I was diagnosed with myelofibrosis (MF) in 2011. I was fortunate to have been diagnosed early because I competed in many difficult ultra distance mountain bike races. I consider the early diagnosis to be ‘fortunate’ because without it, I would have pushed myself very hard in a tough race and would probably have had a stroke or heart attack.
The diagnosis came about because I picked up hepatitis during a mountain bike race, (from animal fecal matter on my water bottle). As a result, I spent a couple of days in hospital and had follow up bloods done where the physician who attended to me gave me a clean bill of health. However my house doctor noticed an anomaly in my bloods (high platelet count). Because I live in a small town, there were no specialist haematologists on hand, so a physician did a bone marrow biopsy under a mild sedative (Dormicam). This was a very unpleasant experience because I could feel the injection and I moved around a lot while she was trying to extract the bone marrow!
The results from the bone marrow biopsy came back as positive for myelofibrosis. At that time I naturally had no clue what this really meant, neither did my house doctor because he had no experience with MF. So I did what most people do, and dived into Google to get as much info as possible. That was a devastating experience. The basic consensus was that the average lifespan for an MF patient was 3 to 5 years. My wife did the same thing and she was likewise deeply troubled by what she read on Google.
My house doctor found a highly regarded haematologist in the nearest big city and I made an appointment to see him. There I learned the true facts about MF, which was a massive relief. Firstly he told me that most of the data on Google was out of date and reflected the ‘facts’ from a time when very little was known about MF. The lifespan data was skewed because in many cases there was a late diagnosis made on elderly patients. I was comforted by the info given to me but still felt very stressed and uneasy about a number of crucial issues. ‘how long will I live? Was there a cure? Should I tell my children, if yes, what should I tell them? Could I still run my business effectively? Could dietary intervention help?
Could I still compete in bike races? Were there any alternative medicine practices that could help’?
I again dived into Google, but this time filtered much of the useless data because I was now much better informed thanks to the information given to me by a specialist. I spent many hours sifting through all the information that I could scratch up. Eventually I decided that, because there was so much technical and so much misleading information, I would focus on two reliable sources only; my haematologist and the website of the MPN Research Foundation in the US (www.mpnresearchfoundation.org). I still do the same 3 years later. The MPN Research Foundation is a very valuable resource for anyone with an MPN.
As for the key questions I had to confront, I made the following decisions:
How long will I live? I don’t know, nor does anyone else know how long they will live. All of us will die, the only question is when. In that respect we are equal, MPN or not.
Is there a cure? Yes,a stem cell transplant(SCT). Is it always successful? No, but the odds are heavily stacked in your favour. What do I have to do to improve the odds of a successful SCT? Eat natural foods, avoid junk foods and sugar, exercise at least 5 days a week, lead a normal healthy life until that is no longer possible. This was my plan and I am sticking to it.
Should I tell my kids? No! My father had a debilitating condition when I was a teenager (not an MPN). I worried constantly about him and his health. He eventually could not work at all. I decided that I would not burden my kids with the knowledge that I had a serious condition, so that they could enjoy as many untroubled years as possible. I thought that they would have enough on their hands with school/university/boyfriends and girlfriends without worrying about me.
Could I still run my business effectively? Yes. Three years later, so far so good. I believe that one should be constructively engaged in value added activities for as long as humanly possible. I intend to continue running a challenging business for as long as possible. There is stress, and sometimes it is not healthy stress,. But I think that the challenges of running a business make me feel more alive and so this is net positive in the long run. However, I am starting to feel the need for more breaks/holidays.
Can I participate in bike races? Yes, but not nearly as aggressively as in the past. Each year I notice a real deterioration in performance. At this time my haemoglobin and hematocrit levels are low, so processing oxygen at high intensities is very difficult. I find this hugely frustrating but I intend training for races and participating in races for as long as I can.
Alternative medicines? I am not a great believer in alternative therapies, although I suspect that some have merit. The science around blood disease is very complex and I would rather put my life in the hands of a doctor with a deep knowledge of science than a well intentioned practitioner of alternative medicines. I have met one person who made tremendous progress with alternative cancer treatments, so I do not dismiss this option entirely.
So far I have been able to live normally. The only medication I take is Ecotrin to reduce the chance of thrombosis. My spleen is enlarged, but not to the point that I require any medication. I do get more tired than in the past, but I always push through the tiredness. I try very hard to never feel sorry for myself and to keep going with a normal outlook on life. I will not allow an acquired genetic disorder to define me. In the 3 years since being diagnosed I have seen a number of very positive advances in the available drugs and their efficacy. I believe that there are a number of viable treatment options that help keep symptoms in check and that more will appear over the next couple of years. I do not want a stem cell transplant, but, that may be the only option if the advances on the medical front do not progress faster than the progress of my MF. As regards the future, that is uncertain, but then this applies equally to all humans, MPN or no MPN.