IAMA 18 years old Chronic Myeloid Leukemia patient, suffering from a chronic type of leukemia where i have to probably drink meds for the rest of my life to survive. Ask me anything.

My mom is in remission for the same kind of leukemia. You probably already know this but keep yourself fit as much as you can. It's getting harder for her to do things because she almost never exercised and she's on oxygen 24/7 now.

What are your plans for life so far beyond surviving? Is there something you plan to study? Somewhere you really want to go?

My plan in life stays pretty much the same. I'm currently studying german and going to take the medical field in Germany. As i have been helped, i feel obliged to the people suffering like me and i want to do what i can to help others and hopefully myself one day. I try to maintain a healthy diet and everything. My biggest concern right now is simply my immunity in the face of Covid-19.

Viel Glück! Du schaffst das.

Vielen Dank!

Halt! Kommen sie! 😉 EDIT: I have chronic lymphocytic leukemia. Nowhere near as serious, but I can relate. Stay strong, keep on keeping on.

Levity leavens life

CLL may not be as serious physically, but i can imagine how painful and stressful the anxiety of checking if the cancer starts making it move regularly can be. Stay strong and accept it as part of you. Viel Glück!

Viel Erfolg 🙆‍♀️ du schaffst das! Ich wünsche dir das Beste!

Danke an alle

You say you drink your meds; have you ever thought about taking them in a martini glass with a maraschino cherry to spice things up?

No I have not, but you are giving me ideas ;)

Pricier than any fancy cocktail.... May as well put it in a nice glass.

Well if you put it that way, it really does seem like a nice idea.

If I can offer one piece of advice my uncle gave me when he was battling cancer:

​

- Do everything you can to enjoy the little things!

Here's hoping it all goes well for you bud!

I agree 100% to this statement, this advice should apply to everyone!

Verified.

Looks like you guys learned from last time lol

What post are you referring to? Just curious!

Kid done a post saying he's dying, got lots of rewards and people offering him things etc

Afterwards he edited the post and wrote something like "this is a joke lol"

Heard about that one the other day, that was actually quite insensitive of the OP imo.

Are you British? :) I think it’s more accurate to say OP was a real fucking dick.

No I am not actually.

I bestow you honorary British status for your understated tone.

I am honored!

You mention drinking meds for the rest of your life. Are you taking one of the TKI (imatinib, ponatinib, etc) or is this abrefeeence to something else?

Yes, i am taking imatinib (gleevec).

I was diagnosed with CML in 2015. I was started on Gleevec as well but unfortunately mine accelerated into blast phase by 2017 and I went through bone marrow stem cell transplant therapy.

FWIW it helped me to think of it like taking diabetes medication. In that diabetes, though also serious when untreated, didn’t have the same psychological effect as cancer. So I tried to just frame it as “those pills I take each day”.

Your age is an excellent factor for you as well.

How symptomatic are you at this point? Aside from pandemic restrictions, are you able to function at normal efficiency?

Pretty much normal, aside from more sensitive skin, i feel pretty much fine. Which is why i was more than shocked to see my white blood cells 26.3x the normal human amount. How has the transplant been for you? And yes, my age is a very important factor in this, i am hoping that i can get into remission ASAP before age cripples my immunity even more.

The procedure itself was rough. I was also specifically put on an experimental high dose chemo regimen at the beginning of transplant. Nuking the site from orbit as it were. I was in hospital for about a month. I was not working for around a year.

The biggest adjustment has been making sure to reduce UV exposure as much as possible to prevent GVHD (graft vs host disorder) where my new cells attack my body because of the damage from UV radiation.

Otherwise I feel like I’ve bounced back pretty well. I bruise a hell of a lot easier now though, which I attribute to damage from the IV chemo I was in during my hospital stay.

Any idea why your imatinib therapy failed though, this woukd be the first time i heard someone get to blast phase in just 2 years.

No clue. I had not been experiencing any significant negative side effects from the imatinib therapy and been going about my normal work/life routine for over a year (roughly?).

