Inspiration/Motivation/Help

So I’m Speaking At Ted-X Sydney…

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I just found out today that I’ll be pitching at TedX Sydney for a $40,000 grant to back my lifesaving startup – Get to Sleep Easy!

It’s a competition called St George Kickstart, and TedXSydney is one of the biggest franchises of Ted out there. It’s such an amazing honour!

When I started out trying to find a solution to this invidious problem of #preventablecomplications (falls, pressure sores and pneumonia), I knew it was a big problem.
When we started talking to nursing homes and hundreds of caretakers, doctors and nurses homes, we knew our Smart Inclining Bed would save lives.
And now we have an opportunity to present in front of thousands of changemakers and to win this prestigious prize that will allow us to clinically trial our products and get it to market faster.

I’m stoked. Looking so forward to it. And excited about the further impacts we will make!

GetToSleepEasy.org to find out more about our #SmartIncliningBed and how much of an impact it could make… not just to vulnerable people’s lives, but also your sleep (and your neck when you Netflix in bed  ).

Nikhil Autar TedX Sydney

 

If you wanna have a look at my script and give me feedback in preparation for this – please check it out by clicking this link. You can leave comments and advice there, for sure! I’m looking forward to receiving any and all advice regarding this!

Also – sign up to my email list to keep updated on this, and on other things medical, funny and me!

 

Check out what we do at Get to Sleep Easy in this sweet little demo vid below!

 

 

 

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

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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!).

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? 
Humour In Hospital

Humour In Hospital 1 – Mary Johnson.

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Hospitals are boring. 

When you’re in there for months at a time, unable to see your friends, go to school or uni or work or even, at times, move for a while, it becomes agonising. 

There are ways to occupy yourself, sure. But you can’t FaceBook or YouTube all day, not for a few weeks in a row in any case. You can’t read forever. You may not always physically be able to do assignments or answer calls for work. Being stuck in a room or building for a long time is never easy. 

It’s what our prison system is based on. 

But there are moments which stand out from the blur of hospital staff, time-pass and treatment. Moments which keep it all interesting. 

And they’re almost always funny. 

Humour is really important for a lot of patients. It not only gets them away from boredom, but also cheers them up when life seems rough, especially kids. It can be powerful in doing those things. And the great thing is, it can come from literally anywhere – doctors, nurses, random occurrences in the hospital, or the patient can create it for themselves.

This series will be about some of the funniest, most memorable things that have happened to me while in hospital. 

Here’s the first one.

It started off an ordinary night. I was recovering from a dose of chemotherapy. Not many people know this, but most chemos don’t hurt or have too many immediate side effects as they’re injected into the veins. When it really begins to take effect, the week or so after that, is when it gets hard.

One the common side-effects, one I was experiencing, about 2 weeks after the chemotherapies had been infused was low blood counts. For me that night, platelets were especially low, so I was getting a bag transfused at around 6pm.

My nurse for that shift came and began making sure it was actually me the platelets were for, engaging in idle banter with my mother and I as she did so. They always check with another nurse as well to make sure that there wouldn’t be a mix-up. Once she was done, she put the bag up and let it run as usual. 

“Wait a second, you’re Mary Johnson right?” she exclaimed as she was about to leave the room. We all laughed as she walked out, attending to another patient. She was one of the funnier nurses in the ward.

I’d had at least a hundred of these transfusions before (I’m not even exaggerating), so it was all pretty much routine for me. But 15 minutes in, my lips began feeling… heavy. It seemed like they were growing bigger, minute by minute. Soon I couldn’t even close them. 

I pressed the panic button. Something was up. 

Nurses came rushing in, and soon enough, doctors were surrounding my bed. I was in anaphylactic shock – I’d had a severe reaction to the platelets. My face had swollen to twice it’s normal size, I was itchy, everywhere, and my throat was beginning to swell, slowly constricting my air ways. 

I was lucky though. The nurses were fabulous at keeping me calm in such a scary situation, and the doctors were doing their job well too. Within an hour and a few shots of hydrocortisone, anti-histamines and a hit of adrenaline, I pulled out of it fine. A few days later, I was perfectly fine. 

It wasn’t the nurse’s fault. I’d had a reaction to the preservatives in the platelets, or the antibodies in them or something else in the bag. It’s not like they weren’t matched to me. It was only fate which made her joke seem tasteless. She stayed back almost 2 hours past her shift, helping in my recovery and keeping an eye on me after it had all settled down, visibly trembling with worry. 

The next morning, when both dad and mum were in the room with me, she peeped through the door during her shift to check up on me, even though I wasn’t her patient at the time. Even though we knew it wasn’t her fault, and though she knew that we didn’t blame her, she was pale with guilt. 

“Morning, Mary Johnson,” said Dad before bursting into maniacal laughter.

The horrified look on her face, the laughter of my parents and the reluctant chuckle she broke into after a few moments will stay with me forever. 

From that moment onwards, I knew that whenever I saw her, or whenever I’d be getting another bag of platelets – even whenever I’d be administering them, I’d think back to that night. 

But I wouldn’t be thinking about the excruciating pain of adrenalin as it forced blood too rapidly through the tiny vessels in my head, or the insatiable itching all over my body or the drowning feeling as my airways were constricted by the swelling of its own tissues. 

I’d instead be thinking about the newly dubbed Mary Johnson. I’d remember the shock on her face. I’d remember my father’s laughter and my mother’s chiding look as he howled on for nearly a minute. I’d remember the looks of glee on the faces of the other nurses as we told them about her new nickname for work. 

And I’m glad that I can see it that way. 

All it took was 1 little joke.

https://www.facebook.com/musingsofamedstudentpatient <– If you or a loved one needs help or if you enjoy my blogs or if you’re interested in medicine, like this page on facebook =]

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For $20, we won’t name anything after your ex for Valentines, because you’re not a dick and we support that.

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And also because it leaves you the option to keep hittin dat 😉

Valentine’s is a hard day for some. Not only are beta males like us forced to watch on, desolately, as billions share their perfect love lives on social media, we’re also subjected to this shit.

It’s seems like every zoo, and every viral news site in the world have come together to form the ultimate clickholes of clickholes this year around. I was mildly annoyed by this, so, as is my God Given Right as a MILLENIAL – I put in hours (10 minutes) of work to stop this shit. Sign the Change.org to stop this shameless attempt to generate website hits, and be sure to click this link to watch each of these photos in slideshow mode to artificially inflate the views this page gets before this leaves your news cycle.

 

 

If you hate shameless self promotion and clickbait, be sure to check out my upcoming free e-book on how what I did to beat cancer can be used to help you with anything in life, guaranteed (and by guaranteed, I mean it may work – but I’m committed to testing the psychological, neurobiological, learning and motivation science behind this with my app – which powers and automates medical research – Centered Around You.)

If you actually wanna make a difference, donate a mosquito net, one of the most cost effective way to save lives and billions in lost revenue according to GiveWell – which I’m sure you can name after that bloodsucking #$*!# ex of yours too.

 

It was funny the first 100 times… Ok… I’ll be honest… It’s still quite funny. I’m just doing this for teh views lel.

Shameless promo: Follow me on Facebook – or on insta/twitter @nikhilautar . If you wanna help make my startup a success – www.GoFundMe.com/gettosleepeasy

Sign up to my email list.

Follow the journey of my lifesaving startup:

 

If you’re bored watch some of the stupid stuff I get up in hospital/when I’m less sick than usual.

 

Read more about me here!

 

 

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#LockEmUp. #MakeAlternativesGreatAgain. Why Is It OK for People to Fraudulently Spread BS on Health Online?

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For those who don’t know me… My name is Nikhil. I’m a medical researcher, medical student, and ex cancer patient.

