219 replies to this topic

[Laila98]

I was diagnosed on feb 7th 2012 with CML and very scared. I don't really understand everything that's going on and reading about it makes me cry more then already do. I got some numbers for help because I have no insurance, I'm a student and my dad was suppose to have insurance for me but I guess didnt? So here I am wondering wth I'm gonna do since the doctor wants me to take tasigna but it's expensive and I obviously can not afford it. My dad said he is going to figure something out but I'm sitting here crying because I don't want to die while he's trying to "figure it out". I guess I just wanted to say I was new to the site and just looking for some friends for support. My mom left a few years ago so it's just my dad and me and he's not very sensative, he just keeps telling me to stop crying and he'll "figure it out".  He told me not to tell my friends or family so people don't treat me any differently, that we are not a charity case and don't need any attention from others. Am I abnormal to cry? Am I abnormal period now? He makes me feel like a leapord, does anyone else feel "different"? I am lonely and confused.... hope I can become apart of ya'll and close like ya'll see to be..

xo Laila

[jjg]

HI Laila,

Firstly I'm sorry about your diagnosis, it's very early on for you and entirely normal for you to be scared. I didn't cry  at first but I did cry later. It's good for you!!!! You are still just as much a normal human as you were before dx and most normal humans need comfort when things go wrong, even if they don't/can't admit it. The chances are your Dad is crying inside for you but doesn't know how to let it out.

I'm not from the US so I can't tell you much about how the insurance/drug access works but people do seem to get it sorted out. Does your doc know about your insurance issues?

In the first year CML has made me feel tired and sometimes not so well but most days I'm able to get out there and run, ride or swim. Sometimes when I'm running people tell me how fit I look.

I'm older than you, late 30s but there are quite a few younger ones (& older ones) on the boards. I hope we can help you out.

Hugs

Josie

[sandimartini47]

Hi Laila,

You feel just like most of us did when we were first diagosed even though the doctors told us it would be okay.  I was diagnosed with cml in September 2008 and was put on gleevec.  Well, I am now starting my 4th  year on one pill a day and am doing very well.  Did I have some side effects, yes but nothing that I cannot deal with.  My hands and feet cramp up and sometimes I get bone pain; every once in awhile I am nauseous after I take my pill but I am doing very well.  I also get tired but I am basically doing everything that I did before I was diagnosed.  I have a very busy, full life.

It takes awhile to get use to the medicine but I feel better now than I have in a long time.  As upsetting as it is, we are very lucky to have the drugs that are available to us because we can (some experts say) live a normal life span.

IT WILL BE OKAY!!  Take it from someone who has gone through it.  Yes, the insurance thing has to be taken care of but once you get that straightened around, you will get into a routine, going to see your oncologist every couple of month, getting your blood work and taking your medicine while living your life.

This site it extremely helpful for all of us; it helped me get through my first year or so.  I don't know how I would have gotten through it without the support and advice from so many great cmlers on this site. 

Try not to feel lonely because we are all there for you.  Any questions, just ask.  Anytime you just feel like venting, just vent.  Anytime you want support, we are there.  Bless you, it will be okay, sandi

[Laila98]

Thank you for responding and for the hope. I know my dad is hurting on the inside too but like I don't know it's scary for me too. He made me feel bad because I had to get the biopsy and then I was admitted to the hospital because my labs were so bad I guess.  it's all out of pocket and like I chose to have this ilness or something... Like it's not like I went out and got preganant. I hope he figures it out and all is well cause I'm scared if I don't get on the meds I will go into blast stage. I wish he'd let me tell my Auntie so I could talk to someone about it and have that "motherly" hug from her.... oh wells. thank you again for replying and letting me vent

[Judy2]

Hi Laila,

A everyone says, welcome to the club nobody wants to join. It is very scary to be told you have CML, it would be abnormal if you didn't feel scared at first. I was dx last May and still have periods of time when I feel overwhelmed and cry. Please remember that we are all here for you, you do not have to go through this alone. You will get lots of good info from this group and a ton of support. If you call Novarits and tell them  you are uninsured and have an income below a certain level they will supply you with Tasigna free of charge. When you first call, if your onc sends them in a prescription, they will send you your first  month of medicine right away. Then they will send you 3 more months worth,  one month at a time, while you apply to their program. Once you qualify they will continue sending you the medicine. Once you get insured they will help to find you a co-pay org., that is an organization that will supplement your ins. with a grant if your ins. doesn't pick up the full amount. Hopefully you are at a cancer center or hospital that will help you out with the details. If not just call Novartis yourself and tell them your situation.

