Back to the drawing board.

As per my request, Dr. Manuel set up an appointment for a stem cell transplant reassessment with Dr. Christina Fraga in Halifax. We met on Wednesday, August 6th, and despite a second global search of donor registries, no 10/10 match for me has been found. Only one 9/10 match has been located. He's now 38, and as Dr. Fraga explained, especially since MF can present unique challenges in terms of a successful transplant, a 10/10 match is the gold standard by which transplant teams operate. With only one match that is less than 10/10, proceeding with transplant preparation isn't recommended. Should the donor be unavailable or unwilling to proceed when his cells are required, the recipient, with a destroyed immune system, would simply die.

More so than previously, this led me to wonder what specifically are the requirements for a stem cell donor match. As found on the London Health Sciences Centre website, the match is found in "human leukocyte antigens" (HLA), which are proteins/cells that are found on the surface of all cells other than red blood cells. They are like fingerprints that allow your immune system to recognize cells that belong in your body (and to fight cells that they believe don't). Further Googling found that four in ten patients do not find a matching donor, according to DKMS (Deutsche Knochenmarkspenderdatei/German Bone Marrow Donor Center).

Oh well, back to the old drawing board.

Comments

My province is losing its only oncologist/hematologist.

My oncologist/hematologist is leaving P.E.I., which means Prince Edward Island will be without one. I absolutely don’t blame Dr. Whitlock. He’s got a life outside of the medical world, and he’s got to do what’s right for him. I sincerely mean that with every fibre of my being. Living in P.E.I. through the week, and seeing your family in New Brunswick only on the weekend has got to take its toll. Then there’s the road travel, especially in the winter. The difficult part, so far and for me, is losing that connection a cancer patient makes with a trusted medical caregiver who — well, not to be dramatic, but it’s true — is keeping you alive. There’s a trust, a bond, and an intimacy a patient develops as the result of putting their life in someone else’s hands. Dr. Whitlock is the third specialist I’ve had since being diagnosed with a blood cancer, and now I'm on to my fourth. Though I'm sad to see Dr. Whitlock leave his scope of practice in PEI, I'm glad to say that he has co...

Your privileges have been revoked.

Freely adapted from the original "Andy Capp" strip by Reg Smythe. Last November, the province's only oncologist/hematologist left PEI. I was fortunate enough, however, to be referred to an oncologist/hematologist in New Brunswick, whom I began seeing in December. Shortly into the new year, I received, while at work, a phone call out of the blue from the Clinical Nurse Leader at the PEI Cancer Treatment Centre. I had never spoken to this person previously, but she had some news for me: Because PEI has not been able to find a replacement oncologist/hematologist, and they had no recourse but to send me to a specialist in Moncton, I and my specialist “do not have privileges" at the PEI Cancer Treatment Centre”. I will also no longer have access to the Nurse Practitioner at the Cancer Centre whom I was set up with for continued maintenance. To be clear, I will now have bloodwork and any transfusions that I require at the Queen Elizabeth Hospital in Charlotte...

A realization.

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...

JAK2 Mutant

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