Starting Over Again…

Finally starting to feel somewhat “normal” again, thankfully. I’ve finally got the fever under control and I think the antibiotics are starting to work, whew… I have to say, that is one of the roughest patches I’ve gone through since I started this crazy journey almost five years ago. Beyond the obvious chemo/radiation induced sickness, the only time I can remember feeling worse is right before I was diagnosed. I remember moving into my new apartment in West Seattle and I met my new landlord for the first time… The first thing she remarked to me is that I “looked green”! The funny thing was, she was right… My skin was a nice hue of greenish gray and I definitely felt like I looked. Somehow I still managed to load up most of my stuff into the moving truck and thankfully my neighbor at the time, Roger, gave me a hand unloading. My entire lung was filled with fluid and my body was riddled with tumors throughout my lymphatic system, especially my chest. That was almost five years ago, seems longer…

Amazingly, now that I think about it, I think this instance was much much worse as far as how sick I felt. There is no way I would be able to move/load anything into a moving truck and subsequently unload it. In fact, there was a point there where I couldn’t even get out of bed for two weeks. It was a major task to just get up and down the stairs. I feel bad as I was able to see my family on Sunday but was still struggling quite a bit and feel like I didn’t have a chance to have any quality conversations with anybody. It was still great to see everyone and a nice surprise to see my Godfather Pat who drove down with his wife Kelly and my cousin Sean. I wasn’t aware but I guess Sean has been dealing with some health issues of his own. He’s been having GI issues but they haven’t been able to figure out exactly what it is. He mentioned he’s lost 30 pounds. Hope they’re able to figure out what ’s wrong, I’m sure it sucks being sick during your first year of college, not cool…

Before I started writing this, I was half dozing and thinking of how lucky I am. I was thinking about my buddy Tim S. who I met in New York as we shared the same doctor, the famous Dr. O. He was doing clinical trials like me and seemed like the world was his oyster, just getting a great job in the financial industry (if I remember correctly) and ready to move on from a stem cell transplant and all the B.S. treatment. He’s a young dude, probably 10-15 years younger than me, great attitude, nice guy. I just recently corresponded with him and found out he’s now in Seattle going through another transplant, this time an allergenic where you get someone else’s cells in hope that they play nice with the rest of the cells in your body. The hope is that they are able to recognize the intruding cancer cells (unlike our own flawed killer T cells which for some reason aren’t able to recognize the invaders). Anyway, I was just thinking how tough it mush be on him for one second walking around mid town Manhattan, decked out in a suit and ready to take on the world then all of the sudden having to put everything on hold while he flies all the way out to Seattle to be completely pummeled by harsh chemotherapy and having to deal with anti rejection drugs, the works. From what I understand, an allo is much harsher than an auto transplant because like I mentioned before, you’re getting someone else’s cells along with all the chemo/radiation. I’m sending out good vibes to Mr. Tim and hopefully if you’re reading this, you’re doing well with the engrafting and things are going smoothly. You won’t meet a nicer guy than Tim and he deserves to have the chance to move on with his life…

This brings me to a conundrum I’ve been facing more and more with friends I meet in our small Hodgkins community. I’ve become more active in a Facebook Page created solely for us cool refractory kids and it seems like more and more people are choosing to go the allo route as novel clinical trials have seemed to start drying up. I don’t know if it’s because a big new one (Adcetris or SGN-35 as I know it) has been FDA approved, the first Hodgkins drug I think ever invented. Maybe the other drug companies are scared to put resources into such a rare disease and compete with the new kid on the block (SGN-35). I mean, there are people for whom Adcetris doesn’t work (like myself) but the statistics are pretty good when you look at the overall aggregate. This leaves even a smaller pool of people who can’t be cured (they’re now starting to use Adcetris in front line therapy which will no doubt increase the efficacy, the best chance you have at a cure when it comes to Hodgkins or most cancers…. Anyway, it is weird that I don’t hear about many new drugs coming out for refractory Hodgkins and this is just a theory, I hope I’m wrong. The drug that I happen to be on wasn’t even developed for HL, it was actually developed to combat renal cancer and they found out that it has activity in Hodgkins (thankfully for me). Perhaps there won’t be any more R&D for Hodgkins drugs now that there are a couple out there that seem to be working for a portion of the population. I guess my hope is that they’ll continue to develop drugs like the one I’m on now (Everolimus or RAD001) and also the brand new exciting gene therapy research that is going on at Baylor University. Maybe after Adcetris, the focus is going to shift, the more I sit here and think about it, I think this is where I want to see the research go, into kindler gentler approaches that work with your body to kill cancer cells, not by bombarding them with toxins. My disease tends to like the toxins for some reason. So, maybe I take back what I said earlier as it might be naïve of me to say there aren’t any new drugs coming out when in fact the new technology seems to be way above traditional drugs and my hope is that someday they’ll be able to develop this technology into a semi cure by getting infusions every few months or so. How cool would it be to have the knowledge to participate in this type of research!

So now that I’ve managed to blabber on, I’m thinking it’s a good time to wind this up. I’m really happy to say that I’m near 75% of the way back, quite a big jump in the last couple of days. I’ve got another week of my antibiotics and hoping by then I’ll be most of the way back. Looking forward to enjoying my life again.

Thanks again for reading,

Chris