I’ve been on both sides of the medical bed in my role as a patient, future doctor, and have also been in the background too – working on, and advocating for medical research. Again, in both my capacities as a professional AND a ‘consumer’ – aka – a patient.

I’ve looked up the literature, evaluated trials and fought to get the medicine which has probably kept me here (azacitidine, which was in early phase trials for my condition, when I’d relapsed, and needed it most). I’ve also been on numerous alternative therapies, from low sugar diets and alkaline water, to tumeric, Chinese herbs, and even medical marijuana. Both for cancer, and the resultant chronic, and potentially fatal illness my treatment has left me with (graft versus host disease).

I know what it’s like to be desperate. I know how crappy doctors can be when considering you as a COMPLETE patient, and person – and why and how complimentary medicine DOES make a difference. Indeed – a massage therapist, and dietician have changed my life. I’m seeing a naturopath soon too.

But I also know the importance of medical science. I also know numerous friends who’ve been turned away from options which gave them a chance, and ended up dying. And in this post, you’ll read a story of HOW I MYSELF WAS ALMOST CONNED into trying Sodium Bicarbonate instead of real medicine when I’d relapsed, and given a 10% chance of surviving, and why we need to PROSECUTE PEOPLE WHO SPREAD MISINFORMATION FOR PROFIT – OR WITHOUT DISCLAIMERS (Click here to lend your voice to the the Change.Org campaign now)

Alternative medicine can be amazing. Many, if not most medical therapies DID come from nature, and knowledge of traditional medicine. And I’d say the majority of naturopaths, massage therapists and yoga teachers only encourage you to be more healthy, mindful individuals.

But especially today, where memes on the internet are unquestioned truth, whilst scientific articles and doctors are doubted (and routinely made to be subjects of conspiracy theories), alternative medicine can be dangerous. The following examples may shock you. But it happens all the time. And it’s literally killing people. Cancer patients who use alternative medicine as opposed to proven therapies have up to a 5.7x higher chance of death!

A video from my series – Medical Factz – that outlines the ridiculous “Cancer is a Fungus, and sodium bicarbonate is the cure” theory that started from fraud, and ended in jailtime for manslaughter, and millions of others being deceived. 

 

Recently, Facebook took action after a natural birth Facebook Group urged an endangered patient to not seek medical treatment at a hospital. The baby passed away.

Right: Another pernicious danger seen often in Facebook groups… Toby is a juice advocate who sells juicing guides and products. He has no clue what cystic fibrosis is. Yet he is still trying to scam them to make a few Dollars. It’s sickening. Vertex is a pharmaceutical company who’s creating treatment for CF, by the way.

Left: One of the biggest proponents of unproven lies about health has to be the antivaccination movement. Find out how one man fraudulently wrote one paper (composed of made up patients and made up results) which caused this movement to go, pardon the pun, viral (he now speaks at conferences for tens, to hundreds of thousands).

This is just the tip of the iceberg. From treating children who contract various illnesses with essential oils and tumeric rather than getting them medical attention, to misleading desperate cancer patients with promises of miracle cures (something which has killed at least 2 friends of mine, to date), to prescribing natural therapy regimes which have left babies malnourished, likely suffering from developmental delays for life, we seem to hear about things going wrong for people every day these days.

Vitamins are often claimed to be efficacious in cancer treatment when this is far from the case. SBS did a feature on this recently. A compounding pharmacist was telling patients – as A NON CLINICIAN – someone who can’t legally advise on clinical judgements according to Australian, TGA legal guidelines – claimed that Vitamin C supplements could cure cancer or help patients. The 2 largest systematic reviews – the highest quality of evidence possible – have said a LOT more evidence is required. There hasn’t been phase 3, randomised controlled trials for this.  It is NOT indicated by the TGA as a treatment for cancer so even if her clinic is supported by GPs – its use is questionable and something I would be interested in reporting to authorities. Would you want big pharma skipping protocols and promoting unfounded claims before approval? No… Why should someone with NO training in this space get a pass? Multiple studies have discontinued high dose therapy use due to high toxicity. It should NOT be advocated for as a viable treatment. She did just that on national TV.

Could it help? Possibly – early studies have shown some improvement. Almost no cures. It it generally well tolerated. But toxicities have also been noted. I’ve been in a desperate position before… There are many options MUCH higher on my list of things I’d try if things got more dire.

Vitamin B6 and B12 was found in a prospective, observational study of over 77,000 patients (one of the highest quality long term therapies) have been associated with 30 – 40% higher risks of lung cancer (a 2x higher risk for patients taking high doses). Vit b12 has been shown to increase esophageal cancer as well.  Many studies show no positive impact on survival. SBS – the news channel which put this together an ‘unbiased show’ where professionals with years of experience and with backing of millions of patients worth of data in research were given an equal platform to individuals who ‘just felt better’ – even reported on an American study which showed vitamin supplements increased risk of all causes of death. Indeed – vitamins nearly killed me.

How I was nearly killed by bad advice.

The picture below outlines a scam I almost fell for. When I’d relapsed, I was given a less than 10% chance of surviving. Palliative care was suggested as an option for me. A second bone marrow transplant was a long-shot, but the only curative option.

At this time, a family friend put my family in contact with a researcher and scientist named Dr J, who promised to have a cure for me.

I was desperate. Willing to try anything. But luckily, I also had a year of medical knowledge under my belt.

We went in to see ‘Dr’ J one day at his apartment. He went into this theory of how sodium bicarbonate could cure cancer. One common, popular alternative therapy promoted by many, is the idea that “cancer thrives in acid, and therefore making yourself more alkaline will cure it”. He also purported another common alternative therapy – that “cancer loves, and is fueled by glucose, therefore low-sugar diets will cure it.” The former is largely known to be false. Cancers, due to their rapid, anaerobic metabolism of energy emit large amounts of lactic acid which PRODUCE an acidic environment. Not the other way around. And in any case – ‘alkaline diets’ or alkaline water will only result in less acidic urine, and slightly more alkaline saliva (not associated with alkaline blood). Your body’s buffer systems keep your blood’s pH in a 0.1 window. Even 0.01 higher or lower than normal ranges result in medical emergency. There’s no way for alkalinity to make it TO the cancer.

When I asked him about how you could make tumor sites more alkaline… he had no response. And when I asked him a basic metabolism question any 1st year student in any health degree would understand (‘if cancer feeds off glucose… your body will produce glucose from elsewhere by breaking down fats and protein if need be. Why wouldn’t the cancer just keep using that glucose preferrentially?)… he again, couldn’t answer me.

He showed me a few case studies from decades ago of 1 or 2 people who seemed to have had tumours regress after trying sodium bicarbonate. But even then I’d been reading on spontaneous regressions, and even then, I knew that if only a few case studies could be produced in the decades since we had this ‘common knowledge’ of how to cure cancer… then it was unlikely to be representative, or statistically significant. And after all this, he turned his attention towards my parents and started his sales pitch on why “Amway vitamins” could cure me. Again, no clear linkages as to why his vitamins were better (or why vitamins could cure cancer for that matter) were made. I later found out that Amway is a company with a pyramid-scheme model, designed to make money through the perpetual, impossible, addition of members who go on to onsell product, and earn commissions on all members they bring into the program. “Dr” J was probably locked in this trap himself.

 

John Oliver, in his brilliant style, breaks down the fraud that is the many mutli-level marketing companies that exist worldwide. 

 

Family and friends pressured me down his pathway. They said it couldn’t hurt. They told me to believe in him. They took me to a seminar where he waxed on and on, and brought up people with chronic conditions cured by his miracle therapies (when likely, their changed lifestyle habits were the real fix), where he wanted me to speak, to endorse his treatments.

I didn’t.