Laila, remember, you are not abnormal to have CML, you are not abnormal to have the feelings you are having, and if others treat you differently because of your CML, well they were not worth having as friends anyway. Remember, you will have a normal life span and a good quality of life. It takes time to get adjusted to the dx and the medicine but you will adjust. Post as often as you want and remember, we are all here for you.

Judy

[Laila98]

Thank you Judy! I'm glad I was informed about this site for help. I actually don't have a set oncologist yet, I went and saw one but again until it gets figured out I was told we are not going back for now. I don't know I wont go further into that I don't want it looking bad on my dad he tries. I did tell him to call them and Amy from LLS CML chat gave me some phone numbers and information last night to try and get help... I gave them to him but I don't want to make him mad,

[Susan61]

Hi Laila:  You are going through all the normal feelings that we all had when diagnosed.  First you have to talk to your Dad, and tell him that you have been on the Leukemia Discussion Board to get some help and consolation.

You sound very young, and very smart also.  Tell him you would feel better if you had a woman to talk to, and really need to talk to your Aunt.  Let him know that Charity is okay, and especially now when the economy is so bad. People who were very well off have fallen into the poor category now and reaching out wherever they can for help financially.

Your Dad probably worked hard, and fell into some hard times. Let him know its okay to take Charity if you can get it.

If you contact the drug company and fill out the paperwork showing your income and no insurance, they will probably approve you for free Tasigna.

     Your Dad is hurting, and maybe not thinking straight as to which way to go.  Its okay to share what you are going through.  ITs not a pity party, just love and concern for one another.  Thats why we have so many people on here to talk to and get help.  We have all made good friends on here.  Please try to show him how people reach out to one another.

     You just got your diagnosis, and its a lot to sink in at first.

     You will be okay, but you need to get started on your treatment.  I have been living with CML since 1998, and I am on Gleevec which is made by the same drug company as Tasigna.  Contact Novartis and ask them for help.

    Please keep in touch with us.  There is someone available almost all day and night.  We all get on at different times, but you will get a answer always.  I pray that everything starts to fall into place for you.

Susan

[Judy2]

Hi Laila,

Remember, hospitals have ways of helping uninsured people with their office visits, etc... I  understand your father is probably scared too but let him know their is help out there for the uninsured. Let him you know you love him and that you appreciate everything he does for you but right now things have to happen in a timely manner. Know you will get it all worked out but while you are working on it you should be under the care of an onc. Perhaps you could get the name of a social worker at the hospital you were at and she could explain things to him. It often helps to have an outside person explain things, sometimes an outside person is more objective and is better able to handle the situation than a close family member. Keep us posted and please take advantage of all resources that are available to you.

Judy

[Trey]

Laila,

The CML Chat folks probably gave you some good advice.  The drug makers are good at helping those who need assistance. 

Here is the Tasigna assistance site:

http://www.us.tasign...-assistance.jsp

The L&LS provides some financial assistance:

http://www.lls.org/d...tance/patients/

You can get help from these folks.  They really will help you. 

[Laila98]

thanks ya'll. I don't know if they will talk to me though because I'm not 18 yet. I don't want to call the hospital social worker because i'm afraid they will put my dad like in investigation or make me leave home and I don't want that to happen. He does know i got on the chat last night he was ok with that, I don't want to tell him about the discussion board because he'll get mad and i don't want him mad at me and take away the one thing that I hope can help me. I gave him some information that social workers from the chat gave and then what ya'll have given me I said I was doing research but he just tells me to stop that he is going to get this straight and I need to stop looking everything up it's not my place, that "I'm the kid and he's the adult."  I can understand that if it was him that had CML though like I don't get what I have and I want to learn more and be helped. Heck they pput me in the hospital for a week beacuse my mumbers were so bad and I guess I'm like accelorated or something. I don't want to make him mad  I just wanna place to escape to so I can have support,

[Trey]

Well, I would suggest that you just give your Dad the phone numbers and website information and have him call.  Maybe you could both be on the call at the same time.  He wants to help you, so try to help him.

[Happycat]

Laila,

Welcome, my dear, although I am heartily sorry to see you here. You are so young to be dealing with this. But you'll get through it. You may doubt that now and then, but you'll get through it.

I'm sure your dad is kicking himself now because of the insurance thing, and he's just trying to make it right for you. Do what you must do to manage the situation, but I hope you continue to come here so you will have a place to talk and vent. It would be good for you to have that mom figure for comfort. Perhaps if you told your dad that, he would understand?

