219 replies to this topic

[Judy2]

Hi Laila,

This is a very hard situation. When your father says he will get it all figured out what exactly does that mean? What is his time frame? Does he know that thiings need to be figured out ASAP? You should not be waiting too long to start Tasigna. If you do and end up sick again I think at that time things will be taken out of his hands. Do you know what your WBC was at the time you were dx? When your father has calmed down please let him know that you can get Tasigna free from Novarits and let him know that there is not one person who is able to afford the medication without help from insurance, grants or the manufacturer. Maybe you could approach him with the idea that you want to help him figure things out, that the two of you are in this together, that you need and love  him and that it is hard for you to see him handle this all alone. If that doesn't work someone on the board had a good idea when they suggested that you might want to talk to a school counselor. It's really hard for me to get a grasp on the whole situation, not really understanding your family dynamics but I would encourage you to set a time limit as to when you will see your father making some progress with your situation. Do not let it go on too long, I think the ball needs to get rolling this week. I know you are scared but remember we are all here for you. Please reach out to us as often as you need to and keep us posted. WE CARE!!!

Judy

[NotJack?]

Hi again Laila,

Whew, you have a lot going on!  You are fast becoming one of my heros.  There is a lot of concern for you here, by people who just wish that there is one of us close enough to give you a hug and help you out.  Just know that we will always be here for you and try to help.  I was in a "similar" situation with insurance.  I was dx and my insurance did not cover my meds.  The rest of the folks are right, at 8,500 a 28 day cycle-- that is over 102,000 a year -- NO ONE CAN HANDLE THAT ALONE.  Tasigna gave me four months FREE.  I am sure that they would have done more. 

Through the financial counselor at my oncologist's office, they hooked me up by giving me they same info as Trey.  But, they also followed up daily to push it through.  My oncologist contacted the Novartis(Tasigna) representative, daily to get me the drug.  I could not have gotten it a quickly without the help of others!  You will have to get a EKG before going on the Tasigna.  I would contact the oncologist or his/her nurse directly, find out about the free three month supply, and get all of the information that you can. 

I am getting another blood draw on Tuesday @ 9:30 in the morning.  I will contact my cancer team about your situation--without saying where I heard it--and find out if they have to report anything to anyone if asked not to.  I don't believe that they do, but I will check.  Never mind, I will go out there Monday morning and find out for you.  I will post whatever I find out here after I get home. 

Everything turned out ok for me, although it was a stressful time.  My state, Minnesota, forced the insurance companies who operate in our state to cover we "uninsurables" at no more than 25% over what they would charge a "normal" person.  This is for people with no insurance, or people with insurance that does not cover what needs to be covered.  There was a six month waiting period for me--which they waived, and now I am covered.  You, as a minor have no waiting period.  The ocologist's office does this for all patients, because no one can pony up this kind of dough.  Hang in there and stay strong.  Jack

[Lynne D]

Hi Laila

Everyone here is very concerned. This is a great board for you to come to. There are also facebook groups you can join (closed group, no one will know) You do need to get treatment as soon as possible. There is a site that helps people strictly with CML. They can help get you the medication and get you in touch with all the right people. www.nationalcmlsociety.org

There are also a lot of Q & A on that site. You might want to even give them a call yourself and let them know the situation. You can do that in confidence. If you would like to message me anytime, I'd be happy to talk to you. I was diagnosed in 2005 and have been on Gleevec, Tasigna and Sprycel. Once you are on treatment you can at least have the relief to know you are getting the treatment you need. Without it, you will end up in the hospital again, I don't mean to scare you in any way, but does your father understand the seriousness of this disease? Maybe you can sit him down with you when you go through some of the websites so he can understand more clearly or print out the information for him to read. (leave it in the bathroom that seems where most of the material in my house gets read). I am sure he is very frightened and doesn't know how to deal with the situation. You do have to advocate for yourself if it goes on much longer though. Good luck and we are all here for you. <3

Lynne

[Laila98]

Thank you all for the replys back! I'm sure you all will be glad to hear that last night was the worst night of my life and I'm not staying with my Aunt who's already started doing all her research and making phone calls. Though now I'm not much into getting the help,,, oh well thank you all

[Laila98]

Sorry guys I meant I am NOW staying with my Aunt who's already doing her research...

[NotJack?]

Hi Laila,

I hope that you meant that you are now staying with your aunt, and she is now helping.  I believe that that is what you meant!?  If so....

I am so glad that you are getting help!  And also that you made it through a tough night.  You could have your aunt join this site  too if you want,  there are many family members who use this site for help and information.  I know that you have made a tough decision to get help,  but you made a very mature and good decision!  Your dad will come around, he is just feeling a bit of guilt.  This whole thing can be overwhelming for any person with CML, let alone someone in your position.  I will check tomorrow at my onc for info,  again your oncologists office is one of the best resources for you and your aunt.   Keep posting,  Jack

[Laila98]

Thanks Jack, I did mean now typo sorry. Thanks for looking into the information for me, I don't have a oncologist yet but my Aunt is looking into all that now as I type.. it's very overwhelming and I wish it'd be over... she did go fill the hydrea for me today though, I just took my first dosage now I'm even more tired then I was before.... talk soon

[Lynne D]

Very glad to hear it Laila! You need to be taken care of and get all the correct information that you can to help you understand what is going on. I'm sorry you had a rough night, but I am very glad your Aunt is helping you.

