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krasivaya_luna's avatar

I have leukemia for the second time in my life. What should I do?

Asked by krasivaya_luna (65 points ) July 29th, 2011

I’m 19 years old and this is my second time dealing with leukemia. My doctors have given me a pretty grim outlook as well. Right now, I’m being faced with a huge decision. I went through the treatment before when I was a lot younger and in another country, and it was the worst thing I’ve ever done in my life. It was absolute hell and I barely made it. I’ve already been through enough suffering in my life and I’m to the point where I just want to give up. I fear that having leukemia a second time will just lead to a very miserable death.

Against my family and friend’s will, I want to refuse treatment and have as much fun as I can before I succumb to my illness. However, everyone else wants me to go through treatment. They say I just need to “have a little hope” or “believe in myself.” I feel none of that. I don’t want to become a prisoner to a debilitating disease and stay in a hospital until I’m on my last threads.

Also, those of you who have had cancer or a similar illness, what has given you hope in times of suffering and despair? What helped you deal with your sickness? How did your family and friends respond? What kind of things can I expect if I do go through treatment? What words of wisdom or inspiration can you give to someone going through this illness?

Sorry for the Berlin Wall of text here, but I am very confused and scared right now. I have a lot of questions. Thank you all, in advance.

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26 Answers

chyna's avatar

Hi, and welcome. Have you found out about the treatments now? They have made great strides in the treatment of cancer since you had it the first time. Find out all you can about the new treatments before you make a final decision.

TexasDude's avatar

You survived once, and there is no reason why you can’t survive again. You mentioned that you want to “have as much fun as you can” before succumbing to the illness… wouldn’t you rather take a chance and potentially wind up with a long full life (after beating the disease a second time) in which to enjoy all the things you enjoy rather than living with an expiration date?

SpatzieLover's avatar

One of my best guy friends went through Leukemia at age 13–14. He went into remission, but it came back from 16–17. He fought it hard. He is alive and well.

A lot has happened in cancer treatments since he completed his therapy when we were in high school. His outlook/prognosis the 2nd time around was also grim…made even more grim by the death of a dear friend of ours that succumbed to an inoperable brain tumor.

BTW, the brain tumor our friend had is now operable.

My best advice to you is to reconsider the fight.

poisonedantidote's avatar

Leukemia cure rate of 90% for all just around the corner

I’ll be blunt, I support peoples right to make their own medical choices, and even the right to things such as euthanasia. However, in your case, even without the groundbreaking research, your odds are still too good for me to agree with your decision at this point.

I don’t claim to have ever suffered in the same way a cancer patient does, I am totally oblivious to what you are going thru. However, I can picture my self in your situation, and I can see how it would make you want to just give up, but don’t.

You probably feel cheated, and sad, and oppressed, maybe even victimized, but you are not a victim yet. Fight!

SpatzieLover's avatar

@poisonedantidote Brings up a good point. I believe in hospice. I had a grandma die of Leukemia after a long battle with it. this was back in the late 70’s At the time, hospice wasn’t around like it is now. She had to pass in the hospital.

I suggest you write down all of your final wishes to properly prepare your family. Then, I suggest you fight like hell so you they don’t need to know your final wishes until you are an old man.

Pandora's avatar

I know you probably think its easy for people not going through it to recommend you go through with the treatment. But that has more to do with the fact that you may be making this decision based on your emotions rather than what seems more practical to us.
You are 19 and your too young to give up. You’ve barely scratch the surface of life.
As already mentioned, things have changed a great deal since your last treatment. Doctors aren’t always right. There are a lot of people who have survived despite grim doctor predictions.
At least give it a try and see what can be done before giving in to despair.

poisonedantidote's avatar

Even if the doctor tells you that you are going to die a horrible slow death, that will drag out and take a couple of years to kill you, even with all their best treatement, it is still not a good enough reason to quit.

Technology is moving so fast now days, that there is just no telling what will happen. A new invention could catch the eye of some researcher, and before you know it all cancer in all it’s forms is gone forever.

Our species is old, but cutting edge medical technology is still very new. Even just 50 or 100 years ago we were doing unspeakable things to people in botched attempts to help them with their problem. Now days, we can play with attoms and particles, we have made motors that are only a couple of attoms in size, nano technology cant be much further away now, a thousand things change every day.

