Cancer Doesn't Limit Me. Extracorporeal Photopheresis - How it works and how I'm gonna deal with it.

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I'm starting a new therapy soon, called "extracorporeal photopheresis", where they take huge amounts of my blood and expose it to UV light. It's being done to to treat my Graft Versus Host Disease, a side effect of my stem cell donor's cells being transplanted into me (caused by his immune system, which was put into me, thinking my skin, organs and body are foreign), which is why my skin is so scarred and I have slightly abnormal organ functioning.

It's shown remarkable results. Nearly every patient with Graft Versus Host Disease (GVHD), be it acute or chronic, has shown not just improvement, but complete remission of skin hardening and scarring. It has good rates of resolving other organs affected by GVHD too, and the treatment itself has minimal side effects. 

But it still sucks. 

Mainly 'cause I've had to have a catheter put into me. A plastic line, inserted into my jugular vein by tunneling through my chest, with 2 access points, or "pumps" hanging out. And that in itself has already made me miss so many things. 

An opportunity to help raise awareness about the importance and the impact of Youth Cancer on national TV, by driving a Ferrari (!) is just the tip of the iceberg. Luckily there were others to take my place, but I still missed out on being in a Ferrari Goddamnit!

The fact that I'll be stuck in hospital, 5 hours at a time, two, or three days a week for the next 4 - 6 months, forcing me to maybe miss another year of medical school (at the very least, it'll make it even harder to complete), and that I won't being allowed out in the sun for almost the entire summer due to the exposure to UV light only makes it worse. 

The fact that I missed out on attending the World Cancer Congress, where 8,000 leading researchers, doctors and health charity and organisations were going to discuss the latest developments in cancer research around the world is tormenting me. I was gonna suggest novel ways of treating cancers and get in touch with pharmaceutical companies and reps to make developing and accessing treatments more efficient (which is what I'm writing about in my book), but because of this whole thing, I can't!

But the thing that gets me most, is that, yet again, I have to start all over again.

The whole year of exercise and work put into me getting back to my old self... all poured down the drain. 

You'd think I'd be used to it now. I mean it's happened so many times, right?

But every time it happens... it feels as if I'm being worn down, and each time it happens, I'm that much closer to giving up.

Despite me having such great support, despite my doctors' assurances that I can still do some things, despite me having gone through this so many times before, I, like every other cancer patient, HATE that this thing STILL affects me SO. DAMN. MUCH.

It feels like I'll never get back to my old self.

It feels like it'll never end...

And for so many... it never does. 

But in the end, when I take a step back and think about it... I still know that I have a choice in all this. 

I still know that though this sucks... I wouldn't be getting this if they didn't think it'd help. 
And when I take that step back and look at the big picture; the fact that this treatment may just stop my steroids, my cramping and the constant itching in my skin... I realise that in truth, I should be celebrating this. 

When I look at why I'm most put down by everything cancer's done to me; that these constant treatments and these side effects are stopping me from being the old me... I get angry. 

Because though I'm sick of the effects cancer has on my life... I'm sicker of the fact that I keep making myself feel bad because of it. 

I REFUSE to lament that I'm limited to a "new normal" after cancer. Because the ill effects of cancer, they don't define me... they shouldn't make me detest myself...

The fact that I still manage to function, that I still manage to find reasons to smile despite all this, and that somehow, despite all this, I'm STILL able to learn from this should be something to PROUD of.

Too often we cancer patients, we trauma and depression victims and we who have "missed out" on our dreams are told to accept our "new normal". As if what's happened, limits us.

But though we may have had much taken away from us... we can still be us, we can still be happy, and we can still GROW despite it all. 

And I'm gonna do that.

Yeah, this, and other treatments, may physically stop me from doing things in the future.

But it won't stop me from being me. 

Indeed, when I think about it, this may just be the golden opportunity, the extra few hours in my day that'll allow me to focus on other, more important things. 

Writing my books. 
Learning more about cancer, depression and global inequity that I may help more people in the long run.
And just being happy for being me, instead of what I can do.  

