IAma 19 year old 3 time cancer survivor with li-fraumeni syndrome. AMA!

Wow, it's really great to see people like you who take the time to talk about living with your condition so that you're not just a page in a textbook.

What was it like when you found out you had the condition and how old were you?

Well I'm assuming by condition you mean the li-fraumeni and that I didn't discover until I was 18 when I had a seizure to discover the brain tumor. The docs never knew of it sooner because it is common for osteosarcoma to reoccur in the lungs of patients which is why they didn't suspect it the 2nd time.

What do you like to do in your free time?

I'm usually either working now or at home relaxing on my Xbox one.

Destiny player?

Test played in beta mode but only for a day or two. Have to get it now for my new Xbox One I got for this last Christmas.

How bad did the chemo and radation hit you?

The first time I had cancer when I was 14 it hit me pretty hard. I didn't eat my entire first week of treatment because it made me to nauseous and I would just throw it all up. I ended up losing over 30 pounds putting me in ICU till I ate something. After a while though I got used to the treatment and was able to eat normally afterwards and with the other two tumors.

was your cancer three seprate types or did one just keep reocurring?

The first time and second time it was osteosarcoma in my right humorous and right lung. The third time it was anaplastic astrocytoma.

are you in remisson?

Have been now for 8 months.

Silly question, but don't they give you medication for major side effects? I know zofran is commonly prescribed to treat chemo-nausea.

I can't quite remember all the meds that I had to take but I do remember zofran because it helped me be able to keep food down. I also had to take meds for constipation caused as a side affect by other meds.

Hi,

Thanks for sharing your experience, just bumping on the previous comment regarding "radiation" : since I didn't know about li-fraumeni, I looked it up on wikipedia and they say that people with this syndrom should avoid radiations exposure since they are very prone to get cancerous cells due to the radiation.

So did you do radiations ? If so how did the doctors managed the treatment against that additional risk for you ?

The tried a new type of radiation called proton radiation which has so far shown no signs of causing more cancer to li fraumeni patients.

How functional are you now, how do you feel generally, and what do you see yourself doing in the future?

In terms of functional I do have some restrictions on things that I can do. My osteosarcoma tumor in my right arm left me with a titanium rod and restricted movement on it causing me to only lift a few inches up and out. So sports for me now are out of the question. I also have slight short term memory loss but for the most part remember everything. I plan on one day in the future attending culinary school and becoming a chef.

There are sports that do not require arms at all! Like soccer.

I'm not a great endurance runner either for that due to me missing a piece if my lung so that's why I don't partake in that.

How about skiing, snowboarding, surfing, etc? Those are really fun and shouldn't be too demanding.

Actually I have been skiing before a few years ago after my arm surgery. I went with a charity organization and a few other childhood cancer survivors and they taught us to ski with some private instructors. They just taught me how to do it with the poles for it. Definitely a week of my life I'm not going to forget anytime soon.

I know someone with a paralysed arm and they do fencing as it only requires the use of one arm.

Mhmm that would be interesting. Never thought of that.

How big a piece? Does it seriously affect your breathing i.e. are you out of breath after climbing a flight of stairs?

Roughly a in or so. Enough that I get winded from running for more then 5 minutes.

You're only two years older than me and I can't even concieve going through what you have, massive respect!

How has your ordeal affected your learning/social opportunities? Were you able to maintain schooling throughout, and if not, are you planning on going back?

Thanks for your time :)

In terms of learning it didn't affect me until after I graduated highschool when we discovered my brain tumor. I have a little trouble just studying and memorizing things but its a work in process. In terms of social its a little different because people look at me now and treat me differently. Some treat me better while others treat me like I'm left helpless. My true friends and family though look at me and just see me and for that I'm grateful.

How did this affect your education? Did you start homeschooling/get a GED?

Glad to hear you're in remission.

My school district sent out a private tutor to teach me a few days a week. It really helped me stay on top of my education and it gave me something to do while in the hospital for treatment.

Hows your sex life?

Still a virgin been to busy trying to stay alive.

Edit: I'm not surprised at all that this became my best comment in the ama. I am surprised by the gilding of said comment so thanks.

What did the surgery feel like?

I don't know I was unconscious. Afterwards though you wake up feeling a little loopy from the drugs and very sore I'll tell you that much.

Sorry my mistake, the brain surgery. Was it different than the others?

Ah the brain surgery. Now for that I was actually partially awake for it. They had me awake so they could ask me safety questions to see which part of the brain responded to make sure it was safe to cut in certain areas. Most of it is hazy and I don't remember much other then me mumbling my answers.

That is terrifying.

Doesn't seem to scary to me since I don't remember it well enough ahaha.

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No I can't say I'm really religious. I do believe that there may be some higher up kinda power going on I just don't let it rule my life day to day.

