Skip to main content

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

Popular posts from this blog

Your privileges have been revoked.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 deal with the devil.

Much as I doubt that anyone is still following this blog, I feel that it has become: a) a confessional for me, b) a record of living with MF, again, for me, and c) something that someone may stumble upon, perhaps long after I'm no longer here, while looking for information and resources for living with MF. To that latter point, I know I've searched for blogs, vlogs, and other peer resources that just don't seem to be there in any great number. The few that I have found just don't speak to me; they're perky, avoiding any meaningful exploration of the negative side of MF. But it's not the up side I need to explore, it's the dark side of it. That's where I need to commiserate, the territory that deals with the back and forth between wanting to live and wanting to give over to what seems to be the inevitable, the exhaustion of dealing with blood cancer over 14 or so years, of dealing with what I've come to think of as "the medical life". It...

Assessment.

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...