IamA 22 year old that was diagnosed with a cancer that only affects 100 children per year. This month I will be 5 years cancer free AMA!

This is actually the same cancer I had when I was 4 years old, except in my left hip bone, I'm one of the only people in the world to have that operation. I'm in Canada, as well. It's really rare to see someone on here with a Ewing's Cell Sarcoma. What do you feel the biggest struggle has been after? I had some serious rehabilitation to do, but I've recovered quite well and am actually into bodybuilding now. Congratulations on being 5 years cancer free! All the best!

Proof: Here, here, and (warning, surgery) here.

Thanks a lot, and congrats to you aswell. Biggest struggle? Definitely dealing with the lack of mobility and range of motion in my arm (after surgery). I still rehab it and work out, but it is certainly not the same. I miss playing sports competitively; I can casually play some, but its not the same.

You're cancer free and good looking! Will you go out with me?

Where were you thinking??

Very nice story and post. I was dating a girl in High School who randomly found out she had Ewing's sarcoma when she was 17. Very rare cancer as you said, but there were 3 cases that year in our area (South Bay Area) and they began to think it was more than coincidence (eg something in the water).

How did your friends/classmates respond? Did you lose touch with many of them?

Thanks for sharing. No actually, everyone around me really came together to support me. All of this was facilitated by teachers at my high school, coaches of teams I played for, and the rest by my friends. I was quite fortunate to have so many people behind me. As for how they responded, I don't really know since I was pulled out of school so fast. Some of them didn't know what to say and others offered encouragement. It wasn't awkward or anything - I just think that many people were unsure how to react in a situation like that (when someone close to you is diagnosed with a life-threatening illness). That being said, I still am in touch with many of my friends from high school, which I'm very grateful for.

What is the single hardest part about having cancer?

Definitely the after effects of the treatment. The drugs are really tough on the body and to give you a visual example, my hair never grew back because of the chemo after effects. For my situation though, the worst part was the surgery. It was necessary to have it done to give me the best chance of living a long life, but I can't really do too much with my left arm anymore. I can't lift it above my head, brush my teeth with it, or even grab a glass from the cupboard. It sucks, but I'm alive so I'm grateful for that.

How did it feel when the doctor told you? And how did your parents react at first?

To tell you the truth, I was under the impression that it was misdiagnosed. After my initial scans the radiologist concluded that it was either Osteosarcoma (the cancer that Terry Fox had), Ewing's sarcoma, or Osteomyelitis (a bone infection). I was extremely healthy, didn't drink, didn't smoke and was in good shape - so it was really hard for me to rationalize that I had actually developed cancer. Back to your question though, my parents found out via the phone while I was at a friends house. When I was picked up later that day it was only my Dad in the car since my mother was hysterical. My grandfather passed away from lung and bone cancer earlier that December so everything did not seem to be working in my family's favour. He broke the news to me and I didn't really process it. I didn't cry, wasn't upset, I just figured that I would be out of commission for a year and then once my treatment was finished I would be back to normal life again. I'll admit that after about a month everything started to sink in. As soon as I started losing parts of me (hair, bone, physique) it became real. I wasn't sad per say, I was more frustrated - but I knew that asking the "why me?" question was not going to make anything better. I had an extremely supportive network that I fed off of during all my treatments, and that allowed me to persevere through some of the rough times. My parents did a good job at hiding their frustration and sadness. The beginning was obviously the worst though. My mom cried a lot, and rightly so. She had no control over what was going to happen to me, and neither did I. But I must say, she stood by my side every step of the way. I'll never forget her insisting to stay in an uncomfortable hospital chair for days on end. I don't really know what I would have done though if she wasn't constantly by my side. She was amazing.

when you were diagnosed, did you create a bucket list of things you wanted to do? have you done anything on your bucket list?