I'm gonna make the most of this. And I hope this helps you make the most of yourselves too...


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This bit's for patients or medical students, or those interested in this treatment I'm going through and learning more about extracorporeal photopheresis. 

What is Extracorporeal Photopheresis? And how does it work?


Well, basically what happens is they take blood out of your body (hence "extra" - or out of, "corporeal" body) and put it through a machine that exposes the blood to UV light (hence photopheresis - "photo" being the UV light and "esis" being blood put through a machine or filter). 

They need good access to some large veins to get a lot of blood through the machine and gain maximum benefits from the therapy, which is why they usually make sure people have VasCaths or other catheters in to ensure access to veins before doing it. Though some people have good enough veins to do it without it, often, due to the sheer number of times they need to access it, they start to fail half-way through, and the tunneled (under the skin) Vascath ends up being the less painful, less intrusive option (I've been told by doctors and nurses that after the first week or so, it's really not that restrictive - which I hope turns out to be true).

The whole process works by killing off T-cells, a type of immune cell which finds things that may endanger the body and attacks them, and activates the immune system, that have been activated and are on the attack or that are abnormal.  
These cells are responsible for graft versus host disease, and it occurs because the donor's immune system (their blood stem cells produce white cells which comprise a huge part of the immune system) is slightly different to your own cells, and hence the T-cells attack your body thinking it's a foreign particle of some kind, even though it's not. 

UV light, in combination with psoralen (8-mop or methoxypsoralen), a medication which sensitizes your cells to UV light, has been shown to kill mainly activated or abnormal T cells. The ones that are attacking you or causing you problem. 

The blood from your entire body doesn't pass through the UV-light machine though. It'd be very hard to ensure it all does. 
So there must be a systemic mechanism of its working here too - the weird T-cells aren't just all killed off, the treatment has to somehow cause the stopping of the production, or else the killing off of the cells causing the graft versus host disease. 

And though it's not set in stone, or observable right now, this is how we think it works (remember, there's a disclaimer on the side of this here for a reason! Always ask your doctors if something is right for you!)

The T-cells that are "killed off" by UV light induce apoptosis, or self destruction, of the cell. And when these dying T cells reenter the body, they are taken up by macrophages and dendrites and other "antigen-presenting" or immune system stimulating cells that likely cause the other T-cells and B-Cells (CD4 and CD8 T cells), those responsible for furthering immune system responses and forming long term memory  in our immune system, to form to kill off the GVHD causing immune cells. This is likely combined with other mechanisms too. 

So that's how it works. 

How effective is it? 

In patients who have failed steroid and other immunosuppressing therapies in reducing chronic GVHD, ECP was remarkably effective. Rates of 80% - 100% cessation of skin GVHD are noted. With those with other forms of GVHD, like liver, gut and eye GVHD, high rates (70% and up) were noted in those who started it early after GVHD had set in (about half a year after it had started). However, lower rates of success in other organs were seen in those started later (1.5years median), and lung GVHD seems to have low rates of response to it in one study, though others suggest a decent rate.
These studies were done on those with severe, uncontrollable chronic GVHD, might I add, so success rates may be slightly better. 

And many of the studies done on this are rudimentary. There are different protocols with different measures of effectiveness. But the best sources for this (the ones I got my data from) are below:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766348/
http://www.ncbi.nlm.nih.gov/pubmed/25025011

So what does it involve for the patient?

Well, first off, there are many protocols around the world for this, as stated above, and so the length and time involved varies. 

In my case, I'll end up getting 25 treatments of this, usually 2 per week (so around 3 - 4 months), plus any extra time I may need to show full response. I know at MD Andrerson, one of the world's largest blood cancer centres, that they usually continue treatment for 6 months.

In most cases, it takes about 4 - 6 treatments for the effects to start showing.

Before you start, you put in the VasCath or other means of venous access. As I said above, you can avoid this, but it's not recommended. 