If he, a scientist working at the University of Sydney, couldn’t answer the questions of a 1st year medical student, why should I believe him?

Instead, I went out and looked up every journal I could, and every clinical trial going on in my disease around the world (something easier to do than expected – thanks to this amazing site that anyone can use called ClinicalTrials.gov) – I looked through all my options and presented one – Azacitidine – as a promising option to use to increase my odds post transplant to my doctor. With my doctor’s help, I got it.

 

It’s likely because of that drug, and hundreds of thousands of hours of work from scientists, and doctors around the world, that I’m still here today.

Yet, if I hadn’t had the knowledge I did, “Dr” J above could have killed me.

If you’re in a similar position – but don’t have medical training, please, PLEASE do a simple search on ClinicalTrials.Gov and/or your national clinical trial database for options. When I was looking up my own therapy – it helped me see trends of new therapies and backed my case to my doctor to get me the drug I needed. It’s simple to use – I’ve suggested it to numerous patients who’ve found second options and benefited from REAL SCIENCE through this. Please – try this first!

 

So why does this happen? Isn’t it illegal?

Consumer law protection exists for this kind of stuff. Yet misinformation like the above is rife within the multi-billion dollar alternative medical industry. You can’t sell TVs or Fridges based off false statements and claims. But somehow, it’s OK to gamble with other peoples’ lives, in health.

Why? Well, I’m not a lawyer. I’d love to hear from any medical malpractice lawyers out there who’d like to offer their own perspectives. But one major issue is that legislation against this kind of thing, around the world often lacks teeth.

This great article discussing the UK’s  Consumer Protection from Unfair Trading Regulations 2008 in regards to alternative medicine – goes into some of the issues. Interpretations of the law are often not as clear as their intentions, in the eyes of lawyers and judges. Though it seemingly is clear that the defendent, not accuser, has to prove the claims they make are true, in practice, it often is up to the accuser to prove something’s false. Proving a negative is very difficult. And in a field where not much research is done… this becomes tougher. In addition, a lot of the time, enforcement isn’t followed up on laws. The Competition and Consumer Act 2010 (Australia), and numerous precedents and investigations done by the FTC also mark many of these practices as illegal.

Yet millions get away with this. Indeed, social media and fake news is a big proponent of this too. There are thousands of influencers with millions of followers making millions of dollars pedaling misleading, and often dangerous misinformation. Wellness is a half a trillion dollar, largely unregulated industry. Chinese Medicine, which I tried, were found to have 127 different types of fungal contaminants in just 15 herbal mixes.  And innocuously, there are thousands, maybe hundreds of thousands, advocating for unproven therapies in Facebook groups – turning people away from real therapies – sometimes profiting, sometimes spreading misinformation. People and groups like this, I see everyday in cancer groups where I talk and interact with other patients.

A dangerous meme from a dangerous page. Mamograms are PROVEN to save lives – and their risks and benefits have been studied and found to be effective in reducing mortality in high level studies. The amount of radiation exposure is safe and though there are new therapies coming through the pipeline – Thermographs are shown to be INFERIOR to mamographs. Natural News is a notorious ‘news site’ which spreads dangerous misinformation.

 

Why are they never sued? Well, sometimes they are. Robert O Young, a proponent of the “cancer is acidic, and alkalysing the body is the cure” lost a lawsuit that forces him to fork over $105million to his victims. Dr Simoncini, proponent of the “cancer is a fungus and sodium bicarb is the cure” alternative theory that has been thoroughly debunked is serving a 5 year jail sentence for manslaughter, after he continued to treat people for tens of thousands of dollars a pop at his clinic, despite being convicted of manslaughter and being deregistered earlier in 2006 as well. Doctors prescribing miracle “Defeat Autism Now” therapy regimes which have no scientific basis are currently being sued too. 

But often, quacks and frauds USE the law to continue shady practices. Another naturopath and proponent of the sodium bicarbonate cures cancer movement is suing a whistleblower to ensure she can keep her operation running. A senior member of the renowned site Quackwatch was also sued for defamation.

And often, this stuff goes unchecked on social media. Not just from unscrupulous people like Toby (pictured above), but also from “Influencers,” and “Wellness Gurus and Coaches” who post deliberately misleading posts to millions of followers to sell their own products, or that of other, often unproven, wellness therapies.

An example of one of Facebook’s most virulent anti-science influencer. Sure, it isn’t one of his more ludicrous posts which does things like dissuade people from getting proven, effective therapies for their serious illness, but it shows how far some of these people are willing to go to make a quick buck. Click here to check out a video I made spoofing many of those viral ‘health fact’ videos you see these days.

 

But you know what, I’m sick of this.

Things like this seem innocuous. But it literally kills millions every year. It scams people, many of whom are already under heavy financial strain following intense treatments, of tens of thousands. It’s taken the lives of at least 2 close friends who had other, better options still available to them, and likely many more people I’ve known too.

Alternative and complimentary medicine can be amazing. The fact that practitioners actually sit down, and take the time to listen to you as a whole person is a big reason why it’s so popular. There are many massage therapists, yoga instructors, aromatherapists, dietitians and naturopaths out there who do know their stuff, work with doctors, abide by laws – and they help DO help millions. I benefit from many of the above.

But it’s when they do things like this that they become dangerous.

I believe we need to crack down on this industry, and the crooks who lead millions astray every year. We need to #MakeAlternativesGreatAgain – and when people make false health claims – we need to #LockEmUp – for the good of society – if they make unfounded health claims. If you agree – check out this change.org campaign I’m running soon.

1) IF YOU MAKE CLAIMS PERTAINING TO HEALTH – claiming a therapy WILL cure or fix a condition, or encourage others to try such therapies, without any evidence to back up your claims, without inserting disclaimers or saying “May” – YOU SHOULD BE CULPABLE, AND YOU SHOULD GO TO JAIL if your advice ends up harming someone.

2) – If you profit from the sales, in any way, of products with purported health benefits, YOU SHOULD HAVE TO MAKE THAT CLEAR, and it SHOULD BE YOUR RESPONSIBILITY, to check the validity of those health claims.

I’ll even go so far as to say:

3) If you share misinformation, without any reasonable scientific or other evidence behind it, and it ends up harming someone – YOU SHOULD BE PROSECUTED AS WELL.

 

If not… scumbags like these will continue to exist, and prosper off the suffering of good people. Check out the Change.org campaign I’ve made and add your voice to this campaign for science and reason.

Bell Gibson fraudulently made millions after faking that she cured brain cancer with diet and alternative therapies. Millions of dollars escaped fines. But how many she led astray of real options will probably never be known. Full article here. She joins other fitness and wellness ‘experts,’ such as Sarah Stevenson who’ve falsely claimed they’d beaten a cancer which spontaneously regresses in over 1/4 people due to diet and wellness alone, and then gone on to fraudulently provide wellness coaching sessions, for $300 per 50 minutes (rates doctors who’ve studied for decades don’t charge).

 

There are numerous examples of scumbags like this out there. You may well already be following them. If you are, and you don’t see links to journals, or any kind of evidence which backs up their claim – do me a favour. Unfollow them. And if they say something which you feel may be harmful to society – tag me, @nikhilautar, or use the #LockEmUp to help bring them down.

 

What I’m doing about it.

I’ll be running this campaign soon, this is one thing. But my Startup – Centered Around You – actually aims to be the first app of its kind to not just provide evidence based wellness advice – but TEST IT TOO. A combination of machine learning, my own passion for research, and inputs from world leading clinicians, researchers, and coders/designers, advised by CEOs, senior VPs and heads of national operations of international and ASX listed firms advise us. We won Australian Student Startup of the Year not long ago. Along with numerous other prizes (we made the finals of the Global Impact Challenge, won NSW Student Startup of the Year in a separate competition, and have received numerous other grants and rewards for our work).