This is a great question. The way I looked at my diagnosis was that I was going to be out of commission for a year, and then I would be back to normal. I didn't create a bucket list, but I definitely thought about what I wanted to do after my treatment. I always wanted to get a good education, and I also wanted to travel (unfortunately I haven't really done that yet... but I hope to this summer). The last thing I was set on doing was to play competitive baseball again. Unfortunately due to my surgery, I couldn't play shortstop anymore. I lost a lot coordination with my catching arm - but I did eventually play again (as a Pitcher) and I did get a couple Division 2/Community College scholarship offers. I didn't accept any though because I wanted to be closer to home and knew I needed to focus on my academics more so than my baseball career.

Grats on the 6 pack! [hangs head in shame]

I suspect you'll do well in your career - the word 'quit' is not likely even in your vocab.

What career are you aiming for?

I'm studying engineering but keeping my options open. I've worked in Finance, and also at an Engineering firm - but where I will settle in, I'm not sure yet. Thanks for the kind words!

Hey! So glad to hear your recovery story. I wish you nothing but the best in the future.

I'm so curious about cancer in general. I guess my question is what were your first symptoms? How did you know it was something more than just an awful flu? Was it one day to the next it did you feel your health declining?

Thanks... And again: love hearing about people like you who kicked cancer's ass

No problem. I originally linked my story (which is in the form of a Tilt campaign) and I talked about it a little there - but it seems to have been taken down. This is my first time really using reddit and I didn't read through all the etiquette. Anyways, my only symptom was pain. And this was the worst pain I have ever felt in my entire life. The only way to describe it is this: imagine that your bone is like an overinflated balloon and with every heartbeat that balloon gets another breath of air (aka becomes closer and closer to popping). There were times where I thought the bone in my arm was going to explode because the pressure was too intense. I awoke to these symptoms at 4am and went to the doctor right away.

What is the chance of reoccurance of your cancer?

I'm not too sure. After the surgery to remove most of my left humerus, they dissected it to see how effective the chemotherapy was. This ranges from case to case, but if I remember correctly the chemotherapy killed about 99% of the cancerous cells in my bone. This was way above average for Ewing's sarcoma treatments.

Did you have the 22:11 chromosome transposition?

I'm unsure. The doctors didn't tell me all the details unless I asked them, and most of my questions were directed toward the surgery and the chemotherapy drugs. Definitely something that I should inquire about the next time I visit the hospital though.

Did you find it helped not knowing all of the information? I'm battling germ cell cancer right now and have nodes on my lungs but I still haven't looked at any of the xrays or ct scans just because I'd rather not think about it. It's not that I'm not willing to accept it, but treatment is going to be treatment whether I see the full extent of it or not, no reason freaking myself out more.

I was the kind of guy that wanted to know everything that was going to happen to me. When it came to drugs, surgery, and life after cancer I wanted to know what to expect. I even looked up videos of my surgery before it happened (my mom thought I was crazy). For those that aren't like me though, I would say it's not really necessary to know everything about the treatment because for the most part you cannot alter anything. Just do what is going to make you feel the most comfortable and always try to be positive. Again, everyone is different, and this is just how I dealt with my battles.

Yay Alex!!! 5 years is a really big deal!!! This year is my 10 years cancer-free :D. For my 5 years, I went bungee-jumping to celebrate. So I wondered, in addition to your awesome fundraising, do you have plans to celebrate in other ways?

Congrats, thats amazing!!! Yes, when I finished chemo I went to Hawaii the following Christmas. Now my family is planning another trip there for this upcoming Christmas to celebrate - which should be awesome (I'm going zip-lining).

What have you done to stay positive up to now? Congrats on your remission. I lost my mother to breast cancer when I was young and always took interest in what make people with cancer tick.

Thanks, really appreciate the kind words, and I'm truly sorry to hear about your loss. I've been a pretty driven guy my whole life. I've faced a lot of adversity (not just cancer), and I learned over time that nothing ever changed if I let sorrow and frustration get the better of me. Right now I'm in my 4/5 year at university. I keep busy with friends, and I also work hard academically. I don't think there is one cookie cutter way to stay positive and driven, but I have role models and people I look up to who constantly keep me upbeat and happy. I won't lie to you, there are days where everyone feels down and sad - and I experience them too. But the biggest thing for me is to set goals and just always chip away at them. The best things never happen immediately - and I'm invested in the long term route to success and happiness.

