Nikhil Autar

Tag: cancer patient

  • Cancer Doesn’t Limit Me. What is Extracorporeal Photopheresis, and How Does It Work?

    This post is from the archives – my old blog where I go into detail a lot more – explaining an old treatment I had, called Extracorporeal photopheresis! Enjoy words from old me guys! Full details on how this fascinating treatment, and my experiences of it, are below (about halfway down!). 

    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. Here’s a great little video on how it works. 

    A very good, easy to understand video on how it works! 


    But it still sucks that I have to do this.  

    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 though I know it feels normal after a week or so, it 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, and that I won’t being allowed out in the sun for a day week this entire summer (due to exposure to UV light, manipulated in this procedure) 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 torments me.

    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, culminating in me finishing a 200km bike ride… all poured down the drain. 


    A talk I gave to open that bike ride.

    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…



    **********************************************************************************
    This bit is 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). 


    The same video as above, but it’s a really good summary, which is why I’ve linked it. 

     

    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 can start to fail half-way through, and the tunneled (under the skin) ‘Vascath’ port ends up being the less painful, less intrusive option.).

    (by the way – while you’re reading this, be sure to subscribe to my email list if you wanna keep hearing about my journey and other cool stuff in medicine!).

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    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, an autoimmune process that’s often felt by bone marrow transplant patients. It occurs because the donor’s bone marrow stem cells (bone marrow contains haematopoeic (blood) stem cells, which produce white cells, which are a huge part of your immune system) is slightly different to your own cells. Even though you are tissue matched to your donor, there will always be slight differences between you and someone else, 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, fits this bill.
    You’re essentially given the medication, and then a procedure where blood is collected from one arm and put back into another (or through the port), with your immune cells separated out. These immune cells are exposed to UV light (inside these very expensive, specialised machines) and then injected into your body.

    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 – a way for the 10% of your blood that is passed through the machine, to cause an effect on the rest of your immune cells.

    The activated or 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 immune 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 your good immune cells to recognise the bad ones as foreign. This causes an immune response when self-reactive T cells are produced, and continues to get better over time as your body forms immunological memory cells which stop graft-versus-host-disease cells from coming back. This is combined with other likely factors in play as well. 

    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 (nurses say 2 – 3 months usually) 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. 

    This is actually what I wear into treatments.
    All a bit of fun. Be sure to follow me on Instagram! @nikhilautar 

    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? 

  • Cancer Patient Plays Well, and Wins Big For Charity.

    Last post:                                     My Story:                                         Next One
    Recently, I was given some pretty bad news. I’ve got bronchiolitis obliterans, a lung manifesation of the graft versus host disease that plagues me after my bone marrow transplant. Essentially, it’s my donor’s immune system (in bone marrow transplants, you inherit the blood making cells of your donor, which includes their white blood cells) attacking me. This time though, in the lungs. Over time, it’s something I’ll have to watch very carefully, as the survival outcomes for this aren’t that great, and it’s something that progresses too.As you’d expect with anything of this nature, I was scared. Anxious, without even knowing it. Exams were going on too when I got the news, so I didn’t even get time to properly take it in, yet alone look it up. When I did, I realised how bad it could very well get for me. And I got even more scared.A range of emotions go through you when you hear bad news. You’d think I’d be good at dealing with these things now, given how I’d dealt with my cancer, and then my relapse and then a third cancer, and everything else (and there have been a lot of other things too) on the way. But though that attitude I took on board after all those things does help in the long run, it’s almost impossible to make some good come out of this when it just hits you. Experience isn’t exactly much help with these things. 

    But as these things happen time and time again for me, what seems to hit, and stay with me most, and longest, is a sense of finality. 

    Dealing with the leukaemia was the easy part, I feel often when I look back. The chronic effects of this all, combined with the frustration and grief (loss is loss; grief needn’t be associated with death) it brings about, makes me prone to feeling this way. 

    So I had this crazy notion a few weeks ago. What if this was the thing that brings me down? What if one of my hundreds of other conditions caused something like this too? Who knows how long I had left? 

    So why not live out my dreams?

    For those who don’t know, I play poker. I started about a year and a half ago, when the cramps I get, that nowadays leave me debilitated and in pain most nights, started progressing. I needed something to do. Something to get my mind off things. So I started playing this game I learned years ago, something I’d played just for fun and in passing, at our local club. I was gonna cramp sitting at home anyway. Why not play poker while I got them? 

    And slowly, but surely, I got better at it. I started playing buy-in, tournament events (I’d played for free for the better part of a year,  and win some money in the process). Nothing huge. In fact, til just a few weeks ago, the highest buy-in I’d posted was a $25 one. Most games I played were either free, or under $15. And til just a few weeks ago, I’d won over $6000, from less than $1200 in buy-ins! $2050 of that went to charity – as a reader of the blog had insisted on donating something to me, and that it be used for ME to have fun. That act stays with me til this day. The reason she wanted me to spend it on me just hit the nail on the head in terms what I was feeling at the time. But I couldn’t just take someone’s money in good faith. So I decided to donate all the winnings from her donation to charity instead! You can follow that journey here! 