Then during a scheduled bone marrow biopsy they had a dry pull, meaning the bone marrow itself was deteriorating to a fibrous structure. The doctor did three pulls that day, two from left and right rear pelvic bone (I could google the correct name but... you know if you've gotten one) and then one in the sternum (because of the dry taps on the other two). He was desperate to get something he could get to a lab. I was in MD Anderson Cancer Center within a month and told I was in blast phase and rushing toward transplant. This was all in the span of about 3 months.

I'm sure your docs have told you this is caused by the BCR-ABL mutation. Somehow, at some point, my body just decided that normal was not the way. :)

And I suppose it is reasonable to consider the fact that I may have had CML for some time prior to my diagnoses. Still, my physicians were all taken by surprise as well.

Yes i am quite surprised as well. Congrats for getting it through the BMT though. I hope your condition stays controlled. Personally I'm hoping that I'd never have to take a BMT.

Hey fellow bone marrow transplant survivor! If you aren't aware, there's a great resource for people like us called BMTInfoNet. Their website was started by a woman that had her transplant in 1989. There's info from improving health post transplant to ways for caregivers to help through the process, and it is all free. They typically hold a live conference once a year, but due to covid, they have moved it online and it is actually going on right now. They get doctors, nurses, physical therapists, nutritionists, etc to give seminars to help with the issues we face from our transplants. I went to the conference in person for the first time years ago, not knowing what to expect. As you're well aware, the treatment regimen we had is an isolating experience, and to walk in a room full of people that have not only been through the same things we have, but are thriving, gave me a lot of hope. My diagnosis was ALL but I'm also positive for the Philadelphia chromosome. So much of my time in the hospital was doom and gloom, so the conference was a different and positive outlet for me. I hope your health is good and you feel well.

I wish you all the best!

I wrote my thesis on CML treatment 10 years ago - adherence to your meds is key and it has very positive outcomes for patients that do. I know when I was writing in the standard was gleevec and they were just changing to tasigna. I haven’t kept up with it but gleevec was a mind blowing drug at the time. Good luck !!!

Yes, i heard most people that get resistance aren't disciplined enough on the drugs. That's why i always take it as a life or death situation (if i don't take this, i die) kind of thing.

Yes my model showed the factors of non adherence which a lot was due to cost, comorbidities, etc - I can message you the abstract if you’d like - it’s published so it’s just a link :)

That would be great, thank you!

What does it taste like?

The drugs taste bland, doesn't really taste like anything, but it hits harder than Jalapeno in your stomach.

but it hits harder than Jalapeno in your stomach.

As in it's spicy or it give you upset stomach?

It gives you an upset stomach, you feel it most if you haven't eaten full before you eat the meds.

i'm also on imatinib for a GI Stromal tumor (removed 2018). I've been on it a little over 2 years. side effects were minimal at first so long as i took it as directed. but eventually intermittent fatigue started and nausea and some of the other side effects.. heartburn, muscle pain etc.. but they come and go and aren't as severe if i've had a good night's sleep. being so young you'll probably tolerate it pretty well. I'm near 50 and have other health conditions. anyway.. just wanted to wish you well and commiserate briefly.

Yes, age does play a big factor in my tolerance to the drug. I wish you well on your treatment!

What were your initial symptoms like? When did you think you were in medical distress?

Actually it was just me feeling like I'm starting to bruise a lot. I felt healthy and fine which was why it was such a shock when the regular blood test results came in.

What was your next noticeable symptom? I bruise for seemingly no reason in random spots and have never thought anything of it.

Some of the bruises started to make lumps that not even general doctors could explain why. But other than that, the fact that i did a blood check right after was sheer luck, i can imagine how people with this cancer can not notice they have it until it's on more aggressive stages.

What did the blood test show? Like low blood count?

Normal humans have a 5-14 white blood count, I had 263.

Wow. Good luck with the treatment buddy.

Thank you! Wish you all the best too.

I find it so fascinating that we now can determine if someone is ill by how their body is gearing up for the battle/war so to speak. Generally the immune system as a whole is fascinating. Good luck with your treatments!