Traci

[Laila98]

thank you Traci, I hope everyone is right and it just get's better. I rather not tell my dad I want a mom figure right now, I don't want to hurt his feelings or make him mad. He thinks I'm like 5 and dumb so he keeps telling me my mom will come back one day and I've heard him upset enough and blam himself enough for why she left that I rather not make him think I want her. She can stay gone for all I care, she left me... I know why she left my dad but she left me too but anyways... I don't want to make him mad, I rather just let it be what it is and deal with it..

[sunflower]

Laila,

Sorry for what you're going through. I would encourage you to express to your dad that you need the support of family and friends right now. It's hard to go through this thing alone. Hopefully he would understand.

[AmyH]

Hi Laila. 

I was just diagnosed on January 5th.  It is so scary and it is okay to cry!  I cried so much in those first few weeks.  I thought 30 was young, but you are even younger and I'm so sorry you have to go through this.    *hugs* for you.  I wish I could be there for you in person. 

Definitely provide the information you were given to your dad so he knows there is help out there.  You can't be scared that he is going to get mad.  He is probably just really upset right now and doesn't understand how to "fix" everything.  I know with men they tend to like to fix things and this is one thing that is out of his control and he is probably especially worried since you don't have insurance.  You really need your medication though so please please please give him the information! 

I will be praying for you Laila.  I wish you all the best.  This site is awesome for information too so feel free to ask questions! 

~Amy

[jrsboo]

Dear Laila,

Is there someone at school, a counselor, or other adult that you can talk to?  Being diagnosed with Leukemia is a huge shock.  Any feeling that you are feeling is acceptable.  You should not go through this alone. 

Sometimes people, especially men, see an illness as some sort of weakness.  They don't understand that allowing others to help us, not only gets us the dire help we need, but allows other people to feel needed (one of the most basic needs out there), and it makes them feel good to help.

Do you belong to a church or other religious organization?  Is there an adult there you can consult with?  Perhaps even if you don't go to a specific organization you can still talk to a priest or rabbi about this. 

It is only three days since diagnosis, so lots of things are up in the air.  I hope things get untangled quickly for you.

Caroline

[Laila98]

Thank you Amy! I've tried to talk to him today but he just says he doesn't want the family knowing so to keep my mouth shut until he get's it figured out. That he will take care of it and then I knew I upset him because he told me that if I don't want to trust him and be like my mom then I can get the heck out of his house just like she did... just not that nicely, so i knew it was time for me to just go in my room, so I'm on here now thankful that I have support :-)

[Laila98]

I have school councelors but I can't tell them about this!! They are the school they would call someone and then daddy would be very mad that I had sad something to someone. I just want to hopefully get some emotional help and answeres when I'm confused about things on here, I know ya'll are just trying to help but I can't tell anyone I know... I just can't.

[HPL]

Hi Laila,

First of all, I hope you don't feel abnormal. In fact, I would bet that if you walked down the street and a bunch of people from the board walked bye, you wouldn't be able to pick the CML folks out from the non-CML folks. CML is very managable, and there are some excellent drug choises out there. You are going through the worse part of your journey, the shock, the realization, all the emotional aspects. It does get better, everyone on the board at some point went through some flavor of those emotions. So you are perfectly normal in fact. The only difference is that you have a mutation in your cells, that for lack of a better medical explanation enables you to produce large amount of blood cells. I always thought that if I had to get some kind of super hero mutation, I'd hope it would have been a heck of a lot better than being able to produce white cells

There are also local connection groups, or resources that may be of help to you. But this community here is awesome, and you have come to the right place. You are not alone, you may have started the journey alone and scared, but you'll finish with a heck of a lot of supportive friends and more knowledge than you ever cared to know..

Regards,

Hans - Woodinville, WA

Zavie's Club # 1303

[Susan61]

Hi Laila:  I feel very bad for you, and  I do not want to interfere in your problems with your Dad, but I think you need to talk to someone about this.  There is more to what is going on then just him hurting and trying to figure things out. Telling you to keep your mouth shut instead of giving you some moral support does not sit right with me.

Your very young, and you need to go talk to somebody.  If nothing gets done to get you on that Tasigna, then you better go talk to your Aunt.  I cannot help but wonder why your mother has not kept in touch with you, no matter what happened with your father.  ITs none of my business, but I am very concerned about you.

     Please keep in touch with all of us, and if you have to reach out to someone close to you please do it!!!!

     I hope I am not speaking out of turn here, but you are not old enough to go take matters into your own hands at this point.  Its a lot to take care of even as adults.  I still feel your going to be okay, and once you get on the Tasigna you will start to feel better.

    I am always here, and you can send me a personal message anytime if  you would like to.

Susan