Oh my god can we be cancer buddies? I had an osteosarcoma and my proximal humerus was replaced with a prosthesis too, it was my right arm though :D I am about a year cancer free and just got my port removed, and I am still working on my movement, did/do you do any kind of physiotherapy? Also, what did you wish for from the foundation? :)

I'll be your osteosarcoma buddy, lol. About 5 months free now

That's awesome, congratulations! Drop me a line if you ever want to speak about anything.

Of course, drop me a line in my inbox. As for rehab, I basically work on holding my arm up for as long as I can, and I do rotator cuff exercises with little to no weight. It has gotten a lot stronger but has also taken years to get to where it is. Another big thing was that my surgery did not remove a lot of the muscle connected to my humerus, other than the front part of my deltoid. I pushed for a custom prosthesis (by Stryker I believe), and it included "holes" where my muscles could be sutured into the prosthetic to simulate as much natural connection as possible. It's definitely not the same, and it never will be, but its manageable. Congrats on getting the port out! I remember that being really weird for a couple weeks since I was so used to having this hard bump implanted under my skin. As for my wish, I went to Hawaii with my family. It was amazing - I'm actually going back there this Christmas.

Did someone say cancer bros? I also had osteosarcoma and had my left humerus replaced with a titanium prosthesis. I've been 10 years cancer free and am now 27! So there are many good years ahead for both of you! The only thing still affecting me is they took most of my left deltoid and some of the bicep so my left arm movement is a fraction of what it should be. And I guess sometimes I still get embarrassed about the way it looks. But all that is easy to overcome! Keep fighting the good fight boys.

Oh and my wish was Hawaii with my family too! Awesome times.

Wow, lots of similarities here. Thanks for sharing I really appreciated this post. All the best!

I'm glad you're doing well! i was wondering if your experience with cancer and the treatment changed your Outlook on life and your opinion on certain things?

Thanks! Cancer definitely changed my outlook on life. This is mainly because it caused me to "grow up". I feel like I probably skipped the adolescent "don't think just do" phase due to the timing of my treatment. I now set goals for myself routinely and I do my best to stay on track with them. Another thing that changed my outlook was accepting the fact that I could legitimately die from the disease, and that was quite scary. My personal hardship helped me to recognize that whether it be illness, accident, or some other type of issue, mostly everyone goes through some sort of personal struggle. You may not be able to see it from the outside, but everyone goes through some sort of hardship and challenge. I'm always open to that now and I just try to treat people how I would like to be treated, because you don't always know what someone is going through.

Hey man. I'm glad you are doing better now and living a healthy positive life. My 6 year old niece has been diagnosed with Ewings four months ago. She was also suspected to have osteosarcoma, osteomyelitis and ewing sarcoma and finally it was ewing they confirmed. The doctors here in india are following the standard international protocol to cure her. Can i ask how long did your chemotherapy lasted for? Btw she has this on her right knee and they put her on for a year and a half duration of chemo.

My chemotherapy in total lasted for 8 months. My cycles were ~10 days in the hospital and ~6 days out. Most of the drugs took a couple hours to deliver, other than Doxorubicin, which took 48 hours at a drip pace. Timing changed during the latter half of my treatment though since my immune system became quite weak. When I was an inpatient, I wouldn't be allowed to leave if I got sick at the end of the cycle. Conversely, once I did leave the hospital, I wouldn't be allowed back to start another round until my immune system had recovered. To boost my white blood cells and T cells I was given a drug called neupogen - this drug was quite expensive and is not covered fully by many drug plans in Canada. Final breakdown though: I was June - November (Chemotherapy), 2-3 week break to recover from surgery, and then December - March (Chemotherapy).