Part of the reason i want to take oncology specialist, it is truly magical.

My mom is in remission for CML. One day she came into my room and asked me to drive her to the hospital out of the blue. She said that she felt like her heart was struggling to pump blood, which turned out was because their were so many white blood cells that her blood was like sludge.

That's crazy, the problem with CML is that you never notice it until it's almost too late, which is why i can consider myself a little lucky.

When my boyfriend had leukemia (AML iirc, not the same kind) he looked sick af, his coloring was all off and he had really gnarly headaches.

AML is a very different kind from mine, AML is direct and severe, with a fast treatment.

Mine is the silent killer type, you won't notice it until it's too late and the drugs you take are lifelong.

I was diagnosed with Leukemia APL back in October 2019...as of June I am cancer free and my odds of remission in 5 years is less then 3%...it was a tough fucking journey that I had some very, very close calls in the first 45 days of treatment.

I can echo the bruising being the biggest thing for me. I started to get bruises for simply brushing up against a wall, and cuts seemed to take longer to clot.

All I can tell people is if you think you are bruising a lot easier then normal, PLEASE finger a blood test. It's very simple and it can save your life.

Agreed with this, good luck and hope you stay healthy!

Hey CML buddy! I was diagnosed in 2007 and I've been poppin Gleevec daily ever sense. Feel free to reach out if you wanna chat about it.

Hmm, guess I need to ask a question or automod will probably eat my post. What sort of direction would your life to take? Are you in high school? College? What do you plan to study?

Just finished highschool, currently taking german lessons and planning to take medical school in Germany in January. The dream is to practice and research on oncology and cancer, which is in a way ironic.

That's awesome! Have you always been interested in medicine, or have you been swayed that way recently in light of your diagnosis? Why are you looking at Germany specifically to study in?

I've always been interested in taking medicine, but i am now more so sure to take it as a lifelong commitment. As for my Germany, first would be free health care and education, and Germany being one of the named countries to study medicine in. And a personal interest in Europe as a culture.

One of my best friends is a CML survivor, from the mid-90s, before gleevec was a thing. Her brother was a perfect match for a BMT, and the procedure was done the day of her 16th birthday. Sweet sixteen! She's been in remission since, though not without some long-term health complications, which she just handles like it ain't no thing, because she's strong as fuck and one of the best humans on the planet.

She is an oncology nurse, working in a ward for leukemia and lymphomas and BMT, all in-patient treatments. Every day, she helps people through something she herself survived and she impresses me every day. She really helps people.

I think you'll do the same.

Best of luck!

She is an inspiration! I am hoping to be able to help people all the same.

I was diagnosed in 2008, took gleevec for a few months then became unresponsive to it, switched to tasigna, very mild sides compared to gleevec and have been in remission now going on 4 years. Not taking any oral chemo since remission, have less brain fog and stomach issues but still am very fatigued and bruise easily.

Have a new outlook on life, stopping to smell the flowers as it were, you never know when that last day is, let the little trival things go and focus on what's really important.

Agreed! Best thing about having this condition is that you appreciate the little things more.

Hey. 20yo Cancer patient myself here (no CML but stage IIIc melanoma, with recurring Mets discovered 4 weeks ago.)

How did you take your diagnosis, how did your family react to it and how did it affects your friends?

I read youre wanting to go to med school here in Germany. That’s actually my plan too ;) and I don’t think it’s any odd you’re looking into oncology and stuff. Especially because of your history.

If you ever need some help with learning German feel free to hit me up :)

Vielen Dank! Honestly it was full of stress and it still traumatizes me to this day, something like that is just something you can never forget. My friends called in worried sick. And my family is on the stage where they're half not wanting to talk about it anymore and ac like nothing happened, and half still worried sick about how the outcome would be. For me, i'm just taking life day by day.

How did you first find out, by routine blood test and further investigation? Also how are you feeling right now ? I hope you have a great day.

Feeling fine, i am just worried of Covid and it's outcome currently, considering my half broken immunity system.

