Nikhil Autar

Tag: leukemia

  • Bone Marrow Transplants – The ENTIRE Process. How They Work. A Patient Guide and Story.

    Bone Marrow Transplants – The ENTIRE Process. How They Work. A Patient Guide and Story.

    Bone Marrow Transplants are scary. And they’re a unique procedure whose impacts can last longer than many regular organ transplants. But they also save lives. I’ve had 2 myself. Both were allogeneic transplants, the focus of this blog post, which is where you receive your cells from a donor. I’m a medical student and tumor vaccine researcher, but I wrote this out to outline the process for a fellow patient recently – so it’s in plain English – and it’s also more patient focused. I found, personally, that a fellow patients’ words just stuck more. So I thought I’d share it with you. This isn’t medical advice, and every patient is different – so ASK YOUR DOCTORS ABOUT YOU! But it’s hopefully a mixture of reliable information + experience. I hope it helps. Feel free to reach out (there’s a contact button on the website – or messsage me on my Facebook page where I’m most active – or Instagram).

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    Bone Marrow Transplants

    The bone marrow transplant procedure, in a nutshell, is basically getting someone else’s blood stem cells (haematopoiec stem cells is the technical name), located in their marrow, and infusing it into you, so it settles. They aim to get someone else’s immune cells in you, to kill off your cancer (your immune cells are made by your blood stem cells). And the major side effect, other than the dangerous infections you can get during the procedure and in the first 30 days due to, largely, chemo, is graft versus host disease, which can last a long time in others (but in small doses, is actually a good sign the process is working).

    How it works for the donor – it’s taken peripherally from the arm, after getting a medicine which makes those stem cells enter your circulating blood for a few weeks (click here to learn about that).

    On the recipient’s end, you receive it through an infusion into your veins, in most all cases. It eventually finds it way into your marrow and starts producing your donor’s blood cells (including white, immune cells), after a few weeks (it took 3 weeks for mine to engraft on both occasions, but it can vary).

     

     

    The idea is, though you and your donor are matched as well as you can be – there will always be slight differences between you and them, which makes them recognise cancerous cells and kill them off, where your immune system may have lost the ability to do. This is a good thing in that it’s how the BMT or SCT (stem cell transplant) is supposed to work. But it also is the cause of the major side effect, graft versus host disease, where your donor’s cells attack your own organs. I’ll get to that later, here’s how it all goes though.

     

    Prior to the transplant, you receive workup of some kind – often they want to ensure your underlying disease is under control. If it’s a blood cancer, often that will involve chemotherapy. Once they have the disease and any underlying conditions mostly under control, and they find a match, and coordinate timings (usually, you want to get the donor’s cells into you as soon as it’s taken from them), they begin the workup to the actual stem cell transplant process.

     

    Usually, a week or so before, they’ll begin immunosuppressive regimens and chemotherapy that are designed to kill off your current immune cells. In younger patients, they may also offer total body irradiation, which is a high dose of radiation given to your entire body (in younger people, marrow can be produced all over the body, so all areas are targeted, though they will provide shielding to your brain and lungs, in most cases). The idea is to kill off your old bone marrow’s cells and replace them with your donors’.

     

    I won’t lie, the BMT process and chemotherapy is tough. But it is lifesaving. Definitely listen to your doctors!

     

    During the next few weeks, like many chemos, you will have a lot of your immune cells and your blood cells obliterated. So you’ll be very susceptible to infections. It is very important to do everything you can to avoid infections in this time, from limiting visitors (especially sick ones), to cleaning and bathing regularly (even when you won’t feel like it) and following your doctors’/nurses’ orders. You also may experience other side effects such as nausea, gut pain (from your stomach lining cells dying off), fatigue and general unwellness. There are many chemotherapy specific side effects too that may occur, and you may also get other side effects – eg. with TBI (total body irradiation), you often get mucositis – inflammation of your mouth and throat – which can be extremely painful. I’ve personally experienced this myself and highly recommend you follow doctors’ suggestions and get ENG tubes if they think it’s appropriate and helpful, and getting pain teams to come in and help too. Having said that – my second transplant was a ‘reduced intensity chemotherapy’ regimen. I only had nausea and didn’t get an infection once, and it went quite smoothly compared to the first. Everyone’s different, every regime is different, and even in one person, at different time points, you can react differently.

