Kareen Abdul Jabbar

Goodbye Keanu my multiple myeloma story 

I read about the famous American basketball player Kareem Abdul Jabbar. He was diagnosed in 2008 with chronic myeloid leukemia. He had sought medical advice after getting hot flushes every night. He has been in remission ever since. I have been having hot flushes for years. So when I was waving a fan over my face six months before I was diagnosed I didn’t think it was a new symptom of anything. Now I know. In March 2012 I read the story of rugby legend Jock Hobbs. In 2010 his leukemia was in a chronic form (slow progression of disease), by 2011 it was acute and he succumbed. I couldn’t understand why he wasn’t treated more aggressively during his “chronic” phase until I watched a You Tube clip by a haematologist who explained that the drugs were not effective during the chronic stage. But for those of us out here in the field, in the family of cancer patients, it all seemed too little too late.

      There were days when hearing about people like Jock made me tense and nervous. I grew tired of seeing the words: “a rare and aggressive disorder with poor prognosis” as the first line of every treatise on PCL so I went searching for a better outcome. I started to put in the words “surviving PCL” and “Can I survive PCL?” into the search engine. I was confident I was getting the right treatment. Everyone across the western world was on the same regime, chemo drugs followed by either autologous or allogeneic transplant or both. But the outlook was always grim.

      I was overwhelmingly depressed until I got on the site “Be the Match”. It was a national bone marrow donor registry in America. My sister told me about them. As soon as she found out about my disease she got in touch with them to find out about tissue typing. She joined their registry to be a potential worldwide donor. The first thing that hit my eye on their website was the chart of mortality rates. It showed like 48% of people alive after six years. I slammed my fist on the table as if I had accomplished this goal already. Perhaps I could make it through this? Another site proclaimed 20 % of people had survived 10 years after treatment with chemo drugs and a transplant. It didn’t say what diseases those people had before their transplants. But why couldn’t I be one of the 20%?

                I found another case study that cheered me up so much I bounced to the other side of the room. It was about a 54-year-old woman who achieved long-term complete remission from plasma cell leukemia after being treated with chemotherapy and autologous stem cell transplantation. Fifty-six months after the transplantation she remained in complete remission. She was written up in a study by the department of medical oncology, Yamanashi Prefectural Central Hospital, Japan. The report said:

“Taken together, although primary plasma cell leukemia is a rare hematologic malignancy with poor prognosis, (yes we know, we know) the intensive chemotherapy followed by tandem autologous peripheral blood stem cell transplantation may well improve the clinical outcome.”

      That 54-year-old woman became my idol.

      It was impossible to know what would happen. I knew that responding well to the chemo drugs initially meant that I had a good chance of responding to them again when the leukaemia returned. I was really well and that was a positive thing for going into the stem cell transplant. The biggest things against me were my chromosomal abnormalities. Generally they meant I would not do well for long. But I found a window open in the research on both. So maybe I fit into the statistics or maybe I would be the exception. I could be like the 54-year-old woman or 54 year-old African man, couldn’t I?

      Because I responded so well to the velcade, Alex asked the doctor if I could buy it after my government-subsidised nine cycles were over. (It cost $2,000 a shot). The doctor said yes, but there were other drugs they would be using as maintenance therapy including thalidomide. He also said new drugs were being developed all the time, like a liquid velcade .

      So of course I did a little more googling. Dr Comfort was right. There are lots of drugs under discussion in the fight against multiple myeloma including pomalidomide, carfilzomib, zolinza, panobinostat, obatoclax, daratumumab, SNS01-T and more. They are nearly unpronounceable but very exciting. There are so many new medicines for me to research, vocabulary to learn and trials to watch. I would keep my hands hovering over the keyboard in anticipation. More than that, it gave me a window of light from the cellar of my rare and aggressive disorder. With my poor prognosis and the expectation that I had only two years left to live, the idea that there might be a new drug that worked, or a chance that I could be one of those people who get reports written about them for doing so well, gave me something to cling on to.