Funny story about how i found out, i actually caught the start of the cancer when my white blood cell level was 25 when the average was 14. I wanted to check because i was in a biology class about taking blood samples and seeing them through a microscope, in which i saw my blood as being different from everyone else, like everything was broken, I brushed it off because i also had a fever to the fact that i was sick. Little did i know that 6 months later it would be at 263. TIFU i suppose.

Would the outcome have differed if you went to the doctor that day? I hope that doesn't come off as insensitive, obviously there was no way for you to know.

Probably, no way to know for sure but early diagnosis is the single best countermeasure to make sure mutations don't happen much and you can control it. It should affect my overall expectancy overtime but I'd rather not think about it and focus on the present for now.

Why didn’t you ask your professor about it? I would have been super curious

Professors didn't know shit ngl, they just laughed it off, took to me to say something is probably wrong with myself to take a look. But then even I convinced myself it was nothing.

Edit: not saying all professors are shit, just the professors in my school personally which didn't really care.

Are you a stupid kid who will later reveal this is all fake because you like reddit gold?

I heard this happened a while ago. r/IAmA requires proof to actually make a post so I'm not even sure how that happened the other day.

I was kidding about you lying, sorry. Bad joke .

I'll be honest, I confused r/IAmA with r/ama.

No offense taken at all. That OP was a dick to say the least.

What is your life expectancy?

This varies very very differently, some live to old age no problem, but it can't really be tested as this drug isn't as old as one generation. With age on my side, 80+% get through a minimum of 5 years before needing to do anything else. Ive seen people take it for more than 10 years no problem, and some where the drugs doesn't even last a year.

CML patients have a near normal life expectancy these days. Treatment is excellent, and while a few people are drug resistant the vast majority are not.

I’m a CML patient, and also a “Patient Expert” through work with the health service where I live.

Hope that stays true.

How did your life priorities change after you were diagnosed? Given your age, I’m wondering what suddenly jumped up your list and what suddenly didn’t seem to matter any more

First would be relationship and the way you look at them. It pretty much went from "I need to do everything in life" to "I need to live life with the people important to me because I never know when I'll stop seeing them.

Second is how the present matters so much more to me than future now. Everyone tends to look at the future and what they wanna do and be while they neglect what they have.

Lastly, self image and having a lot of friends pretty much went down on my list, I don't give a single crap about how little friends I have anymore, more so that I know the people I call friends are ones that cared deeply for me in my lowest.

What could a healthy person with no immediate family with said disease (aka no first hand knowledge) be unaware that they could do today, next week, next month to help?

That's quite a though question, all i can say is that if you ever see someone with a similar condition, we don't want to be treated any differently, we don't want people to go "oh you have cancer, I should do this or that for you" we just want to be treated no differently as a normal person.

Well said. When i was diagnosed i didn't want anyone to worry about me or cry. It just made me feel worse when i saw people upset and sad. I'm thankful for my good friends who visited me and treated me normally and we talked and laughed like nothing was going on.

It was the same with me, it was probably kind of selfish that I wanted to cry on them but expected them not to get upset on me. but I am thankful for the people who helped me on those times and stuck around until now.

Sorry to hear about this my friend. How has your body been dealing with taking Gleevec so far?

I was diagnosed with CML 10 years ago when I was in highschool as well. Although it seems like you have hit an unlucky patch in life you can still expect to have a great quality of life with this disease.

There are alot of great tips in here so far, I think the most important for myself was staying fit and eating healthy. I had some not ideal side affects taking Gleevec, mostly vommiting and some swelling in my eyes. I have switched to taking Sprycel and I believe this drug is far less harsh on my body than Gleevec was.

The best news out of all this is that there is a chance you can potentially stop taking the drugs later in life which is amazing. Under doctor supervision, some patients have been able to stop taking medication and did not have any traceable signs of the disease after a period of time. I have failed this stop test once, but doctor's are willing to try many times with young patients as they are able to handle this disease much better than older folks.

At the end of the day, it's just one pill that you have to take with dinner. As long as you don't forget to take that pill you should be able to live a happy life. Just remember that you are not your cancer.