Lynne

[NotJack?]

It will be scary for a little while your blood counts are tested and watched. You will get an EKG, then take the Tasigna, then another EKG.  The EKG is not a big deal.  They will take your blood fairly often until they get back to our normal, make friends with the best blood taker, and try to get them every time.  I did not see where you are from, but if you told people which state you are in, you will get good referrals of great oncologists near you.  Hope that that helps.  It will take a good 3 mo for everything to settle out, but it will, and then things will get a lot less scary.  Hang in there, Jack

[Tedsey]

Dear Laila,

I am so sorry to hear about your diagnosis.  And as a minor, you are in a difficult situation.  My heart goes out for what you have been through.  But you seem smart for your age.  You can persevere.  My childhood was similar where there were no adults I could trust or talk to.  I am so glad you have your aunt and she is helping you.  Surrounding yourself with people you feel are reciprocal in their love and concern is essential right now.  I think you are taking the right steps.     

There is hope to live a long life with CML.  The time you are diagnosed is the absolute worst.  But the panic you feel in the beginning gets less and less.  I am sure someone said this to you, but try to stay away from surfing the Internet.  It may needlessly scare you.  There is a lot of info. out there that is out-dated or just wrong.  You will learn enough right now from this site and your doctors.

My mother left me too, but it was easier because I never knew her, (I met her for the first time when I was 34; she does not want a relationship now).  It is hard to grow up or enter adulthood without a mother's loving influence.  But, you can find other women who will love and care about you along the way.  It may not be the way you want it, and I hope deep in my heart your mother will want you to be a part of your life again, but you can be OK and have a good and happy life. 

I am here to talk to if you ever need.

Tedsey 

[Judy2]

Hi Laila,

I am so glad you are staying with your aunt and you are now beginning medicine. Remember, you need to be under an oncologists care while you take these meds as you will have to have your blood monitored. I think you said you were from Michigan. Is that correct? I think some of the best CML specialists practice there. Trey, if you are reading this will you give Laila some names? Laila, if you want I will be glad to talk to your aunt and give her any advice I can. Just private message me and let me know if this will be helpful for you. Remember, you have a million aunts, mothers, uncles and fathers on this board. We are all here for you and will help in any way we can.

Hugs,

Judy

[sunflower]

Laila, when you get a chance go to this site http://www.patientas...information.jsp they will help you get Tasigna for free. I'm glad you are now staying with your aunt, who seems supportive.

[jjg]

Hey Laila, I'm so glad you made the big move AND that you are on the hydrea. You are doing "awesome", hang in there!!! Josie

[Laila98]

thank you all! I knew you'd be glad about the move but I feel horrible for how everything went down... just more stress on me. Yeah I live in Mi and i already spent last night reading about stuff and i've cried all day.... it says 5 yrs or at max 30??? I don't want to be mid 40's at the latest when i die ... I'm so scared, I even read it on treys blog thing and being in an accelorated phase i'm scared it'll be shorter....

[sunflower]

Only God knows when it will be our time, have faith in Him. If you would like someone to talk to either by private message or phone, i'm open. You can private message me for my number. I am a counselor by career but I also have CML. If nothing else, I can listen lol

[jjg]

Hi Laila,

5 years is for most of us just old news, ignore it. 30 years is an estimate based on current treatment, no reason to expect they will not improve treatment in the next 30 years, in fact it has already been improved since that estimate was made.

Accelerated phase is a complication. What makes you think that you are in accel phase - it's not a simple matter to diagnose somebody in this phase. Before you start stressing big time about accel phase you'd want to have an experienced CML hematologist on your case telling you that you are in fact in accel phase. Even if you are then you can be brought back to chronic phase. I know this is impossible but try not to stress about it yet. I'm sure that it is late where you are and you are very tired. Try to rest.

Josie

[Judy2]

Hi Laila,

First, be very careful what you read on the Internet as there is a lot of outdated info out there. Do not listen to the 5 year figure, that was before the medicines we have now. There are great strides being made with our disease. As a matter of fact, there are 2 new medicines coming out this year and there is talk of a cure on the horizon. I believe by the time you are in your late thirties there will be a cure. Laila, you will have a  long life and a good quality of life. It can be a rocky road at first, adjusting to the medicine and all, but you will get through it. Just remember, there is a lot of outdated info on the Internet so be careful of what you read,

Hugs,

Judy

[Susan61]

Hi Laila:  If you were diagnosed back in the 80's or 90's then your life expectancy would have been 10 years to 30 years.  You might have read some old information.  Since the TKI drugs came into use in 2000, it has changed the whole way CML is treated now.  That is why we are so glad you are on the Hydrea to start things off.  When I was diagnosed in 1998 and the old treatment I was on did not work.  I was on Hydrea for over a year before I was able to go into the clinical trial for the Gleevec, and thats how I got through it. 

     I am sure your Aunt will get some good answers for you about getting the Tasigna for you.  Its true that only God knows how long we will live.  Nobody is promised a tomorrow even if they are healthy.  Do not dwell on that, just be happy that your finally on the right track now that your with your Aunt.  Go slow, and let it all fall into place for you.

So much happened over the weekend with you moving in with your Aunt.  Give her time to get everything in order.

    We all cryed when we were first diagnosed.  IT is a very scary thing, but it gets better.  Please keep talking to all of us, and I do hope your Aunt joins in after awhile if she wants to get some more information from those of us who Live With CML Everyday.