72 replies to this topic

[rcase13]

That was me! 260,000.

Your doing fine. The Gleevec will take you the rest of the way.

I was at 264k and within a week I was down to 45k but I was in the hospital on IV and very large doses of Hydrea. The dose was so high my liver enzymes rapidly climbed past normal. They then stopped the Hydrea and started me on Tasigna. Two weeks later my WBC was normal. Gleevic will do the same for you. Once you get use to Gleevec and understand how to live with the side affects you can then start a normal life. School, work whatever you want to do. Just be sure to check in every now and then!

[Gail's]

I think your WBC drop is terrific for just a few weeks. I had the same amazing drop. We're blessed to have these drugs. At least I tell myself that at 3 AM when I've made my fourth running trip to the bathroom!

[Risen]

So my mom just got a call from the one oncologist's office, apparently my bloodwork from yesterday says my WBC is back up to 137,000.

 

I'm a little freaked out right now, is this normal?

[rcase13]

Others a lot smarter than me will chime in but it probably just means a change in meds will be necessary. Some people don't respond to some drugs that is why we have so many to choose from.

[Trey]

This is one of many reasons why I dislike Hydroxyurea (HU) for CML treatment  You do not know which drug has done what at this point.  The HU did something and the Gleevec did another something and you don't know which caused what.  So I would wait for another CBC to see where a WBC trend starts forming. 

[lehrerin]

Risen,   You are NOT alone.....my daughter is now 16, and was diagnosed when she was just 11 years old.  She has been on Gleevec, 400 mg TWICE A DAY.   Her initial WBC count was not as high as yours is, but she is doing just fine, although still not undetectable.   She has a normal, regular life, going to high school, competing on the swim team, and being camp staff during the summer.  After starting out going to the pediatric oncology unit twice a week, she now goes only every 6 months.

 

It WILL get better   {{hugs}}

[Risen]

Thanks guys.

[Risen]

Risen,   You are NOT alone.....my daughter is now 16, and was diagnosed when she was just 11 years old.  She has been on Gleevec, 400 mg TWICE A DAY.   Her initial WBC count was not as high as yours is, but she is doing just fine, although still not undetectable.   She has a normal, regular life, going to high school, competing on the swim team, and being camp staff during the summer.  After starting out going to the pediatric oncology unit twice a week, she now goes only every 6 months.

 

It WILL get better   {{hugs}}

Lehrerin, I really appreciate the comment, it's good to know that I'm not the only younger person with CML, I obviously knew, but it's so far and few between I haven't actually met anyone around my age, on the internet or elsewhere, with CML.

I'm glad to hear she's doing good after 5 years of having it. I may also have to be bumped up to twice a day considering my raised WBC. I'm no doctor, so I have obviously no idea, Lol. 

 

Things are alot different for me than they were before, I've struggled with depression for many, many years. It pushed me to the point where I didn't want to see my friends, leave my house, or even get out of bed in the morning. I was so behind on my school work and everything else that I was held back enough times, that I dropped out. I was at pretty much my lowest point right before I was diagnosed. And as odd as it sounds, the CML seems to have majorly helped my depression. It changed my entire perspective on everything. I never really knew how much everyone around me really cared, or how much I need to appreciate what I have. I would never want to go back to what I had before.

 

I'm still pretty stressed out most of the time, and have alot of trouble keeping my mind off of every little ache and pain, most of which are probably completely normal. It's been a roller coaster ride of emotions and stress levels. But things are looking up for me, I'm now determined to get my life together and move on with it. So I hope in 5 years from now, I can be doing whatever I love at the time, and be doing it just as good as anyone else, just like your daughter.

[Billie Murawski]

Hi Risen,

 Your attitude is amazing, I think I can speak for the whole group, saying we are all very proud of you. Depression is a horrible disease many of us understand that. I think once the initial shock of dx and getting used to your meds and seeing your blood counts go down you'll have the energy to turn your life around. Set some goals for yourself, like getting your diploma, you will feel so good about yourself when you do that. My son hated school and just barely graduated but I told him he was going to graduate if he had to stay in school until he was 35. And I meant it! So he did graduate when he was 18 and thanked me for threatening him all his life. Of course the first thing I did was grab his diploma and make sure it was signed. Keep that positive attitude and do things that make you feel good about yourself. All the little things add up take a walk make your bed,volunteer work is great!    Billie

[lehrerin]

Risen,  if you are increased to 400 mg twice a day, the side effects may become troublesome.   LMK and I will give you a list of things to clear with your doctor that have helped minimze the side effects.   I am still trying to figure out the new forum (which is probably old, but I don't get on more than a few times a  year).....you can just private message me if you want.  