My ex-husband had Ewing's in his femur when he was a kid, was the first person in Australia (or the world? Memory fuzzy) to keep his leg. Granted, the leg isn't all that crash hot, but he helped add to the knowledge base and still has two legs.

Well done to you for surviving, I hope you raise lots!

Thank you! Give my best to your husband.

So are you a Cubs fan then?

Is THIS the year?

For me - Yes, on March 9, 2015. For the Cubs.. I don't want to jinx it.

Hey there, congrats on beating a very tough cancer! Can you go into more detail about the treatment you received? What options were you presented, and how did you decide which path to take? From the x-ray, looks like you had some pretty intense surgery. What was that like, and how did you rehab?

Thanks! After my official diagnosis I was presented two options in terms of chemotherapy. One was a regime that had been used in the past (approximately the last 2 years I believe) which had shown above average results for most of the cases, and the other was to opt into a lottery system to try a new "experimental" treatment. Choosing was quite simple given that my cancer had not metastasized elsewhere in my body. It also helped that the oncologists did not see any need to try a radically different type of chemotherapy to treat my cancer. I ended up choosing the previously used treatment plan, and if I remember correctly the drugs were Doxorubicin, Cyclophosphamide, Ifosfamide and Etoposide. Since my treatment was pretty aggressive and I would be getting many needles, I had a port surgically implanted. A port is basically an avenue for nurses to establish a channel into the bloodstream. It's a plastic rubber device that was placed under my collarbone and was connected to one of my main veins going into my heart. All the intravenous fluids (including the drugs) were administered mainly through my port. This was also nice because you could freeze the area of the skin just above where the port was, so when my port needed to be tapped I would just take an ice cube to numb the skin and then let the nurse put the needle into the port. My plan was structured so that I spent roughly 10 days (as long as I was healthy enough to leave) in the hospital, and about 6 days at home resting. In terms of the drugs, I couldn't tell you which one was the worst for my body, but Doxorubicin definitely made me feel the worst. It was a 48 hour drip and required me to basically be lying down most of the time. I needed 14 of these treatments. After seven of them I had my surgery. It was a limb sparing surgery and a wide resection of my proximal humerus. They removed about 18 cm of bone and replaced it with a stainless steel prosthetic. The arm is truly not the same, it looks different, feels different, but over time I've gotten used to it. All of the ligaments and tendons were removed because the implant had no where for them to be sutured back on, so I only have my main muscles hooked in. I am missing most of my front deltoid due to the wide resection, but the side and posterior parts are still intact. My pectoral muscle and short head bicep have been connected to the implant and my long head bicep is connected to my collarbone I believe. All in all the functionality and range of motion is quite poor. I am able to get my arm above my head if I swing it, but I cannot hold it there for long. According to my surgeon, she has never seen range of motion like mine after having that kind of surgery, so I suppose thats a positive. As for rehab, it mainly consisted of some adapted rotator cuff exercises, and then assisted holds where my arm would be held out parallel to the floor to my front and side. It has gotten to a point where I am able to do pushups and chin ups, but I cannot really do presses or things that require my arm to be above my head. It takes much longer to build muscle I think, but it has definitely come a long way since 2010.

Hey! My friend just got diagnosed with Leukemia. What can i do to make him feel better? What did your friends do for you?

one of OPs best friend here (helped him out with figuring out reddit so I've been watching this post) myself and 2 other buddies practically lived at Alex's house while he was going through hospital trips. We would finish school and go to his house. Then in the summer we would practically live at his house for weeks at a time (so glad his parent's didn't get sick of us haha I know I personally ate all their food). We basically sat and played halo together. For hours. We ended up getting pretty decent but it was really just to support him and keep his mind off of it. Just do what you can and respect his families wishes.

