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When Mirjam (my wife) was diagnosed with myelofibrosis (bone marrow cancer), I wanted to know what others had experienced with the disease -- but there wasn't anybody "out there". I am posting this because it may be helpful. It is a graph (click on it to enlarge) of Mirjam's vital haemoglobin levels -- with comments on a few things that were happening at particular points in time. My numbers below represent the number of weeks after diagnosis as shown on the graph. It was a very late diagnosis. A woman's lowest normal haemoglobin level is about 12 (the top of the graph). 1: At diagnosis, Mirjam was sleeping as much as four-fifths of the time. They started her immediately with chemotherapy. But 2: the chemotherapy failed to improve the haemoglobin level for more than a couple of weeks. 5: She received her first blood transfusion -- but notice that she sank fast after this. 10: Here she was critical -- as is any haemoglobin level as low as 5. 11: Another blood transfusion -- as is the case with all the sharp peaks on the graph. At this point she started with EPO (a performance enhancement drug). I think this was good for her, but it took a while to kick in. 15: Mirjam suffered various small haemorrhages -- not a good sign. 18: Chemotherapy was abandoned, and thalidomide treatment began. From now on, she only slept half of the time. 21: They tried a new chemotherapy "punch". 23: Notice how the thalidomide kicked in. This brought months of stability. They were taking an outside chance with the thalidomide. 31: Mirjam had total memory wipe-outs, and episodes of severe pain -- very disturbing, but passing. 38: There were signs of heart failure here, which continued. 44: Whoa, what was happening here? It turned out that there were things going on apart from the haemoglobin levels. 48: The hospital clammed up: information blackout. 51: A specialist stroked her cheek and called her "our miracle girl". There were haemorrhages again. 55: Episodes of severe pain and extreme nausea. In my estimation, all the signs of leukaemic transformation. 57: A blood transfusion revived Mirjam for a few days. 58: The same as 55. Very rapid decline, and sudden death. They said that the cause of death was unknown. I think, liver failure. OBSERVATION: I need to add, for those who might be experiencing a similar situation, that Mirjam had peace of heart, and this made it ten times better than it might seem in writing. For us, it was not the "cruel" disease it may be described as.
When Mirjam (my wife) was diagnosed with myelofibrosis (bone marrow cancer), I wanted to know what others had experienced with the disease -- but there wasn't anybody "out there". I am posting this because it may be helpful. It is a graph (click on it to enlarge) of Mirjam's vital haemoglobin levels -- with comments on a few things that were happening at particular points in time. My numbers below represent the number of weeks after diagnosis as shown on the graph. It was a very late diagnosis. A woman's lowest normal haemoglobin level is about 12 (the top of the graph). 1: At diagnosis, Mirjam was sleeping as much as four-fifths of the time. They started her immediately with chemotherapy. But 2: the chemotherapy failed to improve the haemoglobin level for more than a couple of weeks. 5: She received her first blood transfusion -- but notice that she sank fast after this. 10: Here she was critical -- as is any haemoglobin level as low as 5. 11: Another blood transfusion -- as is the case with all the sharp peaks on the graph. At this point she started with EPO (a performance enhancement drug). I think this was good for her, but it took a while to kick in. 15: Mirjam suffered various small haemorrhages -- not a good sign. 18: Chemotherapy was abandoned, and thalidomide treatment began. From now on, she only slept half of the time. 21: They tried a new chemotherapy "punch". 23: Notice how the thalidomide kicked in. This brought months of stability. They were taking an outside chance with the thalidomide. 31: Mirjam had total memory wipe-outs, and episodes of severe pain -- very disturbing, but passing. 38: There were signs of heart failure here, which continued. 44: Whoa, what was happening here? It turned out that there were things going on apart from the haemoglobin levels. 48: The hospital clammed up: information blackout. 51: A specialist stroked her cheek and called her "our miracle girl". There were haemorrhages again. 55: Episodes of severe pain and extreme nausea. In my estimation, all the signs of leukaemic transformation. 57: A blood transfusion revived Mirjam for a few days. 58: The same as 55. Very rapid decline, and sudden death. They said that the cause of death was unknown. I think, liver failure. OBSERVATION: I need to add, for those who might be experiencing a similar situation, that Mirjam had peace of heart, and this made it ten times better than it might seem in writing. For us, it was not the "cruel" disease it may be described as.
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