Our medical devices will also make life safer and easier for elderly and disabled patients. We are testing with some of Australia’s largest nursing home chains in the near future.

And our products have also generated interest and pre-sales from people interested in getting a better night’s sleep too!

Check out www.GetToSleepEasy and CAroundYou.com for more information.

 

I’m always here to talk. You can reach me (I am incredibly busy, but strive to read all my emails) at info [at [ nikhilautar.com

 

 

Blog

Think Medicine Sucks? Think You Don’t Make a Difference? Try This.

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So recently, a I was linked this article by many people. It’s been all over my Facebook feed, and I’ve been told to read it by many.

It’s really well done and articulates the challenges of hospital well. On both the doctor’s and patient’s side. It goes into the powerlessness patients feel, the confusion they face in hospitals, and the struggle of being a junior doctor in a system that’s pushed to its limits, and seems not to care. It features some really amazing artwork, and is told in the form of a cartoon, that really does capture your eye. As much as I may seem like I’m bagging on it now… it really is well done, and I highly recommend you give it a read.

photos and full article available at The Guardian. 

 

But regarding the “novel” realisation that being a patient sucks…

A) No Shit.

Every 2 months a ‘profound’ article comes out after a doctor enters ED or faces his own health challenge and suddenly realizes – “holy crap I was treated like shit,” and i slapmy head. Hard (it’s probably why my memory sucks so much)…

You see it all the time in your patient’s eyes. It doesn’t take huge amounts of ’emotional intelligence’ to see that. You get used to it and start thinking “that’s just how it has to be.” and you are, quite reasonably, tired yourself, and often unable to do anything.

B) Where you can, instead of clapping your hands and crying ‘amen,’ go do something about it.

Take it from someone who knows… the tiny, little things which HARDLY takes time out of your day make a HUGE difference. When someone asks for pain meds, and they need it, chart it asap. And tell them, or get your nurses to tell them if it’s gonna take time, and explain why if it is going to take a while. “I haven’t got time right now, but I’m gonna try my best to get it to you asap” reduces suffering 90% compared to just being left hanging. Believe me, it does. Same goes for if you’re late, generally, in a clinic, or whatever.

Ask patients if they understand what you said when you chat to them, and if they have any questions. It’s not wasting time. It ensures that they buy into your treatment plan and comply with recovery, and they’ll trust you, divulge everything, and give better histories. If you’re too busy, let them know that you’ll get around to it when you can or to ask the nurses when they’re around next.
Asking about those little things like work, if they’re okay to get home, how they get their medications, is, for similar reasons, not a waste of time. And, importantly, they make you feel cared for.

The tiny things – greeting people warmly. Asking how they’ve been, talking about things important to them as you walk to your consult room… they are HUGE. My haematologist does that. There’s a reason why I drive, or take a train 1-1.5 hours each way to see him.

Because I feel CARED FOR.

That feeling is EVERYTHING. It’s your most powerful tool as a healer.

From someone who’s gone through enormous amounts of physical agony… trust me that I know what I’m talking about when I say that psychological/ emotional agony is 100x worse. And you ALWAYS have the power to change that. No matter what.

I get it. It feels hard to keep giving. Day in and day out, when you work such a stressful job and face failure on a constant basis… when you’re depressed and when everything feels even harder to do than normal… giving back becomes even harder. It seems futile. For many reasons – we doctors don’t take it as seriously as we should. Just going on and telling yourself you can’t do much is how we cope with it. But that’s the biggest trap of depression. Though playing the victim and focusing on the things that stop you is easier at the time, it really makes you feel shitter in the long run.

In truth though, doing the right thing – going “that extra mile”… it’s really as hard as it seems. The little things make just as much of a difference as huge, epic gestures. And ultimately, you being the good person I know 99% of doctors are underneath, wherever you can, helps YOU too. It reminds you why you got into this. It reminds you that you DO and CAN make a difference.

It isn’t that hard to do. And, like with anything in life, making the decision to give back where possible becomes habitual too. It becomes your norm. So anyone reading this… next time you’re out there… go that ‘extra’ foot or two. I guarantee you. It’s worth it.

This was a talk I did for the Australian Indian Medical Graduate Association’s annual general meeting a few years ago. I was quite raw… I’d just come from the funeral of an old friend and fellow medical student who’d taken his own life. I hope it helps those of you struggling out there, wondering, “what’s the point?” realise, that you can and always do make a difference.

 

 

Medicine and Science

How to Ensure Cancer Treatments Keep Imrpoving and Make the Drug Development Cycle more Efficient.

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This was my submission to an essay competition run by the Cancer Council of Australia a few years ago. It was shortlisted but didn’t take down first place unfortunately! I was probably a bit too industry/business model focused for what they were looking for! It does outline major challenges facing drug development though – something fascinating to many, for sure! Let me know your thoughts!

Ensuring Cancer Treatments

Improve with

Advances in Research

 

Nikhil Autar
University of Western Sydney
Cancer Council 2015 Essay Competition

 Outline

Cancer treatment has come far over the ages; from the barbaric beginnings of radical mastectomies and infusions of mustard gas1, to the robotic thyroidectomies of today, and cancer outcomes have followed suit2,3.  This is largely attributable to dramatic leaps forward in medical knowledge garnered from research4. In order for advancements in treatments to continue, it becomes apparent that continuing our investment into research is necessary. But in order to maximise our impact, we must consider the direction oncology and treatments are heading, invest in the most
promising of prospects, and ensure our research system has maximal efficiency. In this essay, I’ll discuss the changing nature of cancer treatments and outline where and how we should direct our research to achieve maximum improvements for patients. I’ll also delve into the challenges clinical and academic research face, and suggest systemic solutions that will ensure research of all kinds are done in the most time-and-cost efficient manner.  And finally, I’ll discuss the importance of preparing future physicians to deliver the fruits of research.

Epidemiological:
Increasing Incidence Due to Age

Before discussing solutions we need establish how the field is changing. Largely preventable cancers, like lung and colorectal cancer, are declining or stabilizing in most-all developed
nations5,6, following improved treatments, systems, screening programs and prevention measures7,8. But overall, in the developed world, cancer incidence by type is changing slowly5. The major epidemiological change is an increase in overall cancer incidence due to an older population9-11, who, through various intracellular and extracellular processes, are more likely to develop cancer12,13. Hence research, especially clinical-trial research, should reflect lower tolerance of toxicities, higher rates of co-morbidities14, and other factors prevalent in older populations.

