A Personal Update

I’d like to apologize for not posting my ASCO day 3 & 4 Update, but since I got home it has been a blur of appointments and dealing with a pesky head cold that I seemed to have caught in Chicago. So I decided I would write a personal update since I actually have something to update after a very long time.

I have been incredibly lucky for the past five years to be on a TKI (Targeted Kinase Inhibitor) that has effectively controlled my lung cancer. I can honestly say that I didn’t think it would work so well for so long, but it did and it has. Now after a number of months of careful surveillance and comparison, I have had slow but consistent progress. My cancer has finally outsmarted my drug. Without getting into too many technical details here, ALK+ patients have a number of places where we can develop resistance to our medications. I promise, that I will explain this phenomena in a later post, but suffice it to say, I needed to make a decision.

There has been a great deal of progress made in the TKIs ALK+ patients can take. They have developed second and even third generation drugs that address some of the “problems” with the first generation drugs have. Mainly, crossing the blood-brain barrier and addressing the variety or spots on the protein where we experience drug resistance. So with careful consideration and consultation with my oncologist, I have decided to enrol in a phase I/II trial at Princess Margaret. It is another reason I wanted to go to ASCO, so I could learn what the latest and greatest treatment options are for patients like myself. More on that soon!!

This week, I have had a battery of diagnostic tests, it began with a biopsy, so we could see exactly what is going on in my tumors. Although this wasn’t 100% necessary, the tissue on file so to speak is 7 years old and may not represent an accurate picture of what is going on. So for me, it was an easy decision to make and now we have a fresh sample. After that, I had an MRI of my brain, a new experience for me. It wasn’t a wholly unpleasant experience, but man is it noisy!! Clanks and bonks and at some point I felt like I was in an early 90’s Nintendo game.

Today I had my port inserted, something I wish I had done years ago! After 6 months of infusions and 5 years on a trial protocol that required frequent CTs with IV contrast, my veins aren’t what they used to be and I was tired of the anxiety of whether or not the technicians could get a vein or not. Usually it was not and I’d end up looking like a heroin addict, bruised and scabby from multiple pokes. So in it went. As I write this, I am still doped up, so I hope this all makes sense! Tomorrow I go for a bone scan and Monday I go for my screening exam and get to use my handy dandy new port for the first time. In a warped way, I am looking forward to Monday so that I can find out the results of both my latest CT and biopsy. I will also get randomized and get to start.

After being NED (no evidence of disease) for so long, it’s a bit of a mind f*ck having to go through all of this again. I wonder what my reaction to the new meds will be? What will my side effects be? One of the new and more common side effects of this drug is hypercholesterolemia, which kind of sucks, but is a small price to pay. If I do have this, I’m sure it will be controlled with more meds. What I’m really hoping is that my edema will go away! With my luck though, it probably won’t, but fingers crossed!

So it is a brave new world I’m entering and I am hopeful and excited for what the future holds. The last 5 years have been unexpectedly eventful and productive. It is strange looking back on all that I have done and accomplished, given I never thought I’d survive 5 years. Now I am looking forward to the next 5 and the 5 after that. My painkillers are kicking in so before I get completely incoherent and nonsensical, I will end here. Thanks for reading and keep your peepers peeled for my ASCO update and future posts.


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