    So, where was I? Ah, right. My dream. Well, for a while now was to go and play in the World Series of Poker’s Main Event. A HUGE poker tournament with over 6000 entrants every year, a first prize of over $7,000,000 (and a prize pool of over $60,000,000), but most importantly, one that attracts the world’s best poker players!


    I knew I was gonna play it at some point in my life. But after hearing the bad news a few weeks ago, I desperately wanted to do it this year. Even after the inital fear and that feeling of doom dropped away, I knew that life could turn at any moment, especially in someone like me. Who knows if I’d even be healthy enough to play the gruelling, 7 day tournament next year??


    Yet I was still afraid. The buy in for this was $10,000! I’d be playing some of the best players in the world! People who played this for a living! I knew I was good. But was I that good? What would my parents, what would everyone around me think? Was it really worth spending a good chunk of my savings on this??? 


    In the end though… this happened. 

     
    Yep. I did it. I booked the next flight out, for me and my brother, and the next day, we were there. 
    And the result?
    This. 
     
    I did it. I’d studied my butt off (because contrary to most peoples’ perceptions, poker is a game of incredibly complex strategy, math and risk stratification), read all my stuff and played the most focused, quality poker I’ve ever played, for 10 hours a day, for just under 40 hours and not only made a healthy profit, but beat out thousands of poker professionals (including some of my heroes – who I got to play against too!) to get there!
    It was the best couple of weeks I had in my life! All because I made this decision on a whim. 
    I think Jim Carey encapsulates every lesson you could take away from this in one minute.

     

     

    \
    So. What am I gonna do with the winnings? 

    Well, it’s not a $28,000 profit. Remember, $10,000 was used to buy me in. 

    But that’s still HUGE for me! 

    10% of the money goes to my brother. He’s long been suffering alongside me. Indeed, more than me, I’d say. It’s not easy going through cancer… but I reckon it’s MUCH tougher watching someone you love have to go through something like that, while not being able to do anything. He’s suffered not just the emotional and physical burden of looking after me, but also given up much of his life, just so I may have a semblance of a normal one. I can never thank him enough for that. But I can definitely try!

    Around 10% will be going to my cousin, whose family took me in for a couple of months, and treats me as their own, til this day,  and my father, who’s turning 50 this year. 

    And 10% will be going to charity. I’m an effective altruist, and don’t just believe, but KNOW that the best way we can make a difference in our lives is to give to the organisations that change the most lives per dollar spent. A great website actually does the research for you and ranks these charities for you. Which of these top charities am I giving to then? 

     


     
    A great summary of Effective Altruism – a way of giving that makes sense!

    In a way, all of them. Because, also something you may not know, recently, I started up a social enterprise – a charity that works as a business and distributes all profits to charities – called PlayWell! It’s been slow work, but as soon as I’m a little more healthy, I can dedicate more to it. And it’s well worth it. Because this thing could change the world. 

    Imagine being able to make those hundreds of thousands of hours you‘ll spend in your lifetime on entertainment achieve good. Well, on PlayWell, you can. Through many direct and indirect ways, your every action on this entertainment app will allow you to make the hours you’d be spending on Facebook, or YouTube, or Tumblr or Instagram – the things you’d be doing anyway – make money for charity! Every tiny action of yours will generate revenue for charity! All while you enjoy watching stuff from your favourite stars, supporting them, and discovering the best content on the internet! If you know an internet star/a budding one – let them know they’re invited to join now! Hopefully, it’ll be a thing – sooner, rather than later, and help charities make money in a completely different, currently untapped, way!

     

    If you know anyone who’s a budding/current online star, who wants to make more money while helping the world, tell them to sign up at www.playwel.org!

    And the rest of the money? Well… that’ll be put to letting me play Next Year too! And in bigger tournaments for the year to come! At least 10% of all my poker winnings from this day forwards will be going to charity. And I’ve proven to myself that I can play with the best of them. I’m sure now that this is an investment that will pay off. 


    While I was in America, I also visited some amazing doctors. And it’s not too bad news for me overall, and the lungs! A doctor who I get second opinions from routinely saw me in person for the first time, and said I looked much better in real life than on paper – which was great for my prognosis with this disease. The lungs are still iffy, all agree, but it’s not progressing, and indeed, may not progress in the near future, if I convince my doctors to get me on some drugs I’ve been telling them to put me on for months now... If you sense frustration there, you’re right. One of my doctors described the care I’d been receieving from my recent doctor as “neglect”… And though there’s one little issue left that may be concerning, overall, it’s still great news!

    And most importantly, I feel good! This trip has done so much for me. No matter how much I tell myself I can still do a lot – something that’s kept me going despite the frustration this disease brings – I still occasionally get brought down. Now, I’ll have at least one week that can remind me that I definitely can. Hopefully, that will help me continue to try and do as much for this world as possible.