Biological:
The Targeted, Personalised Future

Where oncology is changing most though is in the direction of new treatments, and advances in cancer genomics is driving much of this change. The human Genome sequence set the ground-layer of this field, allowing for cancer genome analysis to occur, and predictions of cancer genomics leading to cancer biology discoveries and guiding patient treatments are already proving true15. Large projects such as The Cancer Genome Project and The Cancer Genome Atlas, which identify and store tumour-mutation profile in databases and direct research from data collected, have already elucidated aspects of cancer biology and development47,48, found potential targets for therapeutics17,18and highlighted many tumour profiles that influence clinical management of individual patients today16,19-21The latter benefit of genomics describes another growing trend of  personalisation in cancer treatment, and this has led to new lines of treatment that differ from traditional small-molecule (small, biochemically active molecules that engage with pathways of cancer development and progression) applications. Biologicals, such as monoclonal-antibodies and growth factors are being recognised for their more targeted, less toxic applications25as well as their increased likelihood to pass early drug development23, and are already attracting more pharmaceutical patents than small-molecules24. Biologicals also offer novel avenues of delivering drugs to cancer sites and cells26,27, especially significant given our growing knowledge of the importance of the tumour-microenvironment in promoting tumour survival and protecting them from drugs39-41,49,50 , joining the ranks of other innovative delivery systems such as nanotechnology28,29. Microenvironment importance has also driven new lines of therapy targeting angiogenesis50, epidermal-growth-factor and downstream pathways109,110, and the newfound understanding of the role of stem cells in tumour growth and recurrence are leading to new therapeutic lines too42-44.
Biologicals have also opened up many exciting avenues in an already exciting field of therapy; immunotherapy22. In addition to the recent discovery and early trial successes of checkpoint inhibitors that work on CTLA4, PD1 and PDL1, which work by allowing patients’ immune systems to recognise and kill cancers30,31, the use of biologicals like monoclonal antibodies, which attack cancers by targeting or attaching to proteins on cancer cell or host tissue surfaces32-34, cancer-antigen vaccines35-37and T-Cell Modification therapies38, which prime patients’ immune cells to recognise and kill tumours, are promising potential treatments. 
When these are combined with increasing discoveries into processes that aid cancer treatment and research, such as the discovery of new bio-markers and the development of adaptable trial-designs45,46, future avenues of cancer research are promising, varied and diverse. But due to the more isolated nature of these targets, the heterozygous natures of tumour mutations, and the multitude of tumour-genesis and survival pathways15,41,42-44, these treatments need be combined for maximal clinical benefit.  

Translational: Less New
Drugs, More Expensive Research

Yet though there are many avenues, and much research directed to new treatment pathways, less and less are being translated into treatments. Industry, which funds the vast majority of clinical trials51, is bringing significantly less new molecular entities(NMEs) to the market each year52-55, despite exponential increases in the amount invested into trial research53-55The tremendous, increasing cost of developing and funding drugs through  clinical trials and approval is the reason behind this reluctance to invest in new therapies. Funding a drug from early trials to approval costs in excess of a billion dollars70-73, with more recent analyses showing companies spend as much as 4-11billion per drug78. This takes between 11 and 14years74; all for a 6-11%75-77chance of being approved for sale. Most of this is attributable to increased regulatory requirements79, reduction in effective patent, marketable, length, by a third80,81,a shift to more targeted treatments, causing drug peak-sales to halve82,and higher attrition rates in early discovery81.
Big-Pharma has reacted. Since 2008, pipeline sizes have decreased by a fifth in top Companies like Pfizer, with the proportion of budget diverted to R&D following suit56-60, and patent filings have also fallen by nearly a third industry-wide61, highlighting this reluctance to initiate new projects. Simultaneously, marketing and sales, which obscure and corrupt physician judgement62,83and harm investor confidence through bloated sales forecasts63, have increased to half the budget; double that of R&D spend62,64. The nature of drugs developed are also impacted by the nature of pharmaceutical investments, with more “Me-Too”, copy-cat drugs; ones that mimic the actions of already developed drugs, hence producing only-slightly-better-than-previous outcomes, being funded in preference to novel ones65,66. Also observable is a focus on blockbuster drugs, those targeting diseases with larger markets, which garner higher returns67,68over rarer, underfunded diseases like neuroendocrine cancers4,69. Other factors such as managerial pressure to deliver short-term profits exacerbate this68, but the reluctance to initiate projects by industry is by far motivated mostly by this cost/time intensive, risky investment that is drug development. In order to stimulate industry, more streamlined, innovative trial structures must be enacted to reduce costs and foster innovation.
The changing nature of oncology established above highlights that systematic changes need be implemented to ensure continued improvement of cancer outcomes. The Australian government can play a crucial role in strengthening clinical trial infrastructure and funding to support industry in Australia, and electronic databases may present a unique opportunity to do this. Research, both industry-funded and academic, should be directed toward promising avenues of cancer research, and strategic direction and partnerships can improve output.

Improving
Clinical Trial Infrastructure

Australian clinical-trial centres have great potential in attracting more industry activity that benefits not only oncology, but also overall care for Australians. Australia is already renowned as a quality nation to conduct trials in; we produce high quality, reliable data accepted by regulatory bodies around the world, have fast ethics-approval structures and an informed and willing population84,85. But Lisa Askie, the manager of the Australia/New-Zealand Clinical Trial Registry, professed, in an interview I conducted with her that Australia needs “more investment in clinical trial infrastructure”, as sites are “underequipped” and “many trials are done on investigator initiative” with little in the way of compensation made for clinical staff conducting trials85. The government’s role in this is clear. Though industry funds nearly 70% of trials in Australia51, it employs only a quarter of clinical-trial staff51. She pointed to the UK’s system in particular as one to emulate.
The UK implemented the National Cancer Research Network after noting their cancer survival and cancer-trial recruitment rates were remarkably low compared to other developed nations86-88. The central features of this overhaul included increasing the number of clinical trial sites along geographic distributions, increasing clinical-trial staff, coordinating both research focuses and enrolment services nationally to increase synergy in the system, and increased funding to public research bodies86,88,89. And it worked. Cancer clinical trial participation increased five-fold88 to world-leading rates, clinical-trial recruitment target fulfillment nearly doubled88, and, most importantly, improvements in patient outcomes and access to trials and new drugs were noted90-92. Hospitals that conducted trials provided better care with lower mortality rates, likely due to more trained, up-to-date physician teams92. Increased economic benefits from industry was also observed, with industry-funded trial staff and investigator numbers rising88. Liverpool Hospital, Sydney, has self-funded the establishment of its own clinical-trial site to a point where it’s self sustaining, and even bringing profits to the hospital, showing such increases to infrastructure is feasible in Australia too137. With Australia’s already positive physician perception of clinical trials51and the fact that industry provides $650million in investments93 and $100million in healthcare savings to the nation94, it’s clear that any government investment that facilitates more clinical trials in Australia is a wise one.   

Using
Technology to Reduce Time and Costs Taken to Trial.

Though structural changes to clinical trial funding is invaluable as a means of reducing time/cost taken to trial, technology has even greater potential to streamline the clinical trial process. actors that have escalated the time-and-cost of conducting clinical trials exponentially are systemic and greatly increase pre-trial attritions of potentially game-changing compounds too68,100. 90% of clinical trials are finished later than scheduled, with patient recruitment accounting for a quarter, and data collection and discrepancy resolution taking up two-fifths, of time96,97. The reasons for the former are varied; physicians don’t even consider clinical-trials 40% of the time98, patients are hardly aware of their existence98,136, and even physical encumbrances like distance from trial centre hamper patients’ trial enrolment rates98,99.
In his best-seller, Bad Pharma, Ben Goldacre not only lambasts Big-Pharma for their unscientific, unethical practices, but also suggests a novel solution for these issues that is currently being trialled in the UK83,95. He proposed that Electronic Medical Records (EMRS) be harnessed as tools to conduct live, randomised trials, arguing key issues prolonging time to trial like time spent recruiting patients, data-collection delays, and also that overall trial costs would fall significantly through such a scheme83,101. They have added benefits of being able to conduct retrospective analyses; saving millions in PhaseIV study costs, provide more clinically relevant and representative results, and can even evaluate combinational therapies101. Research applications of EMRs has been recommended by the American College of Physicians103, but in establishing such a system in Australia, measures like communicating benefits and privacy-securing measures to the public; why UK’s Care.Data failed to pass parliament102, ironing out ethics and efficiency issues101,104, and forward thinking in database-design, which minimises complex, costly data-mining and ensures data quality105,106, need to be considered to ensure our E-Health Record is widely used and effective for research purposes.
The ability to study the effects of combinational therapies is a promising application of trial-friendly EMRs, but even if they were to exist now, industry and regulatory bodies need to modify policy to facilitate their trialling. Many upcoming drugs, due to the trend of more targeted therapeutics being developed, isolate single strands of the web of cancer-cell biology, and, when used alone, will allow cancers to survive down alternate pathways, resulting in reduced success and increased relapse rates15,41,42-44,107-110. Hence combination therapies warrant further investigation. However, though there are many examples of combinational therapies improving care outcomes significantly, between both standard114-116, and more targeted therapies111-113, regulatory bodies’ policies currently restrict their investigation. The FDA heretofore have required such therapies to be given in fixed-dose combinations; in the same vial or tablet with set compound ratios117; understandably hard for biologics, which usually require intravenous administration25, personalised immunotherapies, and personalised dose-analysis studies, to do. They’ve responded to the need though by drafting a policy that allows two therapies to be combined into one “co-development” study, and data to demonstrate the contributions of each drug to be attained from earlier trials or pharmacological studies rather than expensive, time-consuming, clinical-trials118. This should stimulate more investigation. But another factor which stops these combination studies from happening is the conflicting financial interests of pharmaceuticals.

