JAK2 Mutant

There hasn’t been much information to share here lately, or at least it’s seemed that way.   As predicted in an earlier post , friends have begun to pass away. Leo Cheverie was 60 when he died of cancer this past October, and although it’s standard practice to heap praise upon the deceased, Leo was truly one of a kind. He was a smart, thoughtful, compassionate individual who was involved in just about any social justice cause you can think of. The posthumous accolades such as the Leo Cheverie Cultural Connector Award (PEI Arts Awards) and the Leo Cheverie Activism Award ( PEI Division of the  Canadian Union of Public Employees (CUPE) )  support this.   Leo and I would check in, whether through Messenger or by meeting for lunch, to share cancer stories and to generally commiserate. One thing we cancer people rarely let the rest of you know about is the fact that we dish about you. Yes, you. We talk about how you interact with us, how you respond (or don’t) to our cancer, whether you se

Post-assessment, I've started raising awareness about the need for Canadians aged 17 to 35 years of age to sign up for the Stem Cell Donor Registry located on the Canadian Blood Services website. Selfishly, my goal is to have a perfect donor match available when it's time for me to be the recipient. Of course, others will benefit from increasing the number of donors on the registry, but I'd be lying if I were to say that my motivation was anything but self interested. The first step in raising awareness has been to appear on CBC Radio's supper hour radio show Mainstreet to talk with host Matt Rainnie and Brandon Peacock,  Community Development Manager (Ottawa) /  Donor Relations & Collections ONN  about the registry. You can listen to the interview here . If you or someone you know is interested in signing up for the Stem Cell Donor Registry, you can do so here . It's my understanding that all that's required to register is a simple swab of your mouth. 

My assessment in Halifax for a stem cell transplant (SCT) took place this week. I meet with Dr. Christina Fraga and her team for an in depth discussion of the process, and was given the choice whether to go ahead or decline. Briefly, here's the information I was given: I am not quite "sick enough" to receive an SCT at this point. This is a balancing act because it was suggested that I should be blood transplant dependent first, but if I had a heart attack, stroke (for which having an MPN puts its carriers at risk) or other significant health event in the meantime, I'd be ineligible for a future SCT.   Secondly, as only one potential donor match was found, and it was not a "perfect match", the chances of success were hindered significantly. Also, during this appointment, the gravity of undergoing an SCT was driven home to me. HARD. As MF is especially difficult to treat via this method, there are a number of points at which an SCT can fail. This can leave the

When you have an MPN, it can be easy to get wrapped up in your own situation, losing sight of what's going on around you.  Currently, I've been focusing on this: One of the treatments available to people with MF is a stem cell transplant (SCT). Although my specialist is not a proponent of them (He says that they don't work), he has agreed to refer me to his colleagues at a blood cancer clinic in Halifax, Nova Scotia to be assessed for the procedure.  What happens during an SCT, in my understanding and in layperson's terms, is that your immune system is destroyed with chemo and radiation, you're given an infusion of donor stem cells, and then your immune system is rebuilt. The healing process takes about a year, the majority of which you're homebound. It's crucial to avoid infections, and two to three people (to keep the possibility of infections to a minimum) are designated as your caregivers. It's a long and gruelling process that affects your career, r

Almost 12 years ago, at the age of 46, I was diagnosed with a blood cancer, one of three Myeloproliferative Neoplasms (MPNs) :  P olycythemia Vera (PV) , E ssential Thrombocythemia (ET) , and  Myelofibrosis (MF) . The card I drew was PV, confirmed by blood work and the presence of a JAK2 mutation . Because there's a twist in the plot, I won't get into too much about my PV experience. The highlights, however, are as follows: As the result of a routine physical, my GP noticed that my blood counts were off. He sent me for a retest, which confirmed that something was askew. I was eventually seen at the PEI Cancer Treatment Centre by the only practicing hematologist at that time in Prince Edward Island (PEI), the small Canadian province on the east coast of Canada where I live. During our first meeting, he diagnosed PV, which of course, I'd never heard of.  As he was now in charge of my PV treatment plan, he prescribed a twice daily  oral chemo med -  hydroxyurea (hydrea or HU)

When you're diagnosed with a blood cancer, one of your first instincts is to go online and find out all you can about it. After you absorb a Coles Notes version of the mechanics of your disease, what you crave are shared personal stories detailing experiences. That was my trajectory anyway. After my diagnosis changed from one blood cancer (Polycythemia vera, aka PV) to another (Myelofibrosis, aka MF), I was surprised that I couldn't find those personal stories that I sought. Or maybe I should say that I couldn't find personal stories that I could relate to.  Joining peer groups on Facebook, I found that most of my peers there were overwhelmingly American, Christian, straight, and a breed of people who refer to themselves as 'warriors", whereas I'm Canadian, atheist, gay, and anything but a warrior. A survivor, maybe, but a warrior, no.    For sure, there is overlap and much to be shared were you to create a Venn diagram using the circles above, but the content