Yeah I will verify this. This is actually my first time really using reddit, and the above poster was at my house all the time. I don't think there is one recipe to making people feel better since everyone is affected differently (emotionally and physically) by the treatment. But definitely the best place to start is to just keep him/her busy. I was constantly doing things with my friends, and it wasn't a burden for them to be hanging out with me. They skipped parties, events, and tons of other social gatherings just to hangout when I was on my week off and that made a world of difference for me. I played a lot of Halo with them because it was the only thing I could really do to channel my competitiveness (I was involved in a lot of competitive sports prior to my diagnosis). I remember counting down the hours every cycle until I was allowed to leave. I even took this drug called Mesna orally (it is usually delivered through the IV), which was the grossest thing you could ever taste, just to leave during the day for about 8 hours.

Unfortunatly he is in a clinic kinda far away most of the time. We played almost every day together. He has a laptop that can run games pretty well but he almost everytime says "Sorry, i`m too tired" if i invite him to play.

But i would totally do what you did for him.

just skype and talk with him when you can, he'll appreciate it

Exactly ^

Congrats on your remission. I lost my friend to osteosarcoma which started in her shoulder and spread to her lungs before they found it. She actually had her humerus and shoulder joint replaced with a metal rod too.

Did you find that while some friends remained present through your treatment, others didn't tend to stick around for some reason?

Sorry to hear about your loss. For the most part I had a core of about 4 friends that were always with me when I was not getting chemotherapy. We mostly played video games together and watched movies since I wasn't allowed to leave the house. My other friends were there, but they weren't with me 24/7. This is understandable because I was really limited by what I could do during my time out of the hospital. So I wouldn't say that people avoided me or didn't stick by me - they just weren't around me for 24 hours a day. Most of them dropped off food, games, movies etc to keep me busy.

My girl friend is 24 and just finished radiation for her Sarnovial sarcoma (spelling?). I'm going to show her this because she is freaked out that her life is over and she can't fulfill her dreams. Seeing someone younger than her that is doing well will hp her out.

Is it Synovial Sarcoma? And yes please do. Life is certainly not over, there's a lot left that I still want and need to do - and I am sure that can apply to her too.

I'm super duper late to this and I don't exspect a try but it's worth a response. My brother is 22 and a year ago he was diagnosed with Ewing Sarcoma in his left thigh, the tumor and his left pelvis was removed and replaced. He's still going through intestine chemotherapy; however, recently he's been experiencing sever manic states and psycosis. During your treatment would you ever go through manic states or states of psycosis?

Edit: word

No I didn't. I went through some weird mood swings for sure, but didn't experience that. I wish the best for your brother.

Alex, congrats on hitting the 5 year mark. Our son Aidan was diagnosed with Ewing's when he was 9. We are going for his 18 month scans later this month.

Here he is on his last chemo and the other night chilling with the dogs. http://imgur.com/KFUxZaq

Did the chemo or radiation affect your fertility? (This is something we were worried about with Aidan but he was too young to bank sperm prior to treatment)

When you found your tumor was is localized or had it spread at time of diagnosis?

I did end up banking sperm, but I am unsure how the chemotherapy affected my fertility. My tumor was localized, and honestly I was quite lucky - it was ~14 cm long inside my bone and usually it spreads after getting that big. I hope Aidan is doing well! He looks quite happy in that photo. Funny enough, I got a dog right when I finished treatment. He was amazing to have for the recovery process.

Yeah that's a big tumor to not have any mets. Aidan's was localized too and pretty small (around 2cm) but was inside his S2 vertebrae which made surgery unrealistic.

We feel very fortunate that he's done as well as he has.

I wish him all the best! Feel free to reach out if you have any other questions.

How did you find out you had it?

Really bad pain deep in my arm. I felt like my bone was going to burst.

I work in pediatric oncology in deep south texas i believe two of our kids have ewing's sarcoma.

Any advice on making them happy and making there hospital time less sucky? These kids are amazing and down right awesome! I just want to make sure I'm doing everything possible to make them feel better during Chemo.