Teamwork
Strategies That Unite Researchers From All Sectors

The latter factor is one that seems impossible to evade, but recently, teamwork has become prominent in cancer research; something much needed45. Consortia, an association of multiple bodies with shared research goals, bring together all sectors; not-for-profits, government and industry, to create broadly-usable tools such as biomarkers (useful for diagnostics, clinical trial evaluation and acceleration of drug discovery/development121) that would otherwise be deemed too economically infeasible to fund by singular entities120. Data-sharing is also a focus of many consortia, reducing wasteful duplication of research and producing invaluable knowledge-platforms, such as the cancer genomics consortia discussed above47,48,120. The development of innovative Intellectual Property contracts in Industry Consortia, that allow short term exclusivity of discoveries made by members, also spells out future hope for industry working together on projects where both parties can benefit, such as combinational therapies117.

Strategically
Directing Basic research

Foundation and government research is a lifeline for treatment development, and should also be optimised through teamwork and strategy. Basic research required to discover biochemical pathways and therapeutic targets and proof of concepts, seen as the investment “valley of death” by pharmaceuticals122, for their inability to deliver profits, are essential to therapy development. 85% of this research is funded by governments and foundations123. In addition, rare or neglected diseases, and recent personalised immunotherapy developments, which are largely unprofitable,
require this sectors’ funding4,120,122,124
Innovative,  assertive, collaborative strategies, such as the one used by Australia’s own Cure Bain Cancer Foundation, reduce wastage and increase output in this vital research stage125. The Foundation proactively outreaches to researchers when providing grants, saving over a month of work per-researcher-per-year135, collaborates, and indeed, directs research strategies for the Global Brain Exchange consortia126, and works actively with industry to ensure treatments reach patients125. Similar strategies, if employed by others, would lead to leaps-forward in treatment prospects, and thence, patient outcomes. 
The complexities associated with the personalisation of clinical management and our ever-expanding discoveries in fields like genomics are already stumping doctors127. Though innovative educational tools, such as medical calculators129and the Regulome Explorer genome-map128, and technological training are being provided to bring doctors up-to-date, the most effective way to ensure future physicians are aware of, and can apply these advances is to teach them in medical school. This knowledge isn’t just necessary for future oncologists. All specialists are becoming more involved in cancer care due to multidisciplinary, team-based care130, and GPs, comprising nearly half the profession131, have the most important, currently underused role, in prevention and co-management of cancers132-134. With cancer burden only rising9-11, this becomes vital.
The changing landscape of oncology due to advances in research has made it essential we transform and optimise our clinical trial infrastructure, focus of research and research partnerships, so patient outcomes continue improving. The recommendations made in this essay provide benefits not only to science and patients, but also to industry, researchers and Australia’s health system, and many suggestions can be implemented around the world too. There are many other complex interactions and strategies that can further increase the output of new treatments that couldn’t be discussed in the length of this essay. I’m actually writing a book on the topic. But the fact that there are many pathways and much desire to improve treatments makes the future of cancer treatments bright. Hopefully, these suggestions, if implemented, will make them even brighter.    
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Word Count: 2499 (headings not included in count)
Inspiration/Motivation/Help

It’s been a while… But I’ve been working hard.

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So it’s been a while since I posted something here. A LONG while. Sorry to all of you!
So where have I been? What have I been up to? Well, I’ve been working hard. Promise. I’ve nearly finished my research degree – the one I decided to complete while I waited for my immune system to strengthen, so I could do medicine again. Hopefully I’ll get some publications and formally contribute to science and human development! 
 
But I’ve also been busy on this startup. One I think could make a huge difference, and hopefully, save many lives. 

So, what are we doing?

I started this up after losing a couple of friends to preventable illnesses and complications. Things like falls, pneumonias, and pressure sores are our most common causes of hospitalisation, they take tens of thousands of lives per year, and cost us billions as well. I looked into the problem. Talked to a lot of nursing homes, patients and carers. And I realised there was an opportunity to create something that made life easier, reduced work for nurses and healthcare staff, prevented these issues – all at an affordable price point!
 
That’s when I founded Get To Sleep Easy. How are we accomplishing this? Through our Smart Inclining Bed. This is a device which sits on top of your bed, and converts any bed into a hospital bed, for a tenth of the price of current beds! In addition to this, our smart sensors underneath can map user movement for a fraction of the price of current technologies. This allows us to, for the first time, let nursing homes, and people like you and me, who wanna keep our loved ones at home longer, be alerted of things like falls, pressure sore development – even if someone’s stopped breathing! Plus, we’ve got some other cool innovations in the pipeline too. Check it out! And be sure to sign up to our email list if you’re interested in becoming a test partner, or just interested in our development. Click here to sign up specifically for that – and click here to join my email list!

 
I’d love to share some awesome news… After a long month of campaigning, and losing a few friends from a bit of spam – we at Get To Sleep Easy won Australian Student Startup of the Year last week, at Startcon (the biggest startup conference on the scene)! 
 
 
 
It’s a huge honour. If you did know about this, whether you voted or not… I’d just like to say thank you, from the bottom of my heart, for all your support. 
 

So where are we? What comes next? 

Well, in a completely separate competition… we may be getting flown out to become GLOBAL Student Startup of the Year (that’ll be amazing). We’ve got working prototypes which we hope to test with our amazing nursing home partners in 3 – 4 months time. For reference, we’ve got a device that converts any bed into a hospital bed for 1/10th of the price and smart sensors that detect and prevent falls, pressure sores – even if someone’s stopped breathing (let me know if you’d like to test these, or get one for loved ones!)! We’ve got opportunities to jump into some prestigious business accelerators which will turbocharge our progress, for sure.

 
And finally, in a few weeks, we’ll be doing some crowdfunding that’ll hopefully get us much needed cash, get our brand out there, and show, even more, to future investors how much these things are needed! I’ll email you on day 1 of launch if you sign up here (your support then would help us out in getting us seen through the Kickstarter algorithm – I’ll explain more in a few weeks). But if you want, you can help us get there faster by supporting our GoFundMe too!

The Mellow- the most ergonomic, scientifically designed pillow on the market! Check this and other products out at GetToSleepEasy.org or support us on GoFundMe!

 

Other updates!

But yeah. Hopefully this can go on to make an impact.
 
In other news, for those of you who follow along on Facebook or Instagram, you may have heard about my recent health troubles… A few weeks ago, I had another cancer scare, after also getting a few sezires. But I’m glad to report all seems to still be well! Here’s hoping there won’t be any other scares like this in the future! 


