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A blog about having CML as a teenager.

cml teenager

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#1 maddison-smith

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Posted 11 August 2014 - 10:40 PM

Hi all!

I am a 17y.o with CML, was diagnosed back in 2009.
I often see parents who have children with CML and have questions about the treatment or the journey. Sometimes doctors just can't give you the information you need.

I created a blog to tell stories of my journey in a way that gives insight to parents who have kids with CML, or for patients who are interested in hearing my version of events from a teenagers perspective.

 

So if there is any parents who have any questions I may be able to answer, ask away. It's good to share knowledge.

here's a link to my blog: http://maddisonsmind.wordpress.com/
 

 

 



#2 Pin

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Posted 12 August 2014 - 02:06 AM

Hi Maddison,

 

Great to meet you! :) Gerry tipped us off about your blog yesterday, so I had a read and commented on one of the blog posts. I've been feeling really down lately and have been in a bit of pain, so it was really helpful for me to read what you had to say yesterday. I especially liked the 'tablets' post. Some days can get pretty frustrating with all the things we have to deal with, but in the end there is not a lot we can do, and fighting it mostly makes me feel worse. So next time I feel down I will, like you, take my tablets and remind myself that even thought I hurt, they are saving my life.

 

I hope your hip is healing up well, that's a difficult thing to go through at such a young age, I'm sure you're sick of hearing people say that though.

 

Cheers,

Pin.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#3 tiredblood

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Posted 12 August 2014 - 01:26 PM

Thank you for sharing your story.  I've taken a picture of each box of meds when I've gotten them in the mail, but never thought about a picture of the used containers.  I, too, dislike taking pills.  I'm on nilotinib which you have to take on an empty stomach twice daily.  So in a way, you have to plan your day around taking the pills.  I took the picture with the first shipment because it hit me hard when I opened the box and saw that bag with the chemotherapy warning symbol, and it was for me!  I'm used to caring for patients, not being the patient.

It seems like I'm always throwing away an empty box.



#4 maddison-smith

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Posted 12 August 2014 - 06:40 PM

I sometimes wish that I would never have to take another tablet, but I think we all know that's unreasonable. However I'm currently not taking any Glivec (since May) and my numbers are still at 0.000 so maybe one day stopping these meds forever won't be so unreasonable.

 

Pin, I'm glad that I could help remind you to keep solidering on. Nothing like a little poke of positivity to keep you fighting every day. :) My hip is healing well, still limping but no pain anymore. Just the pain of keeping up with the physio..
 

Tiredblood, I keep telling my mum I refuse to change to Nilotnib. One tablet before bed is bad enough, let alone twice a day, before food. But we say in the end, what happens, happens and we'll find a way to make it work. So I hope that you've got a routine that makes it as easy on you as possible. I also know what you mean about always throwing away a box. They keep appearing out of no where!

Keep an eye on my blog because I'll be posting a post in the next few days or so which is a letter I wrote to my mum about her always sitting by me when I'm sick and how much I appreciate it.

If you're used to being the carer, it might give you some insight to how the caree feels about your support.

 



#5 gerry

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Posted 13 August 2014 - 11:14 PM

Good luck with your cessation are you doing it under the Adelaide trial with Dr Hughes or with your doc?



#6 maddison-smith

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Posted 13 August 2014 - 11:26 PM

Hey Gerry,

 

It's just with my doc that I'm doing it with. All the stopping trial are for adults, which I am not quite yet.. She just keeps an eye on my results and my blood tests I get every month. If it raises to 0.1, she'll start me again on Glivec. But for now, it's just a watch and wait. :)



#7 gerry

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Posted 13 August 2014 - 11:32 PM

I stopped Nov last year. I'm slightly more relaxed about things since I got through the first six months of stopping. Side effects are gradually disappearing, though still waiting on the muscle and joint issues to go.



#8 maddison-smith

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Posted 17 August 2014 - 07:26 AM

I'm not worried about my cells rising. All I hope for is that they stay low, that way maybe I can move on from monthly blood tests.. I'm needle phobic. As in 10mg of Valium does nothing to calm me.. I'm still waiting for the sleepiness to pass, but I'm thinking something else might be contributing to that.

I made a Facebook page for my blog, to make it easier to keep in touch with it.
https://facebook.com/maddisonsmind

Check it out and give it a like to see posts on your news feed :)



#9 gerry

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Posted 18 August 2014 - 07:00 PM

Usually when you get past the six months they can move your blood tests out a bit more. I was on six weekly when I started, now at every 2 months. If I stay negative it will become six monthly.







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