Think of all the diseases that have simply been wiped out over night because of a new idea. Diseases that killed millions and millions of people, feared by all, simply erradicated, with what now seems trivial to us.

…And lets not forget, with all this in mind, that your situation is not that bad. Even if it were that bad you would still have hope, as it is now, you should have far more hope.

redfeather's avatar

You seem like a fighter to me. :)

krasivaya_luna's avatar

@chyna Thanks for the welcome. I’ve talked about the treatments with my doctors and they still sound miserable. I’m a very active person and I really hate being sick. It’s just not something I’ll look forward to.
@Fiddle_Playing_Creole_Bastard Good point. However, I feel as though I’m gambling if I just do treatment and have that possibility of death lurking above my head.
@poisonedantidote Thanks for the link. I sure hope something like that happens soon.
@SpatzieLover I’m sorry to hear about your friend. Thanks for the “last wishes” idea.
@Pandora I’m trying to think in that mindset, but I just feel hopeless. :(
@redfeather It’s almost like you know me or something ;)

poisonedantidote's avatar

Don’t pay too much attention to the doctors tone of voice and all that noise, all doctors are terrified their life will be ruined if they should happen to say the wrong thing and get sued. The wisest thing the doctor can say to you is “it’s not good” and things of that nature, because at least like that, if you don’t make it, they can’t be sued for filling you with false hope, or something allong those lines.

Pandora's avatar

I believe in the power of attraction. If you have a possitive attitude your out come will be possitive. If you dwell on the negative you will only recieve negative results.
I think your more hopeful and possitive than you think or you wouldn’t have come to us looking for us to talk you out of giving up.
I think you definetly want to give this a shot. Your just scared to pin all your hopes and your life on it. There isn’t a person on this planet that likes feeling sick. Its going to take all the courage you have to see this through. But you’ve been through this once before and beat it.
Don’t doubt your inner strength, you’ve proven you have what it takes. I’m sure the odds of you making it the first time was against you as it is with everyone. Not everyone has the inner strength to make it through.
I’m sure your family will be there all the way to champion you through it. Whenever you need to give them a break, you can come on here and escape with us or even talk to us to help give you a little extra support.
Your frightened and your probably angry or if not, you probably will get angry. Get angry. Get good and pissed. I know I would. Vent, yell, and then fight like crazy. Like this is one mean, ugly girl who is determined to take you down but your going to kick her ass all over the school yard till there is nothing left of her, and your going to ignore any blows she send your way.
I know at 19 I would’ve fought like crazy against anyone or anything trying to take me down.
So put the tissue down and pick up your boxing gloves, hell, claw or scratch if you have too. Just win!

bea2345's avatar

In 1997–8 I was treated, successfully, for breast cancer. The treatment was protracted and uncomfortable, even painful. The cancer returned in 2010 and I am now being treated for it. The difference is remarkable. There are better and more effective medications, less invasive methods of examining one’s progress. So go in there, take the treatment. It just might work.

krasivaya_luna's avatar

@Pandora That was probably the sweetest, most inspiring thing ever. Thank you so much.

@bea2345 That’s definitely a hopeful outlook. I’m glad they’ve made advancements.

poisonedantidote's avatar

15.7% – Thats the rate of people who die from leukemia once they are over 20 years old.

The more I look at statistics, the more it seems you can beat this thing if you can just make it to 20 years old.

Diagnosis by age:

63.6 percent were diagnosed under age 20
9.7 percent between 20 and 34
5.8 percent between 35 and 44
6.1 percent between 45 and 54
5.3 percent between 55 and 64
4.5 percent between 65 and 74
3.4 percent between 75 and 84
1.5 percent 85+ years of age.

Death rates by age:

22.2 percent died under age 20
15.7 percent between 20 and 34
9.6 percent between 35 and 44
10.7 percent between 45 and 54
11.1 percent between 55 and 64
12.9 percent between 65 and 74
12.4 percent between 75 and 84
5.6 percent 85+ years of age.

Survival rates by race and sex:

65.2 percent for Caucasian men
66.7 percent for Caucasian women
54.2 percent for African American men
54.8 percent for African American women.

