts plummeted. Treatment could be put off no longer.
Early October, just days after our 30th wedding anniversary on October first, I started a course of high dose cytarabine and etoposide, preceded by a dose of rituximab. My doctor had inserted a central venous catheter (CVC) with three lines to facilitate all the IV administration. The chemo was delivered over five days. During those days and the two following weeks I experienced a lot of nausea and associated unpleasantness, and my blood counts were all bottomed out. The CVC seemed to be red and angry more than it should be, and I was having a constant fever, so my doctor put me on three doses of two types of IV antibiotics a day. For 3 weeks I had almost no white blood cells and low enough hemoglobin and platelet counts that I was on transfusions of whole blood and platelets every other day.
About 10 days ago they removed the CVC (testing confirmed a staph infection), but I still had a lot of IV demands, which meant I had to have canulas in my arms. I dreaded this because my veins have become so hard to find and access. However, great work by some experienced nurses got me off to a good start. But the antibiotics are harsh, and the canulas would only last a day before the vein got red and angry. Lots more canula attempts, many fails. I watch them insert the needle, probing for a vein. When they do hit one, blood fills the little plastic section to which the needle is mounted, there is relatively little pain and I am relieved. When they can't find their target, the plastic section stays dry as they probe and seek the elusive vein and sink the needle deep into unproductive muscle. It hurts. Some nurses are too impatient, and bam, bam, bam; three painful misses in a row. The better ones are relaxed and careful and concentrate hard on finding a likely target.
Finally, by about the 20th October, my temperature came under control. Then a hint of bone marrow recovery as my white bloods and hemoglobin twitched upward. With a normal temperature and increasing blood counts, and decreasing mouth soreness (ulcers and sensitive gums), I was finally starting to feel human again. I could enjoy my food and had energy to talk and found I could even smile and joke around with the nurses once more. I really had been in a funk. None too soon the antibiotics stopped, and no more transfusions did I need. The final canula, which took a young resident doctor over one sweaty hour to insert on Wednesday night, was removed today.
Side effects aside, I have responded well to the chemo; the lump in my arm has gone and my right eye has recovered. Some pains from the tumors (in my chest and leg) have also gone. Next week I'll have another bone marrow biopsy and lumbar puncture to see how things stand, then another round of chemo (sigh).
Ultimately it is difficult to see a clear path to a stable remission, let alone cure, considering how short this past remission was. The only hope I see is
CAR-T therapy. Although Kymria, one of the two commercially available CAR-T treatments, is now technically available in Japan, very few centers have got their licence to provide it. Several Tokyo centers are supposed to be coming on line in the new year. But there will be very few openings and I believe they will preference young leukemia patients ahead of old DLBCL farts like me. Still, that's the only hope I have, because I can't keep having this bone marrow crushing chemo indefinitely, and we will have to push and fight as hard as we can to get access to the CAR-T.
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