    Other things they may do in your workup/the month before your transplant, is check your heart, and lungs, and, if you’re in that age category, your fertility. They’ll put a line in just before they begin treatment in hospital, this may be in your arms, or via ports they put into your neck. During the transplant, and the immediate transplant workup, they’ll watch over you, do bloods regularly, get scans when required, and treat things like infections. Infections are often the most dangerous thing you may face, but they’ll be sure to give you antibiotics, and other treatments, as required during this time frame.

    This is the TBI – total body irradiation process. This is usually done in younger patients, as they are more likely to have marrow that persists in other bones of your body (adults often only have it in their sternum and hip bones). Hence why they shoot radiation at your entire body (left of this photo is a machine which does this). The rice bags keep you still and provide some protection to important organs like your brain and lungs. And they keep you still. It lasted 30 minutes, and I had 5 sessions over a week at a special clinic the week before my transplant). Straight after you may get a burning sensation in the skin (this is resolved by creame in most cases). The other common side effect is mucositis, a sore throat, which can be very painful. So listen to your doctors if they recommend a feeding tube! I learned that the hard way!

     

     

    At some point, often 3 – 4 weeks after “Day 0,” where they infuse you with your donor’s cells, you’ll ‘engraft’ and have your donors’ cells start making cells in your blood. They’ll be monitoring for this. After this, a good number of people get acute graft versus host disease, which can affect any of your organs, and can be pretty severe. This occurs in the first 90 days usually, and can affect any of your organs – from your skin, to eyes, to liver, to gut. I personally had bad skin and liver and gut GVHD (in my first transplant, I had skin and liver aGVHD, and in the second, liver and gut aGVHD). Not everyone gets GVHD. It can be a good sign that you’re getting the ‘graft versus disease’ effect too (where your donor’s cells kill off/stop your cancer cells from returning), but too much GVHD can be bad too. Your doctors will treat you after you engraft with some medicines that suppress your immune system – often cyclosporine, but different doctors/patients use different treatments. If GVHD manifests and gets severe, they may add more or increase your dose. Or they may reduce them over time.

     

    You’re still not out of the woods after this time frame. You can get infections, still. And with GVHD – days can be critical when it comes to your outcomes, so make sure you tell them of anything you may experience. With different organs, you may experience different signs. Eg – with the skin, you may get rashes or feel like your skin is burning. With the gut, you may get diarrhoea, sometimes constipation. With the eyes, you may get burning or find it difficult to open your eyes (which may be due to skin GVHD affecting the skin around your eyes). It varies from person to person. It’s VERY important you see your doctors if something happens. But sometimes, you won’t feel anything. With my liver graft versus host, I didn’t feel a thing, but had very very high liver enzyme tests.

    I couldn’t find a clean, clear photo of my skin, so sorry for the captions. But this is chronic skin GVHD – I have quite severe chronic GVHD and it’s not too bad, other than the looks (I don’t mind the looks though – this is how I dealt with the social anxiety that comes to many post transplant, due to the change in looks). Acute skin GVHD can be more red and flared, and may occur anywhere. It may burn or itch. I know it’s hard, but try not to itch! But right now, as someone with chronic graft versus host disease, I can’t feel it, it isn’t painful, but it may make my skin less elastic, and does impede my joints a little bit. But I’m largely OK now!

     

    Usually, they’ll tell you to come into hospital as soon as possible if you get a fever or infection symptoms of any kind. With COVID-19 going on right now, clarify with your doctors if or when to come in. Many hospitals, including mine, will give you a card to get you into ED faster. Even after the pandemic ends (which may not be for years officially), it may be wise to wear a mask and avoid crowded areas too.

    Depending on your donor and your status, you may also get exposed to viruses that may put your graft (your transplanted cells) at risk. Your doctor will likely have you on prophylactic, preventative, antivirals, antibacterials, and maybe antivirals too to prevent this. And they’ll likely check your levels of various medicines, and monitor for these viruses too. This is why it’s really important to see your doctors and get your blood tests as much as they want you to. Hopefully, this will go from weekly appointments to fortnightly, to monthly, to 3 monthly, to yearly. And then comes long term monitoring.