How old are they? I used to play with a lot of the little kids in the hospital during my treatments (the rooms were two kids per room for the most part). I think games, tv, and just interacting with the kids for longer periods of time makes a huge difference. Most of my nurses would get in trouble for not going back to the front desk because we would be chatting for so long. They also made the younger kids laugh a lot. I think that really brings up a lot of patients spirits because it shows how invested you are in making them feel and get better.

Amazing story, congrats on the good health!

What were the financials like during treatment? Did insurance cover a majority?

Thanks! Everything was covered in my case, but one of the big reasons why was that my mother is a teacher and teachers' have an amazing drug plan. I was told that typically there is an application process to the government to get funding to cover the cost of the drugs (which in the end accumulate to be ~$400k I think). Some families around me at the time did end up having to pay some amount of money for the treatment - but I honestly don't remember how much it was. I do remember one drug in general that most parents complained about. It was called neupogen, and even with a standard Canadian drug plan it cost about $1600 each week as an outpatient. Some families required this drug for their child's survival (and I remember some kids being treated for two years). Not many of them could afford it, and in an effort to raise funds they were sponsored by various charities. Again, I was lucky, my mom's drug plan covered the whole price of this drug. When I finished my treatment I ended up donating all the leftover supply that I had.

6 years out here of Ewing's Sarcoma friend, and very happy for you to be such a good supporter of a great cause. Including some of my pictures. Hope you see this!!!!!

As to the questions:

1. How is your range of motion?
2. What was your chemotherapy regiment?
3. Do you hate when people call you brave and strong? EDIT: I realize this sounds bad, I personally hate it, was wondering if anyone else felt the same.

I could talk about this forever. Feel free to PM me :) Included are some xrays

Link 1 2

Thank you and congrats to you as well!. 1. Moving my arm backward (using my posterior deltoid) is pretty much normal. Moving it laterally I can only raise it about 70 degrees. Lifting it in front of my body, I can only get it up about 30 degrees. With momentum I can get it above my head, I just cannot hold it there. 2. The drug regimen was seven cycles (which was June - November), surgery, then another seven cycles (December - March). Drugs were Ifosfamide, Doxorubicin, Etoposide and Cyclophosphamide. 3. I don't hate it but describing myself as brave or strong wouldn't be my first descriptors. I was faced (like you) with a life or death situation and the natural instinct is to persevere through it, and thats just what I did. Now that I've moved past that part of my life, I want to help give strength to anyone suffering from a similar condition so that they too can muster the energy and will to get through whatever battle they may be fighting. Saw the xrays, it's super cool to be able to relate to someone who went through the same thing. What is your range of motion like?

My range of motion is very poor. My original allograft became infected, and it was replaced with full metal about a year ago. My humerus head is dislodged 90% of the time, so picture walking around with a separated shoulder all the time. I have no rotator cuff anymore. I had a similar regiment as you: doxirubicen, vincristine, cyclophosphamide, then 2 weeks later etoposide and ifosfamide. 16 cycles, 8 of each. Had radial nerve palsy after surgery and had a tendon transfer to fix that.(wrist and hand is about 85% range of motion). Ive never found someone else who had it in their humerus like I, I'm ecstatic to hear you're doing well. Maybe we can trade stories someday if you're okay with that. :)

Would love to. Thanks so much for sharing.

Congrats on being cancer free. My brother is 26 and he's been fighting synovial sarcoma (another rare type of cancer) for the past couple of years. He's had several surgeries, lost a kidney, and had several rounds of chemo and radiotherapy. Nothing has worked, but he recently got into a clinical trial at NIH, so here's hoping.

I've been trying to get him in touch with cancer patients and survivors his age. He just doesn't have the energy. Do you have any encouraging words that I could pass along to him? How did you endure the most difficult times? And I'm just curious - but what treatments did you have that ultimately led to you being cancer free?

Congrats again. I think it's wonderful you're giving back. All the best.

