My last Mito! :(

Never thought I would be sad to be saying goodbye to the chemotherapy drug I’ve been using since Dec. 2008. You might be asking yourself “why on Earth would you be upset about saying sayonara to a chemo drug??”. The answer is pretty simple; not only was the Mitoxantrone the only treatment I’ve taken for my MS that has had so few and easily tolerable side-effects, but it has really hit the ‘pause-button’ on any major disease progression (so, while I am still getting worse, it’s happening at a much slower rate than the ‘wham-bam-SCREW-YOU-man’ that I was experiencing prior to starting the Mito). I’ll recap for you poor-folk that are being subjected to my endless prattling. And I will attempt to be brief about it – point-form should do:

04/17/07 Rec’d results from my 1st MRI, was told by Dr. Dave Patry  (DP) that MS was the suspected culprit to all the wackiness that was going on (eg: vertigo, loss of sensation in my legs, difficulty standing/walking, etc.).

My mother reminds me that I cried a lot as a baby (kind-of fits…). I’m pretty sure it had nothing on the kind of crying that happened on that day. It was my worst fear become reality. I will forever be grateful to my sister who, 3 years later, chose that very day to get married, thus transforming it from a day that would live on in infamy with me to a day where we can instead celebrate her union with an awesome guy.

05/01/07 Dx confirmed after a 2nd MRI came back showing 1 new lesion. At this point, I was still able to walk, albeit only with a cane, and not too far/long. I seem to remember making it back to my friends place , just to put it in perspective, from my breakfast haunt in Calgary – a whopping 750 m, in just under ½ an hour with several breaks along the way.
07/01/07 After being everybody’s favourite patient at The Foothills Special Services Building (‘cause I’m kind-of that great…) for nearly 3 months, I was finally discharged and sent home.
12/14/07 My full-time return to work was authorized by DP. I applied for that regressive job I mentioned under my ‘Shiny Ball of Happy’ post…
01/07/08 My 2nd 1st day @ Parker MTL.
12/26/08 Was refused for a trial being conducted in Ottawa with autologous stem-cells due to my past medication history. Adding insult to injury, Dr. Mark Freidman  (MF), chief researcher/neurologist at the Ottawa hospital, told me (and I quote…) that “I  have a great MRI”, “that my disease is quite pronounced so early on”, and then (get this) told me I’d be a “perfect candidate for the trial”.

At this point, the wheelchair and I began TO grow closer and closer, leading to the worst-possible ‘catch-22’, in that while affording me greater independence, mobility, and endurance, ultimately wound up as a major contributing factor in my core, leg, and ankle-muscles atrophying.

One good thing came from my visit with MF – he strongly counseled me to (1) abandon Tysabri (the reason I was refused for the trial, not to mention that it was kinda killing people) and (2) begin the Mito treatment.

That was me being brief. Kinda brutal (my attempt at brevity, not the fact that 19-months post-dx I was growing closer and closer to being wheelchair (WC)-bound. Though, in all honesty, I suppose that kinda bites too…).
To the point – why on Earth am I upset about reaching the end of my run with a chemo drug? The answer couldn’t be simpler; I now have to choose a new DMT. Something that I ultimately need to do on my own. Doctors will answer any questions that I may have, but want the decision to be mine. Options that I’m currently researching:

Cyclophospohamide (CTX): a stronger and even more toxic antineoplastic (you should have grown accustomed to the fact that I suck-balls at using simple language to explain things, but I have at least linked in defs for all the jargon). While the Mito is administered only once every 3 months with a CBC done once every week prior as well as a cardiac scan once every 9 months, the Cyclo would be every  4 weeks  with blood tests 7 days prior-to and post infusion, as well as 14-days post-infusion.

Tysabri: the drug I dc’d for the trial that I was turned down for – has been known to have deadly affects on people who are immune compromised (the primary achievement of the chemo drugs, don’t even know if it’s a realistic option, but I’m damned-sure gonna ask). Administered once every 4 weeks, CBCs once monthly pre-infusion. Obviously, further discussions with my neuro would need to take place, but it’s on the list.

Copaxone: self administered, once daily injection. What I thought were larger guage needles than I had previously used (used w/ my first DMT, Rebif), a quick Googling has, in-fact, allowed me to determine that they are the same size. Lil’ poke. Everyday. For the rest of my life.. The prospect is certainly not enticing. Then again, none of them really are. Except…

A ‘dream’ answer – that a CCSVI treatment becomes available in Canada, where I can have the necessary follow-up/re-inflation of the balloon angioplasty(ies) as required. Keep your ears open – an announcement from the MS Society of Canada is due this month. I would love nothing more than to be one of the ‘guinea pigs’ who can provide valid, applicable empirical evidence that Dr. Zamboni’s theory is indeed fact.
A boy can dream, right?

Decisions, decisions. Which one?

I’ll figure it out. I always do…

-A.D.

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3 thoughts on “My last Mito! :(

  1. Stephanie says:

    The Liberation Treatment! Bring it to Canada!

    Is there there reviews of said options on-line? I know its not a product, but with anything, I would imagine someone has expressed an opinion. I know all snowflakes are unique, ubt perhaps someone in the community is “similar”?

    • wakingseconds says:

      Sure, there are dozens of incidental reports, but it’s not a ‘1-time shot’ and BOOM, away you go. The balloon angioplasty(ies) need a doctor’s close monitoring and re-inflation as req’d. I believe it will be here soon(ish). Canada has always taken a more cautious approach to, well, everything (case-in-point – we waded through the deepest and most severe global recession ever, relatively unscathed.). The reports filtering back vary, mostly positive. But the follow-up is just as integral as the procedure itself. So until we establish a protocol to begin conducting human trials… I’m just kind-of-sort-of going to continue getting worse (maybe. Who really knows? A devout Christian might say “God”, but in the words of Mr. Clarence Darrow – “I don’t believe in God because I don’t believe in Mother Goose”).

      If he does exist, I’d almost certainly rather spend an eternity with Lucifer trying to overthrow him for the harrowing disappointment he’s put me through. Seriously, what an arsehole!

  2. Rachel says:

    I am with Stephanie but you know that already. Is the staement they are supposed to make about CCSVI in particular? Do you know if Lapierre was one of the Neuro’s that might run the show? and I realized that MF initials could also mean M^^$#r F**&#@r
    Love you

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