Saturday, September 27, 2014

The Pacman Effect

A lot of people have asked me or are trying to understand what type of treatment I am receiving for melanoma.  I should back up a bit and briefly talk about melanoma perhaps, but honestly I don't know a tonne about it, other than what Dr.s have told me or I have read in the brochures and booklets they have given me (I am banned from googling it).  Obviously it is a type of skin cancer, there are several types, and without going into all the details of the others I will just say mine started with a mole on my leg, and, I suppose... a life-long love affair with the sun. 

Feel free to check out The Melanoma Network of Canada website for more info.

Totally cliche story... had a mole on my leg, same spot all my life, last year it started to change colour and shape etc, all the stuff they warn you to have checked out, and I did not.  Long story short, I had it looked at in April, and removed, it tested positive for the deadly disease, as did surrounding lymph nodes (the little beady things that circulate our blood/fluids throughout our bodies), all resulting in a diagnosis of stage 3b Invasive Melanoma. Aggressive. Not the word you want to hear your OncologistS say. 

This is dangerous because it meant it had already spread from my skin to my internal stuff. Thankfully, CT scan showed that it had not spread to other organs - liver, lung, bone, and head being the main ones to watch out for.  I now have CT scans every three months, as, unfortunately those are the only way to check for the spread of melanoma - there is no blood test or other way to see if it is affecting other areas.

Fast forward - surgery in May removed more of the tissue surrounding the original mole site, plus a bunch of lymph nodes in the area (apparently we have extras we can afford to spare?), was on bedrest for eight weeks under the loving care of my family and friends and Mom a.k.a.The Warden, and then made the heavy decision to accept the invitation for a small clinical trial for a new-ish drug called Ipilimumab (pronounced ip-ee-LIM-u-mab - yes, I had to practice that).  This trial is North American, 50/50 chance, random draw, of receiving this drug as opposed to the current treatment for melanona: Interferon therapy. I got the Ipi - yay!  Note - there is no traditional chemotherapy for melanoma, it just does not respond.

Ipilimumab is currently the standard of treatment for stage 4 melanoma, and this trial is for lesser stages, as such my 3b qualifies. It is not a chemotherapy exactly, it is a "biological therapy." It is administered in the chemo unit at Sunnybrook, via 90-minute IV infusion.  I have a total of eight treatments, the first four are three weeks apart, and the second four are three months apart, resulting in approximately a year and a half of treatment.  I am approaching my fourth dose, and enjoying such side-effects as extreme fatigue, flu-like symptoms, irritability (the kids can testify), some tummy troubles, etc.  I feel I should not complain though, as I do not have to suffer the likes of extensive chemo side-effects, and I will be able to keep my hair. 

So this brings us to the Pacman theory: one of my nurses used an amusing analogy to explain to us what the biological therapy actually means.  She said to think of this drug as an army of "Pacmen" charging through and eating up the melanoma cells specifically.  So I spend much of my time mentally encouraging my inner Pacmen (all the while trying not to freak out at the thought of a bunch of little yellow circle men chomping at my insides LOL!), and we often verbally cheer on the Pacmen at home when I'm feeling crappy.  

This week when the girls sat by my side for my third treatment, Claire was inspired to draw this:  

I love it! Think we have the making of a cool logo for future awareness-raising!?  


  1. This is a great way to share your story, be an inspiration to whoever reads this, and to hone your writing skills. Your writing is great; you should write that book you talk about in the blog. I am very sad to hear about the second diagnosis, you will continue to beat cancer with the determination you have shown since April. Take care and all the best with the ongoing treatment. Sending lots of postitive thoughts and good vibes to you xxxx Sarah

  2. Nice job by Claire!! Apples n trees...

  3. Wow. I have been digesting this information since I got your message on Friday. As one of the strongest people I have had the pleasure to meet in my life I have no doubt you will face this latest challenge with the same determination I know and love that you posess. I will send all my healing thoughs your way. xoxo

  4. Natalie, you and the girls are an awesome team. Those cancer cells will be beaten. I'll still send you personal emails but will not expect a response as I will be keeping watch of this blog site. Love, hugs, and kisses to you all xxxooo