My research – I’ve completed the degree/exam components! Now I’ve just gotta deliver my research project to graduate from that research degree! Hopefully, sometime over the next few years, I’ll be healthy enough to get back into the wards, but Get To Sleep Easy, if we keep going the way we’re going, will ensure I can keep making an impact, no matter what!
And I’m also writing a book too! Definitely check this out if you’re interested (I need people to act as editors, for sure!)
I’d love to hear more about how you are. Again, thank you so much for all the support you’ve given me. Let me know if there’s anything I can do to help you. And let me know what you think about Get To Sleep Easy too!
Blog

How to Ignore Chronic Pain and Hack your brain to beat it. A step-by-step guide.

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I wrote this up for a friend recently. And as some of you who follow me know, I’m writing a book about my experiences through cancer, and the science behind the mentality which kept me going. But I realised recently that I hadn’t written up what I wished I did have when I was suffering most from chronic pain… A step-by-step guide which showed HOW you could beat this back.

The thing is – when you have something like chronic pain… everyone around you has suggestions. Eeryone suddenly becomes an expert. When you’re already so drained, physically and emotionally, from the condition itself – being told about miracle cures and being sold things that ‘WILL CURE IT ALL’ is not only heartbreaking, when you find measure after measure fails, but also depressing, in and of itself.

So I’m telling you straight up – this isn’t a miracle cure. I still have issues dealing with the sleep and fatigue I get from this chronic pain/cramping/fibromyalgic-like condition that I have. I still do get frustrated by how it limits me, at time (though I can ignore the fatigue as well, I know it’s healthy to respond to REAL signs it needs rest). With this system, I still feel pain. But my suffering because of it has decreased significantly. It wasn’t even hard to do this. It didn’t require an ounce or bravery, courage or willpower. It did take time. But today, I can, and do ignore pain as it comes on, automatically. Without willpower, or effort, or, as I talked about above, an ounce of bravery or courage. I hope it helps you do the same too.

 

 

It took a few weeks to get there. But the key to this is that I had this long term goal in mind – of getting to a point where my mind would automatically ignore the pain when it came on.

I knew I could do this because I was on duloxetine – an antidepressant – for a while 2 years ago, and that helped me, despite it not actually stopping the cramps which initiated my pain. While I was on it… the pain still happened, but it didn’t affect me as much. This powerful evidence of this working –  of me being able to ignore pain – in the past, really helped get through my head that I could indeed accomplish this. That I COULD ignore chronic pain, which really helped me stay on track.

But it was also reading about the science of chronic pain that solidified this belief and gave it backing. I looked at how greater connections between attentional centres and emotional ones, amongst others sensitizes us to, and enhances the impact of pain via neuroplasticity. I also read about neuroplasticity in general (the science of habit formation in particular), and the effects of positive reinforcement on strengthening mesolimbic (aka reward) pathways – which has numerous effects that makes a thought process or behaviour addictive, and hence, easier to maintain  – from our amygdala (emotional centre), to the pre-frontal cortex (responsible for planning and attention) to our hippocampus (a vital part of memory) –

By learning everything I could about these things, and combining my findings, I figured out how I could hack this process, via positive reinforcement, to make the journey to get to a stage where neuroplasticity would change my reaction to pain, easier. Below, I go into this process, step by step, in a manner that could help you out too!

 

I’ll be talking more about this, and referencing hundreds of articles which helped me ‘hack my brain’ in my book – do sign up to my email list and I’ll keep you updated on its progress! But, these steps I keep talking about are not only simple and replicable, but makes this process easy too!

1) Take a step back and look at the pain I was facing – when it was worst, when it was best etc. and wrote that down.

2) I saw that I could, and did ignore pain when I was feeling happy, when I was on that antidepressant (it didn’t reduce the cramps themselves, but did help me ignore them). When I was able to attach less importance to a burst. I then latched on to that.

3) I knew that I could ignore it, and could focus on stuff that made me happy – and make that an automatic response, in a matter of weeks, as neuroplasticity could rewire my responses to pain.

Almost mantra like, nstead of focusing on the pain once it occurred, I told myself “This is an aberrant, faulty signal that I shouldn’t be attaching significance to,” that “it would be over in seconds – minutes” that “getting annoyed by it, fretting over it happening again was only gonna make it worse” and told myself that “focusing on something else was more constructive – why not do that instead?”

and

4) I rewarded myself every time I ignored the pain. And I allowed myself to be human – acknowledge there would be times I’d fail along the way – but that in the long run, I would get there.

After a week, as I got better at this, I even started looking forward to cramps coming on as an opportunity to show myself I could do it. I’d addicted myself to getting better at doing this. It became easier to do.

After a month, my reward pathways kicked in and I didn’t have to keep rewarding myself – exponentially growing hits of dopamine surged through me as I got closer to my long term goal (another observed phenomenon that my research assured me would kick in).

In 5-6 weeks, I didn’t have to tell myself any of this at all. I was automatically ignoring chronic pain when it struck. IT DIDN’T EVEN TAKE WILLPOWER – or me reminding myself of those ‘mantras’-cum-realisations I did in step 1 and 2. Neuroplasticity made this a habit. One I maintain to this day.

 

Maybe this could help some of you guys out too.

It isn’t perfect. When I cramp these days, I do still cry out and it does still stop me from doing things as it physically takes a lot more effort to do things when you do have issues like what I have.

But I have been able to ignore the pain more often than not.

 

My psychologist told me “you have to accept the pain”. But doing that was REALLY HARD – accepting that and saying “I may suffer like this all the time…” was impossible for me to just jump straight into. CBT and all that, I mean it could have helped, maybe… but again, that was hard to maintain.

It was the preparation of this mindset – the manipulation of my reward pathways and neuroplasticity – and the knowledge it could – that helped me stay on track. The acknowledgement that it’d take time, and knowing I’d fail and feel crappy some days – but that in the long run, I’d get there – prepared me. When failure did come, when I felt pain overcome me (I knew I inevitably would in my journey),  I’d grit my teeth and bear it, but found myself focusing on the long run, and taking solace in that I would get there, instead of trying to be this ‘brave, strong dude who had to ignore everything’ which I could not. That helped me persist with this and get to this stage I’m at now, where I do ignore the pain, as an automatic response, when it comes on.

 

I think it could possibly help some of you. I wrote this out for a friend, and realised I didn’t have a ‘lay-over’, something to help people as I kept working on that full sized book (don’t worry, it’s only going to be 30-40 pages). So I thought I’d share this with you guys too. Again – sign up to my email list (I only email people once a month or so, don’t worry), and you’ll know when that books’s finally out. I’m gonna try and make it free too!

I know how much is sucked being told “It’s all in your head” when I was really in the dumps because of all this, that’s why I don’t wanna kid you and let you know that it’s not perfect. You can ignore fatigue as well, I’ve found, but my recent health run-ins made me realise that ignoring legitimate signs your body is suffering (something pain is not) is not exactly healthy.

But I hope my getting there can help some of you. Feel free to hit me up if you wanna talk it through – info at nikhilautar.com will ensure you reach me. I’m also decently active on my Facebook page and have a startup – Get To Sleep Easy – I run (we won Australian Student Startup of the Year actually! Check out our GoFundme.) which I’m always working on.

 

But ultimately – the thing that helped me most was the realisation that this life can be very long. Why make my suffering worse by lingering on it? Why let it take anything more than me than it should? That’s what really got me thinking about this.

Let me know your thoughts – good or bad (Please… ROAST ME if you hate this post. I wanna make sure what I’m saying helps the most people possible. I won’t mind at all if you completely hate this).

 

More about my pain condition –

So I’m an ex leukaemia patient, current graft versus host disease sufferer and get chronic cramps. This is sort of common post transplant, but doctors aren’t too sure about what it is, how it happens, and have no clue about treating it in general. You can read more about my journey here. 

I’ve got motor and some sensory neuropathy, and there’s definitely fibromyalgic elements to it too – it was looking at fibromyalgia that got me to ask my doc about duloxetine, actually. Something that had changed my life for the better for a long time. If your suffering is because of something similar, and have found something that helps… let me know!