Also aiming for that non-drug dependant life one day, good luck to both of us ;)

Gleevec hasn't been too harsh i suppose. I'm the lucky few with no side effect that's too problematic.

Welcome? to the CML club. I was diagnosed in March 2014. I've been taking Tasigna twice a day every day since. Works great. By Sept 2016 my BCR-ABL was completely untraceable. Hoping to try and get off of it next year. If you aren't getting good results, maybe look at Tasigna. How often are you being tested?

I'm still at year one, diagnosed at October 2019, so i get checked every month, and i'm taking gleevec instead of tasigna, everything is going quite well so i don't see myself changing to tasigna anytime soon unless necessary.

For sure. As long as your body is responding keep going with what you got.

Also, I promise you you'll stop thinking about it after a while.

I surely hope so, how has life been treating you?

Okay I'm going in deep but what are your thoughts on the right to die?

Agreed as long as it's a clear conscioused decision for a reason, i don't believe people should just have a right to kill themselves for no apparent reason and those people need help (suicidal thoughts, etc) but for things like cancer, things are very different, you're a burden to yourself emotionally and financially to your loved ones. So worst comes to worst, it should be the choice of the one suffering the disease.

Diagnosed with CML at 23, and went into remission by 26 on Sprycel (Disantinib). Being young helps for sure with this cancer. I'm not a doctor but I've been told by many most our age (under 40) will not be on these meds our whole lives.

The best advice from a doctor I got was to treat it like high blood pressure. If you don't take your meds it'll kill you one day, but not today. Psychologically helped me a lot.

I know this is an AMA, but wanted to chime in.

What led to your diagnosis?

Easy bruising, and sheer luck to have enough concern to take a full blood check.

That's true, doctors have been saying it's all about your discipline to the drug.

23 year old CML club! I went into remission around 6-7 months of full dose nilotinib

I got diagnosed a year and a month ago. It was caught early by a random checkup blood test

My advise to other young cml people is to treat it as a marathon, not a race.

Our kind of treatment might not drain us completely but it's living with it for a long time that can be challenging.

Hopefully we'll see some cure in the next years or decade.

I've heard of studies that have already achieved treatment free remission after some years with Nilotinib!

Took me 3 years! Damn good early catch!

6 Months and i think i'm getting close to remission (0.0056%), here's hoping i get it in the next 3 months.

What changed in your thoughts from when you thought you were healthy to when you were sick?

I know this sounds cliche, but there are a few things:

1. Life isn't just about what will be, but we tend to neglect the what is. I as a teenager is no stranger to this mindset, but once you get a condition like me, going to school feeling bored and gets diagnosed with cancer in the afternoon. It really hits you hard feeling something as mundane as school is something you're begging to get back to. Again, people tend to say "I want to" but tend to not really appreciate what you have right now. Look around, smile, even if you don't have things a lot of other people have, smile for it, because no matter how mundane it is, it won't last forever.

2. People, especially people my age tend to say "I'm not afraid of death", this is true for myself too. But only when something like this happens do you realize how scared you really are of dying. Not because you won't live anymore, bur because of the things you still want to do, you still want to say with your loved ones. From your family, friends, and S.O, to think that there will be a world soon where they may not have you in their lives again, it makes you so scared of death, especially seeing their reactions of my diagnosis firsthand.

3. Nothing is a coincidence, it doesn't matter what your beliefs are, atheist, christian, or anything else. Everything happens for a reason no matter how bad it can be. Sometimes we just don't realize it. I myself would like to believe this is a wake up call for my life for a variety of reasons. Also i am thankful that this cancer is also an opportunity for me to see the world in a way most people can't especially in my age.

How much of your cancer do you attribute to genetics? How much to lifestyle? And how much to Reddit comments?

Genetics 0%

Lifestyle 20%

Reddit comments 80%

in all seriousness though, lifestyle doesn't really affect this type of cancer, more so stress and sheer luck.

Do the meds taste nice or are they gross? What's the consistency like? How long would you survive without taking them? How do you stop yourself from just giving up?

Not trying to be a huge downer but I just know I wouldn't have the mental strength to keep going. Props to you for being strong.