     

    You also generally feel tired. I did after both transplants for months. Some of the medications you may be put on have annoying or frustrating side effects – eg. prednisone is a steroid medication (not the muscle building type unfortunately), which can make you angry, make it hard to sleep, and make you gain weight. But it’s also lifesaving. It’s important to keep in touch with your doctors to monitor this.

    The way cancer changed me used to really impact my mental health. To the point where, even though it was harmful for my health, I didn’t want to go out because of how it affected my looks. This is me years afterwards, but straight after chemo, on 100mg of prednisone, I had the classic “chipmunk face.” But I got over that after a while. This is how. I hope it helps those of you who may suffer from this out too. 

     

    After 3 months, you may also develop chronic graft versus host disease (cGVHD), which may manifest all over your body, and may get severe too. it’s important, once you get signs of anything weird, to tell your doctors about this so they can treat it, again. And treatment may last longer or be chronic, as the name implies. I still have some, 8 years out. But again, everyone’s different in this. I’ll make a post about this later – but there are many organs it can impact, from your skin, to eyes, to lungs and in rare cases, even heart. It’s important to get on top of this early. But the good news is, in many patients, it either ‘fizzles out’ or ‘plateuas.’ But without treatment, it can worsen, even after you’ve got it under control. So stay connected to your doctors and listen to their advice!

     

    That’s the transplant process, in summary. I know it’s a lot of information. But the main thing, is it a marathon. But it is also curative – it was one of the first curative options we had for any cancer. Though it can be dangerous, it has a good chance of fixing many diseases. Your doctors wouldn’t be doing this to you if they didn’t think it could help.

     

    I hope it makes sense. Let me know if you have any more questions. And sign up, do email me at info at nikhilautar dot (com) with any questions, and stay in touch!

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  • 3 FEMALE Medical Students/Doctors Shave Heads for a Cure!

    Last post:                                    My Story:                                        Next One:

    Three good friends of mine are doing something most girls can’t even imagine. They’re shaving their hair for the leukemia foundation’s #shaveforacure movement.

    They’re all budding doctors like me. In fact, as this was written a few years ago, THEY’RE ALL DOCTORS NOW (I couldn’t be prouder)
    And
    yes, you read right.
    They ARE ALL GIRLS!
    These girls are sacrificing a lot. You may think that as a guy, I can’t relate. But I do know first hand how hard losing your looks can affect someone, especially their self confidence.
    After multiple rounds of chemotherapy, and 2 bone marrow transplants I started hating how I looked, how I felt and the fact I wasn’t normal anymore.
    But I managed to get past that. I saw another way of looking at things, and have become the happiest person I can because of it.
    I no longer have to rely on my looks, my clothes or my
    achievements to be happy in life.
    And I thought, what better way to help, and thank them than to make them become the most confident happy version of themselves. And I hope this message, that I sent to all three of them, helps you too.
    You can help them along in their cause by sending them messages of support and helping them reach their goals by clicking their links below. Their stories, and the reasons why they’re doing this are all very touching and makes me proud to call them my friends. 
    This post was written years ago, so I don’t have links to their fundraising pages anymore… but you can support a friend of mine who’s going through chemo at 15, who’s recently lost her hair, but still manages to smile in the face of all this here! Here’s a picture of 2 of the 3 post shave! 
    And below, is the message I gave to them to pump them up and show them how all of this is an opportunity to grow too.

    Losing your hair is an opportunity.

    My message to these girls:

    “When I found out I had cancer, I was down in the dumps. After a while of that though, I took a step back, looked at what I was doing and resolved to see everything that had happened and was going to happen in the most positive way possible – to make sure I’d stay as happy, and healthy, going forward with my treatment.
     
    When I got told I had chemotherapy in the next few days, it was hard for me to see anything but pain and angst in my future – not only for fear of physical pain, but in the damage to my emotions and looks too. But after a while, I again took a step back and decided to look at it another way. 
    Instead of seeing my chemo as something that’d bring pain, bad looks and possible death, I decided to look at it as what it was.
     
    THE MEDICINE THAT WOULD MAKE ME BETTER.