Each actual treatment will take about 3 - 4 hours on the machine. It is a long time, and the machine can be a little noisy, and there may be small side effects such as a mild fever, slightly lowered blood pressure or cramping, but these usually die down after the first few treatments. Blood will be taken from your VasCath and pushed through the machine, and pumped back into you simultaneously. I'll update this while I'm having it to let you know any other thigns you may feel. 

And after it, because you take a medication called psoralen, which sensitizes your body to UV light, you're required to stay out of the sun (or wear large covering clothing) and to wear sunglasses for 24 hours after each treatment (the glasses, they recommend, to do it inside) to protect you from burning and lasting eye damage. 

So if you see me wearing this - you'll know why. 

But if you don't, don't worry.

What kind of ninja would I be if you did see me?

My experiences of it - 35 treatments in!

So I've had a lot of treatments now! I'm just updating this. How has the overall treatment worked? 

Well! It's no miracle "overnight" cure - but when I started, the skin around my joints had started to stiffen up and become inelastic. This changed that, and now, I can move them freely again (if it wasn't for a few random, open wounds that just started up for some reason). My skin is still scarred, as you may have gathered if you follow the Facebook Page for this blog  but it's less scarred over my body, and it is starting to reduce in severity, slowly. 

35 treatments took around half a year for me. The first 25 - they happened weekly, with 2 a week. But then it got spaced out to fortnightly/monthly. There was an issue for the funding for me in my nation (Australia) - after 25 of the treatments, you only get 2 treatments monthly from then on. In other nations, they like to "wean you off it" and give 2 treatments fortnightly for 3 - 6 months and then go to monthly treatments, reviewing you all the while. We ended up getting it anyway, but around treatment 15 - 25 is where I noticed most of the improvements. 

There has also been a downward trend in my liver enzyme counts, possibly due to the GVHD too. The cramps (my other major GVHD symptom) haven't dissapeared since commencing - I've actually noticed they, and the other signs of GVHD (skin darkening/itching) that I could feel, seemed to "flare up" the day or two after treatment - which my doctor said often happens. So don't be alarmed (but do tell your doctors nonetheless! If it's flaring up, it could be a sign of something else entirely) if that seems to be happening to you too. But the cramps I have are happening within the nerves supplying the muscles (this happens for many GVHD patients actually - if you, or one of your patients are experiencing this - you may want to get an EMG done to see if that's the case. Treatment post this is limited though), which can take a few months to a few years to repair themselves. So it may be a while before I see any positive impacts of that too. 

According to the nurses/doctors running this (it's a newish/less documented therapy, so I know it's hard to find info regarding it) - my GVHD is MUCH less severe than other people who are on this therapy. And others who couldn't walk without a walking aid, or couldn't eat things easily (bending the arm was hard/painful to do) have been helped immencely because of it! 

Tis is just a "just in case warning" but a few months ago, I started seeing these red dots in my eye's vision (you couldn't see it if you looked at my eyes, but I could), about 3 days after an ECP treatment, just before I slept. And within a few days a "central retinal venous occlusion" had been seen, blocking blood supply to the eye, and causing my left eye to become blind.

Last week, as of June 2015, it happened in my right eye too. Luckily, for some reason, the occlusion cleared up, or wasn't as severe (I drank a lot of water this time after seeing it - that may have helped) and I've still got vision there.

The doctors aren't sure what's caused it - it can happen to anyone really, and they've ruled out all the major causes. But dehydration can sometimes cause it apparently, and the eye doctors said the ECP treatment may possibly have exacerbated that.

It's just a "just in case" warning, because they're not certain of it, it's the only cause that they can't rule out sort of thing (it hasn't been documented with ECP either this issue), but just in case - for Sam to avoid anything like this - make sure you drink LOTS of water, the night before, the morning/arvo of, and even during the treatment.

This is a blog post I did on what happened and what went on -
Part 1 )the first time it happened.           This is part 2 (last week's) 

But don't be afraid - I was likely a 1/1000 patient who that happened to, and there's only a tiny chance that ECP has actually caused it too - indeed, there's no proof. It's just a theory. But it's better to be safe than sorry, and drinking a good amount of water before and after the treatment is recommended anyway, so why not? 

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