They're simple dense pills with no taste so it's pretty much neutral. It's not about how long I'll survive without them more so how much my life expectancy will be damaged if i skip taking them. Cancer is a very smart disease that can mutate if you give it even just a little leeway, not taking it everyday will very likely result in the cancer mutating to resist the drug, and that's fatal.

How to not give up? Well honestly i'm surprised i haven't needed therapy myself. But the effects are there, insecurities, sleepless nights, depressed days where you just shut everyone out in the corner and cry. But, it's all about the bond and the people you have. I keep going for the people i care about, for my family, for my friends, my girlfriend, and my hopes of taking medical school and helping others to give them hope as I know what it's like to feel like there's no more hope.

Hey, I was Dx'd with CML in April 2010. I got mine from my foot hurting, which was bc my WBC were so high it was messing up my uric acid levels and it ended up giving me the gout at 25. I've been on gleevec ever since. Are you in the US?

The only pain I get from the meds is they are expensive and dealing with specialty chemo pharmacies are the worst. Make sure to stay hydrated as the only nagging side effect I've had is crazy muscle cramps every now and then in muscles that you didn't even know you had. I also was getting fatigued when i took it in the AM so I have to take it at night, which can be an adjustment. All and all pretty good though!

Being Diagnosed is insane though. I'll never forget the terrifying time between knowing i definitely had leukemia and not knowing if it was treatable. Wish you the best along with undetectable PCR results!

I feel you man, the fear never truly goes away. No, i'm not in the US, which i would say is probably a good thing (free healthcare). I have more severe side effects with sensitive skin, rashing, etc alongside the periodic cramps. But my only symptom was easy bruising.

Is CML like other cancers where spreading to other organs especially the brain/spinal cord is a big worry? If so, do you have to take any other medications to help prevent the spread to the CNS? Or, is imatinib (gleevec) sufficient to prevent metastasis?

Leukemia is a blood cancer. It’s literally everywhere.

Source: I was diagnosed with AML 2 years ago.

A blood cancer is all around your system and it can increase the chance of other cancers popping up, but i say with proper discipline in taking the drugs it's not too much cause for concern for now in my youth. Fingers crossed hoping they find the cure-all to cancer soon i suppose!

My mom was diagnosed with CML in 2013 and has been in remission for about a year and a half now. I say that you live in Germany, if you dont mind me asking, how much do you pay for your gleevic? My parents luckily have good insurance and well paying jobs that it wasnt too much of a burden for them, but I know other people in the US are not so lucky. I'm always curious to find out what people in other countries pay for the same treatments.

I am not yet on Germany at the moment, planning to go there for Uni in January. Right now with government insurance it costs around 300$/month which is not bad at all, but in Germany it should be totally free.

Where in germany do you want to study? In case its munich, send me a pm. I am from the field and could provide some contacts if interested.

Thank you for the offer! I am either going for Cologne, Munich, or Berlin. I will surely contact you it its Munich. Vielen Dank!

Where does it come from?

Genetics don't really play a factor in this type of cancer. More so stress and sheer luck. I can vouch for stress as i was probably having one of the hardest years of my life.

Do you worry about society breaking down and your meds not being available?

I actually do, especially in light of Covid.

What interests do you have?

Research in technology to improve our health, a side hobby in penetration testing and computer networking, although not a passion, computer building, philosophy and the universe and such, and a little hobby in the mind and psychology.

Do you put ur liquid medicine in "potion" like bottles to make ur mundane consumption daily medicines more interesting? Like a game character with powe boost potions?

Great idea! might try it out lol.

"I must take this potion every day or i shall dissappear from this plane of existence." sounds cool.

This seems super rude, but may i know how the prove that you're actually having cancer?

There was a post the other day of someone saying they have cancer, have multiple awards and then he revealed that he's lying

I did give proof to the Mods to get this posted but i don't really feel comfortable with posting my medical info in public, sorry.

What sort of side effects do your meds have? How strong have those affects been for you?