 

Blog

Dad Jokes!

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During my time in hospital, and the months, years now of near isolation afterwards, my mum was the heart and head of my whole treatment. Keeping me safe, making sure I was comfortable and never alone, coordinating EVERYTHING that came with the cancer treatment, all while working, completing her MBA and keeping the house in order too (I still don’t know how she did it)… all those things. 


But if she was the heart, Dad was the soul of my cancer “battle”. He kept me smiling, organized surprises and events, just him being the larrikin, the easy going person he is made my life that much easier. 


The best thing he used to do though (and still does to this day) – was his jokes. 


But a joke is wasted, if not told. And though he delivers those jokes with the best of them (even jokes I’ve heard thousands of times, I don’t mind hearing again when he tells them)… he sends us these crackers that he “makes up on his own” all the time. So without further ado, I’ll throw in his best ones, so hopefully you too can laugh no matter what too. 

Facebook Banter 

Dad and I have a hate-hate relationship on Facebook. Whenever we get the chance, we take cheap shots on eachother. And I mean whenever… Once he hacked my Facebook and shared all the dirty pictures he could. Let’s just say I had a week of explaining to do… plus a few friendships tainted… 

But this one was gold. 

It was plastering day at med school the other week, and my tutorial happened to be on April Fool’s day. A GOLDEN opportunity to freak out my parents, right??? 

Wrong. Because as I posted this.. he snuck in with this gem. 

I’m not even mad… Mr Autar… take a bow. But I’d watch out for next time if I were you…
 I mean c’mon, his comment got more likes than my pic. I COULDA BEEN DYING GUYS!!!!!
 

Some of his “original jokes” that he kept saying to keep me smiling in the tough times. 

   


Why We Pay Upper Management the Big Bucks


A company, feeling it was time for a shakeup, hired a new CEO. The new boss was determined to rid the company of all slackers.

On a tour of the facilities, the CEO noticed a guy leaning against a wall and idly picking his teeth. The room was full of workers and he wanted to let them know that he meant business. He asked the guy,

“How much money do you make a week?”

A little surprised, the young man looked at him and said, “I make a little over $400 dollars a week, why?

The CEO said,”Wait right here.”

He walked back to his office, came back in two minutes, and handed the guy $1,600 in cash and said, “Here’s four weeks’ pay. Now GET OUT and don’t come back.”

Feeling pretty good about himself the CEO looked around the room and asked,

“Does anyone want to tell me what that goof-ball did here?”

From across the room a voice said,

“Sure – he was the Pizza delivery guy from Domino’s and was just waiting to collect the money!”


Marriage Training


Son: Dad, I want to get married. 

Father: First, tell me you’re sorry. 

Son: For what? 

Father: Say sorry. 

Son: But for what ? What did I do? 

Father: Just say sorry. 

Son: But…what have i done wrong ? 

Father: Say sorry! 

Son: WHY? 

Father: Say sorry!! 

Son: Please, just tell me why? 

Father: Say sorry!!! 

Son: OK, Dad…i’m sorry! 

Father: There ! You’re finished training. When you learn to say sorry for no reason at all, then you’re ready to get married!

Owning Door-Door salesmen. 

Witness… dad’s ingenious method guaranteed to own door-door salesmen, or trick or treaters if it’s that season (you will never get my chocolates).

Available to download here for free (cause I’m generous like that): https://docs.google.com/document/d/1BxHoxKeTbkebOKYK4B3fG9SCqN73pY20xqnsYvc1ZHU/edit?usp=sharing

 



Here comes the Bride


A young man excitedly tells his mother he’s fallen in love and that he is going to get married. 

He says, “Just for fun, Ma, I’m going to bring over 3 girls and you try and guess which one I’m going to marry.” 

The mother agrees. 

The next day, he brings three women into the house and sits them down on the couch and they chat for a while. He then says, “Okay Ma, guess which one I’m going to marry.” 

She immediately replies, “The one on the right.” 

“That’s amazing, Ma. You’re right. How did you know?” 

The mother replies, “I don’t like her.” 


Report Card


Father: Why did you get such a low score in that exam? 

Son: Absence. 

Father: You were absent on the day of the exam? 

Son: No but the boy who sits next to me was!


I feel sheepish for sharing this one… 


After a talking sheepdog gets all the sheep in the pen, he reports back to the farmer: “All 40 accounted for.” 

“But I only have 36 sheep,” says the farmer. 

“I know,” says the sheepdog. “But I rounded them up.”


Polly want a WHAT?”!?!!


A man went to a pet shop looking to buy a parrot. The shop had several parrots but one was priced much lower than the others. When the man asked why one was so much cheaper than the others, the pet shop owner assured the man that he did not want the cheaper one because it had a very foul mouth. 

“I’ve tried everything, but I can’t get him to stop cussing”, he explained. 

Eager to save some money, the man bought the parrot, sure he could teach the bird not to cuss. He too tried everything to stop the parrot’s foul mouth. 

Finally, in frustration, he put the bird in the freezer to cool off. After a few minutes, he opened the freezer to find the parrot with a totally changed attitude. 

“Please, I’ll NEVER cuss again! Please let me out! By the way, what did the chicken do?”


You can’t teach common sense


An uneducated father with his educated son went on a camping trip. They set up their tent and fell asleep. Some hours later, the father woke up his son. 

Father: Look up to the sky and tell me what you see. 

Son: I see millions of stars… 

Father: And what does that tell you? 

Son: Astronomically, it tells me that, there are millions of galaxies and planets out there! 

Father slaps the son hard on his hand and says, “Idiot, someone has stolen our tent!”

Trolling the bro

It’s just so fun to do! The poor soul has to suffer SO MUCH of our crap. This here below is why he has trust issues.


The ol’ rancher.


A rancher was minding his own business when an FBI agent came up up to him and said, “We got a tip that you may be growing illegal drugs on the premises. Do you mind if I take a look around?” 

The old rancher replied, “That’s fine, you shouldn’t go over there though.” As he pointed at one of his fields. 

The FBI agent snapped at him, “I’m am a federal agent! I can go wherever I want!” With that he pulled out his badge and shoved it into the ranchers face. 

The rancher shrugged this off and continued with his daily chores. About 15 minutes later he heard a loud scream from the field he had pointed out earlier. All of a sudden he could see the FBI agent sprinting towards him with a large bull on his heels. 

The rancher rushed to the fence and yelled, “HEY HEY!!”, tugging his shirt, “SHOW HIM YOUR BADGE!”

The glass is always half full.


This poor man is facing surgery on both his feet because of severe wounds. The doctor has warned him that he cannot tell how bad the damage is until he gets him in the operating room and he has prepared the man for the worst. 

After surgery, the man is slowly waking up and he sees the surgeon approaching his bed. The doc looks at him and says, “I have good news news and I have bad news – which would you like first?” 

The man nervously responds, “Give me the bad news first.” The doc says, “I had to take both your feet” 

“Oh my, what could possibly be the good news?” says the man. 

“The guy in the bed next to you wants to buy your slippers!” 




I’m gonna keep updating this with more laughs and videos of some stuff he’s done too! Not to mention the post with the dirtier jokes he’s shared with me in another post soon…
So make sure you subscribe here, like Musings of a Med Student Patient on Facebook, check out my YouTube and all the other funny posts on this blog (look under the “Humour in Hospital” section) and hopefully, dad can keep you guys smiling too =] 


It isn’t always easy, but you can always find something to smile about during your toughest times. All you need, at times, is a little push to remind you of that. How I used my mind to stay as healthy, hearty, and, most importantly, happy during my cancer journey. And still do to this day. 



Dad, in any photo. Can you figure out which one is dad?