"You must really like trying to kill me, don't'cha, God?"

Does this sound like something you'd say if you discovered that a higher power exists?

Kind of. More like "If your gonna try and kill me God your gonna need something a little more of a big bang."

Death by snu-snu!

Wouldn't mind death by snu-snu.

As someone heading into the field of genetic medicine:

Have you meet with a genetic councilor?

If so, how was your experience with them? Did they explain everything on a level you can understand?

If not, do you plan on meeting with one? Who diagnosed you with li-fraumeni? Is it a traditional TP53 mutation?

(This last question i ask because i have an autosomal dominant disorder as well, HLA-B51 mutation which causes myself, all my siblings and my mother to have Behçets Disease ) Knowing what this disease has done in your life, has it changed your decision on having biological children of your own?

Thanks for doing an AMA, and congrats on the recovery.

I have meet with a few genetic major doctors that told me about it to a certain point. I know if I do want my own kids they have the same chance of inheriting the same trait. So I may adopt in the future but right now I'm in no hurry to have kids.

I know this is far away in your mind, but just for your information: You can actually (if wealthy enough to afford Invitro fertilisation at the time) do something called 'pre-implantation embryo discarding'.

You and your partner would have eggs/sperm extracted and embryos formed in the lab, then they will look at the genetics of the embryos and discard the ones that have the disease, which in your case is a non-functioning tumour suppressor gene that has autosomal dominant transmission, meaning only one copy is needed to pass on the disease.

They will implant in the women an embryo that is 100% free from your genetic disease and you can rest peacefully knowing you do not have to pass this disease on to your children.

I actually am aware of this technology being available but it isn't covered by my insurance and I don't have the money for it. That and a woman to bare the child lol.

Exactly how supermassive are your cojones?

About the size of coconuts. Hairy as them too.

Is your family paying for your medical expenses? Do you get any financial support from other sources?

It must be hard enough to stay alive as is. I can't imagine how painful it must be for a family, which is not able to provide money to keep the beloved ones alive :(

I was lucky enough to qualify for Medicaid. However there's been a lot of talk about it being turned into something else so my family and I are trying to stay update on it.

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I want to have kids but I don't think I will have any of my own because I wouldn't want them to suffer what I have. My family and sister haven't been tested for it yet but we are currently working on it. As to knowing of others I've never talked to another one until now.

Sorry you had to go through all that, glad you're here to tell your tale.

How are you feeling today? What are you looking forward to in 2015?

Today I feel a little sick with a cold so I am glad I have the day off. As for what I plan to do with 2015 only time will tell.

Were you able to keep a positive mindset? If so, how?

I did keep a positive mindset throughout majority of my treatments thanks to the support of friends and family. I just take it one day at time much like Master Oogway said in Kung Fun Panda.

Hey! I saw you mention an Xbox in one of your other comments. Do you have any favorite games?

I'm more of a Nintendo girl myself, Zelda happens to be my favorite.

Also, I just wanted to say that you're pretty awesome. I can't imagine how tough all that crap is, especially at only nineteen! Keep on trucking, fellow-game-playing-bro!

God there are so many games that I've come to love throughout my life. I love the Pokemon series of games excluding the recent two generations, I'm also a big fan of the Halo franchise along with The Elder Scrolls series.

Edit: Another game I just thought of was Super Mario Sunshine on the GameCube along with Super Smash Bros. Melee

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There's just to many Pokemon for me to keep track of and I don't have the right gameboys to play them on.

Have you ever read the philosopher-emperor Marcus Aurelius' Meditations? And, if so, can you reconcile your experience with his self dialogue.

Tell me a bit more about it. You have my interest.

Its really hard for me to describe... because it remains a bit of an enigma for me.

Marcus Aurelius was a philosopher emperor of Rome who adopted the philosophy of Epictetus, incidentally a freed slave. So here is a situation where a Philosopher-Slave became the philosopher of the time and the most powerful person in the Western World (likely the entire planet at that time due to the land holding and influence of the Roman Empire) adopted his outlook.

The Meditations were not named by Marcus Aurelius, he never intended anyone to read them, both its name and structure were added by the scribes that have carried a gem from the ancients to us today, they were personal notes, ὑπόμνημα, hypomnemata.

Greek spiritual exercises to keep Marcus on the path to ,ἀρετή, arete (Virtue) during intrigues of the court and expeditions on the battlefield (some of the Meditations were written while Rome was at war with the barbaric tribes).

Cool I'll have to check it out.

Was each of your three instances of cancer from the same source?

What I mean by this is was each a result of an original malignancy which traveled to another part of the body? Or were they three completely separate events?