In the beginning I honestly didn't believe that I had cancer, and in the back of my mind I planted a seed telling myself I would be out of commission for a year, and then I would be fine. That being said, my parents really understood the magnitude of the situation at the beginning and they coined "NeverGiveUp" for me. That was something that was hammered into me from day one of treatment and I think that really helped. I'm sorry to hear about your brother, but just make sure that he knows to always keep fighting. It gets rough at times, and when he is going through a tough bout make sure that you and the family are there for him so he can leech off of the positivity surrounding him. I had a lot of support from family and friends and that made a world of difference. As for the treatments, it was just chemotherapy (consisting of Ifosfamide, Doxorubicin, Etoposide and Cyclophosphamide), and surgery. Please give my best to your brother and feel free to PM me privately if you or him would like someone to talk to.

Thanks for your response. I'll pass along your message to my bro. I'll be sure to PM you if need be. Thanks man.

You're very welcome.

Are you an atheist?

I think that life (and I speak from my own experience) has a weird way of levelling itself out with all the ups and downs. I want to believe that we somehow live on after our bodies die, but I also strongly believe in science and modern medicine. I'm not sure whether that classifies me as an atheist.

The deeper you look (beyond the comments of the pseudointellectuals on Reddit) you find that science and Christianity are not mutually exclusive. That said, I am still coming to terms with losing someone I loved very deeply to complications after a stem cell transplant, and I know what it's like when nothing makes sense. You strike me as a very likeable person. Congratulations on your 5 year anniversary.

Sorry to hear about your loss, my thoughts are with you - stay strong. I appreciate the kind words and thank you for reaching out.

You're a lucky man! Congratulations.

How does the partial humerus prosthetic affect your arm movement? Do you still play baseball?

I can only see a scar on your arm, and a transplant. Is that the only prosthetic you have, or were there more operation sites?

Hope you stay clean in the future, and good luck with your campaign!

I do. I missed this year's season due to some extracurriculars I was involved in and because of some rotator cuff strain (that I acquired playing over the summer). That being said, I plan to play in my final year (next year) and again this summer. The prosthetic really impairs most of my mobility in my shoulder joint. The best I can do for raising my arm is to "swing" it up. I cannot hold it out at all. I have one more scar on my chest from where my port was put in, its not that big (around 1.5 in). Thanks for the support!

Actually read the article, noticed our birthdays are a week apart!! Congrats on your being cancer-free, from a fellow Canadian and Taurus!! (I'm from Toronto! Jays for the win!!)

Have you continued your education? What did you/would you like or want to study? Do you plan on pursuing a career in healthcare after your experience?

Go Jays! I'm praying that they all stay healthy this year (and a fast recovery for Saunders). My high school education was delayed by a year, but after that I went to Queen's and originally started out in Life Sciences, then switched to Bio Medical Computing, and am now in Electrical Engineering. Lots of switches, I know. I'm quite interested in the wearable scene, and also medical imaging. I don't know where I am going career-wise yet. But those are two fields that I've definitely considered. I've taken a decent amount of Bio and Chem courses so the MCAT is also still on the table. Who knows where I will end up.

Hi there! Many congrats on being cancer free 5 years later. I had a childhood friend who died of Ewing's sarcoma about a month after her 18th birthday.

I wanted to ask you, how often do you have to go for checkups to make sure the cancer hasn't returned? Have you been told any signs you have to look out for?

Thanks! I'm also sorry to hear for your loss. Now that I am 5 years free, my checkups will be a little more infrequent (I think every 6-9 months). During the first 5 years they were almost every 3 months. Checkups included CT scan, Xray on my lungs and chest, and echocardiogram (because one of the chemo drugs damages the muscle tissue in your heart). I don't get MRIs anymore since the metal implant makes the image unreadable and there is little to no value in having it done. I haven't been told to watch for any signs, so I think the frequent scans are in place to do all the checking for me. I will have to get checkups for the rest of my life, and when I hit 10 years I think that the checkups move to around every 9-12 months.

Hey, I had this too in my right clavicle when I was 27. They just took it out so now I'm down a clavicle and I'm totally fine.