I know these statistics are not tailor made to your personal situation, but even so you have to admit there is a good chance you can make it.

The most trustworthy looking statistics I can find for survival rates for people who get it a second time is 40%.

Even if you are elderly and had it before, and it is in late stages, they still give you a 15% chance of making it.

EDIT:

The stats are 8 to 12 years old… we can only assume they are even better now.

Pandora's avatar

This is one of my favorite poems by Dylan Thomas. You might have read or heard of it before.
I like to think I will rage when it looks like my time will be up.
Do not go Gentle into that Good Night.

Old age should burn and rave at close of day;
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Coloma's avatar

Welcome, and my heart aches for you in having to contemplate such serious matters at such a young age.

A lot of really good information has been shared by others here, all I can say to you is follow your heart, and those that love you will support you in whatever choices you make.

I understand your thinking and while I wish you a full recovery I support whatever it is that YOU want for yourself.

Peace and much love to you. :-)

Symbeline's avatar

Welcome yo. I say, if the treatment is available to you, go for it. I agree with your family and friends.
I’m not too familiar with Leukemia, but if you’ve been through it before and got out of it, it may be done again, right? I know that it has different phases, but if whatever phase you’re at right now may still be treated, I’d do it, it, if that was me. No matter the hell to be followed. After that, you’ll get to have fun again. Or at least, I sincerely hope so.

But if you don’t want to live with a debilitating disease, please do what you can to prevent that, if it’s possible at this point.

I know that nobody wants to hear about being strong and hope and crap when they have a disease like that, I wouldn’t either. Or so I imagine. So in that case, grab what feels like a solution, especially if it’s available to you, since you seem to want one. Good luck, from a random online person who means it.

augustlan's avatar

My uncle has had Hodgkin’s disease three times (the first when he was barely out of his teens), with the last two times having a pretty grim prognosis. After a lot of treatment, and a lot of weed smoking to deal with said treatment, he came out of it each time. Today, he’s alive and well and in his late 50s. Still smoking weed, too! Please don’t give up without a fight… there is so much more life waiting for you.

Nonamechick's avatar

I think that if there is a good good chance that the treatment will work then go for it but if it wont and you want to live out the rest of your days happy tell your friends and family and ask them to respect your wish and that you don’t want to live the rest of your life in a hospital bed. I hope that you can be cured tho more then anything else. my heart and prayer goes out to you.

Blueroses's avatar

It’s completely understandable that you would be reluctant to undergo painful treatments again. It seems terribly unfair that you are being asked to fight this battle twice. Whatever life decision you make for yourself, I hope you are surrounded by friends and family who will support you in the choice you make. I wish you all the best.

Bellatrix's avatar

I can’t add anything to everything that has been said here except, if you need support, and you don’t feel you can speak to family or even friends who are close to you, you can always come and talk to us here. Sometimes, you want to say something but feel you can’t because you may hurt those you love, you can ask us questions here. I hope you will fight this disease. I too suspect you are a very strong person and the world would be a sadder place without you.

krasivaya_luna's avatar

Thank you all for your kind answers and support.

I went through one of my first treatments today, not very much fun at all. I feel kind of sick and what not, but other than that I think I’ll make it!

But holy mathra, there are a lot of needles.

Bellatrix's avatar

While I am sure you aren’t feeling so wonderful right now. I am pleased to hear this news. Hope you have someone to sit there with you while you go through this.

augustlan's avatar

I’m glad to hear you’re getting started with treatments. Sorry about the needles, though! We’re pulling for you!

JilltheTooth's avatar

I’m glad you opted for treatment, welcome to Fluther, and Damn I wish I’d had Fluther when I had cancer treatments! What a great way to justufy messing about online all day! :-) Hang with us here, @krasivaya_luna , we’re pretty good company. As awful as some of the treatments were, even chemo days could be sort-of fun cuz we got away with telling some of the most tasteless (and funniest) jokes together, all of us lined up with stuff so toxic dripping into our veins that the techs wore gloves and sometimes masks while handling it! Yeah, bring it on! It just is a hugely sucky thing, but we’re here for you. The days that you feel like you’re losing hope, go ahead, we’ll carry it for you until you can pick it up again…

Pandora's avatar

I see the bitch is on her way to the fence. :D

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