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2 June 2015 / erikduval

A Man with a Plan

After two CT scans, an echo-cardio, a biopsy, countless blood analyses and some discussions, I am now a Man with a Plan. (No, not that kind of plan. Read on!)

For relapsed T-cell lymphoma, the basic plan boils down to get me into complete remission and then do an allogeneic stem cell transplant.

(I’ve had an autologous stem cell transplant in November. That was necessary to get my systems back up and running after a high dose of chemo. This time, the mechanism is different: I will get someone else’s stem cells and those are supposed to go chase my cancer cells.)

OK, so that clearly leaves us with two simple questions:

  1. how to get me into complete remission?
  2. where to get a stem cell donor?

For both of these questions, the plan is clear now. I will participate in a study with an experimental medicine to get into remission. This one is part of the ‘smart medicines’ that target specifically the cancer cells and should leave the rest of my body alone. (Nice side effect: less side effects, as the rest of my body is more or less left alone. So, hopefully not the nausea of last time…) It’s pretty interesting stuff actually: a class of so-called “PI3K inhibitors” interrupt the communication line within the tumor cells. That means that the message to replicate doesn’t go through. So the cell doesn’t replicate. So the tumor doesn’t grow. Which means that it eventually dies. And leaves my body. Good riddance.

For the stem cell donor, we’ll first try my sister and brother, who each have a 1/4 chance to match with me. (You may want to take care of your family bonds if you’re not so close with your siblings…) If neither works, we’ll try to find a donor in an international donor bank. Probability  to match with an arbitrary individual: 1/50.000. But, as a privileged (in so many ways) White Western Man, my chances are apparently quite good.) Still, it’s really nice if you want to donate – do go ahead and register (in Belgium or elsewhere) – but you can’t be tested for me specifically. (Nice of you if you considered that though!)

That’s the plan. There are some risks. Hey, it’s an experimental medicine. And allogeneic stem cell transplants are not without risk. But it’s good to have a plan.

And what does a man with a plan do? He executes. So, I’m writing this from my hospital room, waiting for my first dose of copanlisib… And guess what they just brought? Here we go! Start of Round 2…

14 Comments

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  1. Karine Nicolay / Jun 2 2015 11:28 am

    Hi Erik. Ik duim voor je! Nadat ik alles gelezen had onder de FAq ‘doet het pijn?’ wou ik me registreren als donor. Helaas, alleen min-veertigers toegelaten… Ik hoop mee op het voor jou allerbeste resultaat!

    • erikduval / Jun 2 2015 11:31 am

      Dank, Karine! En ook bedankt dat je je wilde registreren! Erg geapprecieerd…

  2. Stijn Kelchtermans / Jun 2 2015 11:42 am

    Good luck with The (Sophisticated) Plan, Erik! I donated to the stem cell bank last December, so who knows… And hang in there: mental toughness really helps, see http://www.sciencedirect.com/science/article/pii/S0191886903004197 (assuming that findings for rugby players are generalizable, but I’m sure they are🙂 ).

    • erikduval / Jun 2 2015 12:07 pm

      Very interesting, Stijn, the more so as I was told before by one of my earlier physicians that attitude makes no difference in survival rate. (Though it probably does affect your experience, of course.) I’d be interested in other studies on this topic…
      Anyway, for now, I will try to be committed (not so difficult when your life’s at stake), in control (a bit harder in a hospital environment) and challenging (or challenged?)
      BTW, great that you already donated. I did so many years ago when my nephew suffered from leukaemia. Never thought I might need the service myself eventually…

      • Stijn Kelchtermans / Jun 8 2015 3:17 pm

        Hi Erik,

        Attitude may not matter on average, so in that sense those earlier physicians may be correct. But ones you exclude the extremes from the distribution (if one’s outlook is very good or very bad, then the mindset *may* not matter), then at the very least it is a possibility that commitment and positive assertions have tangible effects. Bodies are weird! To illustrate the point further: http://www.ncbi.nlm.nih.gov/pubmed/23012270 (“there are both physiological and psychological benefits from maintaining positive facial expressions during stress”, somewhat weird but interesting research🙂 ).

        All the best,
        Stijn

  3. siavogel / Jun 2 2015 11:45 am

    And you never say GVD, Damn? Ik wens je alle moed die nodig is voor de 2e ronde Erik. Voor stamcellen heeft niemand iets aan mij. Ook ik mag me niet inschrijven in Nederland, te oud.

    • erikduval / Jun 2 2015 12:22 pm

      O, but I regularly say F@#$CK! Just never for a very long time. I’m kind of lucky that way: I go into “ok, so what do we do now” mode after a few seconds…
      “Te oud”😉 Vind ik grappig. Dus dan krijg ik misschien stamcellen van een of andere Jonge Blonde God… In ieder geval: gemeend dank dat je het overwoog!

  4. Doug Clow / Jun 2 2015 11:49 am

    Very best of luck!

    When you said ‘not that sort of plan’ I thought you meant the palindrome ‘A man, a plan, a canal: Panama!’, and expected the link would go to http://norvig.com/palindrome.html

    Glad you are finding it interesting stuff. It has been eye-opening to me to find out just how much we now know about cancer.

    For those in the UK, the Anthony Nolan trust manages potential stem cell donors:
    http://www.anthonynolan.org/
    If you sign up with them, they send you a tube to spit in and some forms, and then get in contact if you are a match. You have to be 18-30 to sign up.

    If you’re already UK blood donor, it’s easier to sign up to the British Bone Marrow Registry (they all coordinate and share information so it doesn’t matter which you join), and you can be 18-49 to sign up:
    http://www.nhsbt.nhs.uk/bonemarrow/
    You just let them know you want to, and they give you some forms and take an extra tube or two next time you donate blood. I did it that way, many years ago.

    Fingers crossed for a good match soon, and for a swift transition to complete remission. (Certified by your clinician in recognition of omission of the cancerous position from this academician.)

    • erikduval / Jun 2 2015 12:39 pm

      We obviously have different associations for ‘man with a plan’, Doug… Palindromes are interesting too, though😉
      And thanks for the extra info on how to donate!

  5. lrenshaw11 / Jun 2 2015 12:20 pm

    Go forth man with a great plan! Learning so much from you and your posts. Positive sentiments from Australia.

  6. Barbara (@bkieslinger) / Jun 2 2015 1:07 pm

    All the best for your plan, Erik! Let it be a successful one!

  7. josemota / Jun 3 2015 11:32 am

    I hope everything goes well with the plan. It’s good to have one in such difficult circumstances. I wish you all the best for this second round.

  8. vijayonlinediary / Jun 3 2015 6:09 pm

    Hope the plan will be a success. BTW I attended your talk on Social media and research. Loved it.

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