    There’s a huge difference between the two. The difference
    between resigning yourself to death and going in fighting, with a smile on your
    face.
     
    Well, you guys don’t have to face the whole death thing like I did haha.
     
    But you will lose your looks, and, though I was more beautiful than all of you put together and thus had more to lose (obvious exaggeration there), you guys may find it harder to deal with than me.
     
    I turned that self doubt into something that’s made me so supremely self confident. And I’m gonna show you how you can do that too.
     
    When I came out of hospital I was losing hair, on medications which made me look fat, changed my skin and deformed me to looking like someone else, I started doubting myself, more than any teenage shyness/social anxiety ever could.
     
    I now see, looking back, that I was stopping myself from doing what I wanted, from being happy. And I was even endangering my health because of that. I stopped going out, stopped exercising, went out of my way to stay inside all because of what people may have been thinking about my looks. I didn’t even do that consciously. I wasn’t always depressed about how I looked, I was using my health and bad looks as an excuse to not want to do anything.
     
    But after a while of this, again I took a step back and looked at what I was doing. And I resolved to look at life another, most constructive way. What I resolved to do was simple. I told myself not to worry about what people MAY have been thinking about me and instead worry about how I could make myself, and those I cared about happy.
     
    Me before and after chemo and treatment.
     
    Today when I walk down the street, even with my skin the way it is, hair all weird, fat deposited in weird places all around my body due to Cushing’s disease – Even though I don’t look even a tenth of how good I had before all of this all – I can smile and laugh at everyone and everything on the way. Here’s how I do this in full detail.
     
    Now for you guys, the shave coming may seem hard and scary. But I know you guys can do what I did.
     
    Instead of dreading the day you cut your hair, look at it as an opportunity.
    Not only will you gain first hand experience of what it’s like to be a patient, which will help you relate and help more people in your careers as awesome doctors, you will also become the most confident, happy version of yourself in the process.
     
    There’s a huge difference between going into it scared and coming out afraid to look in the mirror, and looking at it as something that will make you the strongest, most happy person you can be.
     
    And be sure that by the time you guys do the shave, making thousands in donations along the way, I’ll make sure each and every one of you will be sitting on that chair with a smile on your face.”
    I hope this message inspires everyone reading this to look at their challenges in life as an opportunity – because that’s how you can be the happiest, most successful version of yourselves. 
     
    For me – I looked at my chemotherapy as what it was, a medicine, rather than a death sentence.
    For these girls – I’ve inspired them to see the World’s Greatest Shave as something that will inspire and build their self-confidence, rather than something that’ll make them sweat at night.

    For others going through a similar experience –> I hope this helps you to be as happy and positive going forward in your journey. If you’re a cancer survivor who’s also about to lose your hair, or go through pain, really take this message to heart. Because going into it all, looking at it as an opportunity, rather than something you can’t lose will not only make it bearable – it’ll make you STRONGER!

    For everyone else reading this:
    –> Next time you have a job interview, look at it as a chance to showcase your prowess and skills, something to gain rather than something you can’t blow.
    –> Next time you’re taking that final shot in a game, look at it as a chance to help your team win, or a chance to show off your hard work rather than a way to fail yet again.
    –> Next time you’re sitting an exam you aren’t confident about, walk in with a smile on your face, looking to pick up every mark possible rather than panicking, fretting and forgetting half the things in the exam room.
     
    If you can take a step back, and see the positive way of looking at things, you’ll be the happiest person you can be.
     
    Because everything in life is an opportunity.
    And once you see that, only YOU can stop yourself from
    grabbing them.
     
    These girls doing the shave have all messaged me back, and I’ve been surprised by their bravery, their determination, and mostly, by the fact that they all are sincerely doing their best to raise money for a better tomorrow for millions suffering with blood cancers everyday.

    They’re still scared of what’s to come, but this message has seriously helped them to see another way of looking at things and hopefully, when it comes time to shave, they’ll be happy for what they’ve done.

     

    But they do need support. Please, do send them a message by clicking the links below. It only takes a second of your time, but it’ll help these girls on their quest to help others. 
    And if you can spare some change – you can donate to them too on that page.
    But here are pictures of these amazing young women, who are all AMAZING doctors now!
    Aimee and Nadeen

                                                                           Lana