 

There is also a facebook group for children with CML.   I know you are not a child, but they might offer some support and help.   I don't participate, because my daughter prefers that most people do NOT know of her diagnosis.    Putting it out there on FB would be like shouting it to the world.  

 

Are you treated at an adult or pediatric center?   I only ask because my daughter will stay with the pediatric oncology clinic until she is 35 years old, then will transition to the adult center....but her doctors assure me that she will be cured before she needs to transition to the adult center.  

 

Try to remember we care about you!   Get up every day, take a walk outside, and BREATHE.   I agree with Billie, maybe volunteer somewhere for a while.   {{hugs}} to you AND your mom.   

[Risen]

Risen,  if you are increased to 400 mg twice a day, the side effects may become troublesome.   LMK and I will give you a list of things to clear with your doctor that have helped minimze the side effects.   I am still trying to figure out the new forum (which is probably old, but I don't get on more than a few times a  year).....you can just private message me if you want.  

 

There is also a facebook group for children with CML.   I know you are not a child, but they might offer some support and help.   I don't participate, because my daughter prefers that most people do NOT know of her diagnosis.    Putting it out there on FB would be like shouting it to the world.  

 

Are you treated at an adult or pediatric center?   I only ask because my daughter will stay with the pediatric oncology clinic until she is 35 years old, then will transition to the adult center....but her doctors assure me that she will be cured before she needs to transition to the adult center.  

 

Try to remember we care about you!   Get up every day, take a walk outside, and BREATHE.   I agree with Billie, maybe volunteer somewhere for a while.   {{hugs}} to you AND your mom.   

 

I appreciate it, alot. I'll let you know when we go back (Thursday) what's going on with the dosage. I would have also preferred to just not tell anyone, but my mother and my grandmother are terrible when it comes to not telling people things, Lol. By now pretty much everyone I know, knows. But it's not that bad I guess, everyone's so supportive it makes it easier, for me atleast, to tell people. The only thing I don't want is for people to treat me different, which has happened.

 

I'm at an adult center, they asked me if I would want to be treated at the Children's Cancer Center, I decided to just stay. It's a pain getting there for me, though. We live in a farm town about an hour from the center, which is in Pittsburgh.

 

I'm pretty confident that someone will come up with a cure within 29 years. Reading about all of the medical breakthroughs that have happened just in the passed 10 years in terms of fighting Cancer/Leukemia, I have very few doubts in mind that something so controllable is not at the tipping point of being cured.

 

And thanks to you too Billie, I'm already working on some of the things to get everything straightened out. I have an appointment at my regular Doctor's, so I'm going to ask if it's possible to get my physical cleared to move onto getting my permit. Then sometime either toward the end of this week pr the beginning of next, I'm going to apply at Walmart for part-time. I gotta start somewhere, Lol.

[Jamie2015]

I appreciate it, alot. I'll let you know when we go back (Thursday) what's going on with the dosage. I would have also preferred to just not tell anyone, but my mother and my grandmother are terrible when it comes to not telling people things, Lol. By now pretty much everyone I know, knows. But it's not that bad I guess, everyone's so supportive it makes it easier, for me atleast, to tell people. The only thing I don't want is for people to treat me different, which has happened.

I'm at an adult center, they asked me if I would want to be treated at the Children's Cancer Center, I decided to just stay. It's a pain getting there for me, though. We live in a farm town about an hour from the center, which is in Pittsburgh.

I'm pretty confident that someone will come up with a cure within 29 years. Reading about all of the medical breakthroughs that have happened just in the passed 10 years in terms of fighting Cancer/Leukemia, I have very few doubts in mind that something so controllable is not at the tipping point of being cured.

And thanks to you too Billie, I'm already working on some of the things to get everything straightened out. I have an appointment at my regular Doctor's, so I'm going to ask if it's possible to get my physical cleared to move onto getting my permit. Then sometime either toward the end of this week pr the beginning of next, I'm going to apply at Walmart for part-time. I gotta start somewhere, Lol.

Hey Risen!
Just wanted to let you know I am 22 years old so I know where you are coming from! When you think your life is beginning and someone puts your life timer in your hand and starts the button it's horribly scary! I have faith that some genius will find a cure and we will not be taking these pills for the rest of our lives!

Hang in there!!

[Billie Murawski]

Hi Risen, It sure does sound like you're getting your prioritys straight, you'll feel so independent when you start driving I can't think of any reason why you can't get your permit. Trust me if they haven't taken my license yet anybody can drive. A part time job will be perfect for you, there won't be any time for cml. And like Jamie said a cure is right around the corner I truly believe that.

 I live in Pa too, right along the lake it's supposed to start warming up pretty soon. I can't wait to get outside!

                                                             Take care Billie