It varies person to person. Most common side effects include nausea, very sensitive skin (bruising, etc), intestinal problems, water retention on feet and eyes. Personally my side effects haven't been as bad. My melanin is having problems, meaning my skin is getting more UV sensitive and my skin is getting whiter (I'm asian, yellowness starting to dissapear), and some rashing. I would call myself one of the lucky few.

Sorry for the diagnosis and I hope these death questions aren't too sensitive.

How have your outlook on life changed? Has your changed outlook on life eased your fear of dying?

Not at all, feel free to ask!

My outlook is simply to live in the present now, something most people my age won't really understand. Everyone always says "I want to be this or that, i want to have this or that", it all gets thrown into shit once you get a condition like this. Make connections, smile for what you have no matter how small, because nothing lasts forever, not even mundane boring school, not even the the friends that stabbed you in the back. In the end it all doesn't matter. Be grateful that you get to experience it al all, no matter how good or bad it is.

Lastly, i'd say that it does make me more accepting of death as part of life, it makes me appreciate the connections and bonds i have with other people more, be it family, friends, or girlfriend, etc.

Im autoimmune compromised with Selective IgM deficiency. Found out at 35. Was told by others usually its diagnosed with something like leukemia. Ive had to comfort my whole family esp my parents while they don’t know how to act around me anymore. I did some psychedelics and it really calmed me down and relieved my fear of death completely.

I guess those arn’t really questions though. Do you have any favorite hobbies or books or music/ movies? Im a fan of anything that makes me laugh in all the chaos. Stay strong.

For hobbies i'm pretty much a cliche PC gamer. Haven't read a lot of books. Favorite games being Nier: Automata (an amazing game), and other games with rich stories. best movies are no question all Christopher Nolan's, watching interstellar is never boring.

Has Cell Therapy been considered as treatment?

Not yet for me personally, my condition hasn't gotten to a point where those kinds of therapy is needed.

Do you supplement your meds with a sentient soul drinking sword? I read somewhere that helps. Sorry for all your struggles. You may enjoy the fantasy novels of Elric of Melnibone and the Thomas Covenant series if you have time on your hands and need something to read. Stay safe and be well.

If only reality was that awesome lmao

What do you belive in? I mean, like what do you think it's going to happen once you die?

Long story short, i believe in the existence of souls, our souls determine where we go next, much like a dream. Live a life full of regret and your soul will be trapped here, never wanting to let go. Live a life full of regret and wish for happiness and you'll end up where you want to be. It's all about what you do in life.

Do you believe in god?

I believe in a higher power that governs over us. I don't really believe it to be the God in bibles, but I do know someone or something is watching over us.

When you were diagnosed, what other sorts of issues were you going through that made it a low time in your life?

Last October, everything from a big project deadline, to serious relationship issues, and general stress in high school. (I live around Asia, everyone knows how harsh the school system here is, plus the fact i go to one of the top in the country)

CML is pretty rare at young age (median age is 55-60 years). No known causes, save for ionizing radiation and benzene.

Do you often wonder about what triggered your CML?

Yes I do, everyone says it's strange. Personally i'd believe it's just fate and stress.

Thank you for sharing info here in this IAMA. Are you saving money or spending money? Has Leukemia treatment progressed since 10-20 years ago?

Not spending much money, since free healthcare is a thing.

Leukemia treatment has progressed amazingly fast with the existence of newer and more effective TKIs (Tyrosine Kinase Inhibitors).

ever heard of The Max foundation? They provide Glivec to about 35,000 people in developing countries with CML - a lot in India but they work throughout Asia

No i have not. But Gleevec isn't really a problem for me as i have free healthcare.

what was the first sign that something was wrong? how did you discover you had leukemia? what made you want to see a doctor?

Just easy bruising, it led to me luckily trying to take a normal blood test and discovering my white blood cell count was 26.3x the normal human amount. Went to a doctor right after.

What can others do for making your life easier?

Probably by just treating me as a normal person and not giving too much "special treatment", it can be good sometimes, but on others you just feel different. And try not to burden someone with cancer mentally too much, it can be tough to handle both the emotional stress and the fear sometimes.

