Phase 4 has a hectic start

The bone marrow biopsy from the week before and the Foundation One genetic results came up clean. The bone marrow results we got were preliminary and the final results be come in about 10 days, but the doctor expects those to be clean as well. The Foundation One genetic profiling result showed Rachana’s leukemia marrow sample from March had a genomic alteration and was positive for a mutation called CXCR4. The doctor had warned us that this test checks for a lot of mutations and even if it find any mutations the research in not there yet to react to these findings. The good thing is it didn’t find any mutation that is a known troublemaker. So for now the results are all good and we just continue with the scheduled treatment without any changes. This is a major milestone as these reports could have put a dent in things and the doctors would have had to reevaluate and reset the current treatment plans, but all is good is we continue the now familiar journey.

Phase 4 started with 2 chemos through the IV on Monday, a chemo in the spine on Tuesday and another IV chemo on Friday. The chemo in the spine is the one that had troubled her in the past with severe back and headaches. It seems the spinal column and the brain is surrounded by Cerebrospinal Fluid (CSF) that help protect these vital organs. This fluid is very well regulated by the body and any small imbalance throws you off. So when they inject the chemo in the spinal column, they actually remove the same amount of fluid as the chemo that is being injected because any change in volume cause headaches. Also after the procedure there is a possibility of a leak at the injection site and this loss of volume causes headaches. In the past when Rachana has a bad episode after the spinal tap, they did a ‘blood patch’ procedure to inject a little blood, which effectively seals the spot and stops the leak, but that is another procedure of putting a needle in the spine which causes other pain and discomfort. The headache is typically more often when they don’t just inject chemo but also draw some spinal fluid for test. This time the doctor had told us that we should not worry as there was no need for tests at this stage. But the system was not updated properly and the physician that did the procedure drew some spinal fluid (15 ml)  for tests. Rachana was very worried that this will bring back the headaches, but thankfully that didn’t happen. She was tired enough from the 3 chemos and multiple trips to the clinic, so it was great that the headache didn’t pile on. But lesson learned, the next time we’ll ask the nurse and the physician if they are planning to draw fluids from the spine and if that is not what we expect, they can call our doctor and clear it up before the procedure.

This phase is 8 weeks long and can drag to 9-10 weeks if Rachana’s blood counts drop lower that expected thresholds at certain points, which will require some transfusions before continuing the treatment. The first 4 weeks of this phase is almost similar to the 4 weeks of Phase I where she was in the hospital at the start of her treatment. She had a pretty rough time in hospital and was completely beaten within the first week itself. This week was bad, but not as bad as the first week April.

Rachana is looking forward to mid November when this last phase and the main treatment ends. After that she will still have 2 years of ‘maintenance’ where she’ll have a monthly chemo but that should not slow her down.So here’s to the start of the last phase of her main treatment! Whoohooo!

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