The first two were osteosarcoma which occurs in the longer bones of the body and can spread to the lungs. The third one however was a completely different form of cancer call anaplastic astrocytoma in the left hemisphere of my brain. That's what lead the docs to discover my li-fraumeni.

I don't know of any myself, especially seeing how rare it is, but are you taking part in any medical studies?

If not, would you take part in studies to help fight/alleviate this in the future?

(I want to let you know, I would never look down on you for saying no. I imagine it's hard enough to get some quality out of life without becoming a guinea pig of sorts. I'm just curious.)

I probably will not do anything at the moment to help with research just because I'm trying to move on with my life. When I do die one day I'm more then willing to donate my body to research.

You said earlier that you have short term memory loss. What's the time frame that this happens and do you remember things later?

So for the most parts I do remember everything but I do occasionally forget small details of things here and there. Its a little hard to describe.

I'm 19 and can't imagine having all of those surgeries. Are you done with surgeries now?

For now. I know I will eventually have to get my titanium rod in my arm replaced in 20 years or so.

How did you discover the tumours? What were your symptoms? P.S You're just awesome and a hero for what you've been through and how you've dealt with it. Stay strong. It'll only get better, I promise!

What made us discover the first was me having constant shoulder pains in my arm. The 2nd it was found during a check up appointment when in remission. The last one was 2 years later when I had a seizure and they discovered the brain tumor.

Do you find it odd that certain cancers are "popular" ?

I mean obviously nobody likes cancer but it seems like breast cancer gets all the attention, but there are lots more out there that deserve attention as well

Please don't take this the wrong way, I don't mean to offend anybody. I just find it interesting from a sociological standpoint

No I do understand what you ate trying to say. I do feel like some cancers get far more attention then others breast cancer being a good example. I have no hate for wanting breast cancer to be researched for but it gets far more money then all the forms of childhood cancers combined. So I try to do charity work with several different organizations to help raise awareness.

Hello! I'm 18 and had my osteosarcoma removed a year ago. Now I only have one knee, and I will need to get blood drawn soon to test for li-fraumeni syndrome. Has this affected if you want to have children in the future?

It has. I do want to have my own kids in the future but I don't think they will be of my own. I may adopt I may not. For now I'm just taking life one day at a time.

As a fellow 19 year old who has had cancer, would you have liked to have other friends that went through the same thing? While I got chemo, I didn't want to talk to the other patients because they were always depressed but now I kinda regret it. Also, if you had chemo, were you sad about losing all your hair? I'm a girl and I was 13 when I had chemo so losing my hair was a big deal for me.

I didn't really talk to a lot of the other patients because majority of them were young 3-7 year old kids while I was a teenager. I mainly talked among the nurses on my floor and came to love them for everything they've done for me. Whenever I go to see my oncologist I make sure to stop over in their floor to say hello to those on duty. When I lost my hair I was a little sad at the time but I got over it and just wore a lot of wool caps.

Hey, I seen you over in that thread were the guy had 54 surgeries, glad you're doing this ama!

My question is; do you or did you ever think about (ontop of medications) try weed-oil?

my pops did when he had stage 4 bowel cancer, he swears by it

I have never tried weed oil before but I have smoked weed and tried consumables as well. I must say it really did help me with my appetite loss and nausea from my radiation treatment my last time with cancer.

He use to smoke weed and eat the consumables, now he takes nabilone .05 and sticks with hash

What nabilone? I've never heard of that.

Hello, you sound like the most unluckiest person on earth. You must be a fighter. My question is, do you know of any other people that have a case of li-fraumeni syndrome, how common/uncommon is it?

Its a pretty rare genetic trait. From what my doctor told me at least from his knowledge there is only about 400 or so people in the USA with the genetic trait.

Have you used cannabis or cannabis products to treat your eating problems during chemo or radiation, or have you used cannabis during your whole cancer "history" at all?

I never used it during my first two times with cancer but during my senior year of highschool I discovered marijuana and its fine properties shortly before the diagnosis of the brain tumor. I do still continue it now but my doctors are unaware that I have and do use it at least to my knowledge.

if youre ever in South Carolina ill smoke you out in a heartbeat

Thanks friEnt

I have an 18 month old nephew who was just diagnosed with leukemia. Given that he's so small he doesn't really understand what's going on or why he has to be in the hospital. But given that you have fought cancer three times already, what would the best advice be to give a parent of the cancer relapsed? Like emotionally how did you deal with knowing you had cancer the first time around?

Honestly I just kind said well let's just try this again. I've always just had that kind of attitude of just try, try, try again till you get it right. You only got one life so make the best of what you got.

I'm sorry if this is a sensitive issue, but are you afraid of dying?

Honestly I don't anymore. I know it happens to everyone. I just would like a few more decades of experience before that day comes.