My wife was just diagnosed with CCL. She's 57 now. We have no idea what to expect. What should we prepare for?

I don't want to be morbid but i'll be realistic here.

CLL has it's ups and downs, on one hand you don't have to worry about drugs, CLL is a condition most people can die "with", not "because of". On the other hand, it is mentally stressful knowing that you never know when the CLL will start making it's move. All i can advise you is to check regularly and keep your mental health good, it does effect the outcome. Seek therapy, find a way to accept that it's part of you and something you have to keep in check. Being wary is important, but not paranoid.

Is your condition due to a chromosomal translocation? I know some cases are but I don’t know if all cases are.

Yes, it is a a chromosomal translocation that results in something called the Philadelphia chromosome. Being Ph+ is the key factor in having CML.

Could stem cell Therapie Help you, Like the famous and wealthy go to (in Panama), to directly inject stem cells I to the bloodstream?

Theoretically it could, but it's not really needed considering the drug i'm having is working well so far. It could be a method I could get cornered to one day though if there was no other way. Stem cell is a very new treatment after all.

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Gleevec (imatinib) , it's been 6 months for me and my PCR levels has gone to 0.0056%

Not to be morbid, but has this made you make plans for a living will or a list of what you'd want done in a serious hospitalization? How did you go about that being so young?

Simply by accepting it and living life to its fullest everyday. And yes, i do have plans for that if necessary, but I don't see myself doing it anytime soon, I don't wanna think about what could go wrong just yet. Better to simply live my life the best i can for now.

I am a med student ,i have studied in books like cml can be cured by drugs like imatinib ( gleevac ) what drugs you are taking and what was your Symptoms and how drugs helped ? Sending you love and power to you :)

I am taking gleevec now, and the symptoms were simply very easy bruising, the drugs feel more painful than helpful with the side effects, but it's better than dying i suppose. Thank you for the support!

Would you say you drink your problems away?

I drink but only socially, never really got addicted to drinking so no, this isnt the case for me.

How could you describe leukemia to someone who hasn’t experienced it before?

It's like any other cancer but it's invisible, like you can't even see that you're sick, all you know is that the numbers in the papers from the blood checks you get every month are pretty much the decider if you'll be okay to live normally for the next month, or something is wrong and you need to start worrying about your life again. So for me, it's pretty much like getting school test result every month with the stakes being if you fail, you'll probably die. makes you anxious every month for those results to come out, but scared to look at it at the same time, every time.

There is always a good side to everything. What do you think is good about your condition?

The fact that i can view the world in a way most other people young or old don't, to appreciate life and a smaller things more, and to appreciate connections more.

What kind of caring expressions someone ever said to you but it's actually only affect the other way around?

Anyway, I have scrolled through your answers and I just wanna say that you're very amazing. Totally amazing. I don't even need a reason. Kudos to you

Probably when my non-close friends asking me about my condition once i got back to school. It sounded more pity and "thank God I'm not him" than actual care. It made me more insecure than safe.

And thank you very much for the compliment!

I suffer with Essential Thrombocythemia which can turn into Chronic Myeloid Leukaemia if I neglect my medication. How were you diagnosed? Via platelet count? (If you don’t mind me asking) Fun fact: also have MS which can be brought on the same as blood disorders - stress, lifestyle factors and lack of sleep in earlier years.

My white blood cell count was above the 14 normal at 263 so it was quite obvious, from then it's just a large ass needle up my spine to find out it was CML. And yes, who would've thoght stress and lack of sleep can effect you so badly right, i know i didn't.

What's your wildest fetish that you want to fulfil?

Not sure, probably too much for me to count ;)

I was diagnosed with AML last year in May, had to undergo chemo , free from it now, still on some meds and regular tests and biopsies for next 5 years. I know it must be difficult for you but i know you'll get through it. God bless you mate :) Hope you have a fast recovery from all this. What type of blood tests did you do which detected it?

It started with regular full blood checks, then on to bone marrow test. And thank you, i hope your freedom from cancer lasts, and wish you all the best.