My question is what was the best part of having cancer?

Cancer was pretty horrible in many ways, but it also made me realize how lucky I am to be alive and living. I appreciate everything a lot more now, and notice all the little things. I also will be giving back and supporting these charities for the rest of my life, and I wouldn't have had that mission if it wasn't for cancer. I like to be able to help and talk with other survivors and patients. Support is huge when you have to deal with something of this magnitude and I'm looking to do anything I can to help others who have experienced something similar.

I have a few questions, forgive me if they have been answered before:

Were the tumor(s?) located in the bone or in tissue or both? Did you have any swelling (edema) in the arm prior to the diagnosis? Do you have any CT/MR images of the tumor? Did you take ifosfamide and/or doxorubicin? Do you have any of the pathology reports you can post?

I ask because my mother died rather quickly a few years back due to a unknown kind (not Ewing's) of soft tissue sarcoma in the exact same location as you (upper arm), she was put on on ifosfamide and doxorubicin but it had no effect.

I'm really sorry for your loss. My tumor was in my left proximal humerus, I think there was minor swelling - but not too much, and the tumor was contained to only the bone. I was on both Ifosfamide and Doxorubicin and also Etoposide + Cyclophosphamide. For me these drugs killed about 99% of the tumor, but I was told that it varies widely on a per case basis. I'll look for some of the reports and scans and post them if I can find them.

Thanks for the reply. Could you try to sum up your experience when undergoing this drug regimen? How did they make you feel? How long were you on them before you had surgery? Also did they remove any muscle or just the bone?

The drug regimen was seven cycles (which was June - November), surgery, then another seven cycles (December - March). The first seven were not too bad. I didn't throw up, I didn't get any canker sores in my throat or mouth (this is a typical side effect), and I didn't feel too horrible. Surgery was rough, they removed a small amount of my peck and most of my anterior deltoid. The second seven cycles were also quite rough. I needed transfusions often, I was really slow and lethargic, and just didn't want to do much. I threw up a little bit as well. Dealing with my arm in a sling for two months and the compounding effect of the drugs was the worst part of the treatment by a mile.

Sounds brutal. How was the psychological impact of having cancer? And how would you compare that stress to the physical discomfort and pain? What was worse?

For me, post-treatment was much tougher psychologically. It changed my body and perspective and it was tough accepting that I would never be able to do some things ever again (lift my arm, have my hair grow back, etc). The physical pain was there, but I've had a solid pain tolerance my whole life so I sort of knew how to deal with that when it was bad. Overall, the psychological impact was much worse than the pain, and also much tougher after treatment than while I was going through it.

Hey, congratulations on your 5 years, man. That is so huge. How did they know to look there for the cancer? Were there any symptoms or signs beforehand?

Thanks a lot. The only symptom I had was pain. I had mild discomfort during my workouts (specifically could not do chin ups - but I thought that it was just from trying to push myself too much) in the December prior to being diagnosed. Then the pain just blew up one morning and was unbearable. That's when I went to the doctor and got the diagnostic process started.

Have you ever had the opportunity (or would you take the opportunity) to reach out in person to kids currently fighting Ewing's sarcoma?

I have spoken to a few Ewing's sarcoma survivors but would love to connect with others and chat with them about battles they have fought or may be fighting. PM me!

Tea or coffee, and how do you prefer it?

I only started drinking coffee (black) when I got to university (and had to stay up late and get up early to get work done). Otherwise I'm going green tea with a teaspoon of natural honey - it's awesome.

Mann

Do you happen to play tf2?

I've played it, but only briefly and I don't play anymore.

I read an article about gangs in Africa that steal blood of cancer survivors to ward off the disease. How do you feel about this? Would it prevent you from visiting Africa?

I haven't read or done any research about this so my answer right now would be that I would probably visit.

What's your favorite salad dressing?

I don't know exact proportions, but one of my friend's mom's oil and vinegar dressing is incredible. Thats definitely my favourite.