My daughter was diagnosed this year, June 3rd 2016 with CML after going to the hospital with what we thought was an injured hip. Her wbc was 340,000 and is currently in normal range 5,000. She takes her meds which is 250mg at night around 10pm. About 3 hours later on the dot she awakens crying and screaming with intense ankle, knee and sometimes all over body pain. She has also been bouncing around body temperate wise from 98.3 to 100.8 (100s rarely, usually in the 99 range) doctors are thinking of switching her but she's only been on it for around 6 weeks I'd like to wait and see if it subsides I don't want to trade a drug that is working for another drug that might have even worse or same side effects. I know bone pain is common and my question is does anyone split their dose? I'm curious if maybe we did half at night, half in the morning it might decrease the sudden impact bone pain and perhaps the fever. I feel awful for her she gets next to no sleep every night and begins to act normal and with no pain a few hours before her nightly dose. Thank you all take care!
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6 year old with imatinib bone pain
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Hi,
That sounds really distressing, especially for such a young little girl.
I had terrible bone pain with imatinib. Mainly in my legs. It was very achy, but with a very sharp stabbing pain that would come and go (all too often it would come) - really too much to bear. Worth noting that I didn't seem to have it worse shortly after taking imatinib, it was there all day.
We weren't sure if this was imatinib's fault, so with my doctor we decided to stop taking the medication for 2 weeks. The going in theory was if it was solely the imitinib causing it (rather than the disease itself) then it ought to subside in about 4-5 days. On the 5th day I had no pain left.
So, I switched to dasatinib and have never had that pain since.
I guess everyone is different, but it might be worth discussing with the doctor if it is worth stopping taking the drugs for a short time to see if it is definitely the drug itself causing it. If it is, then that gives you real information to make decisions with.
David.
Hi
First thing that jumped out of your post was the date of 3rd June, I say this as that was the date I was diagnosed but in 2013! The other thing that stood out was how tough it must be for you all with your little girl being just 6.
What your experiencing regarding the bone/joint pain can be experienced quite commonly early on in treatment for many of us, the important thing is in the vast majority these issues seem to settle in the first few months. In fact I have heard of some CML'ers that noticed these issues dissapear exactly 3 months in, like someone had flicked a switch. Personally I started on Imatinib and had the hip/ knee/ bone pain and swelling also. The key thing is, I was 33 year old man when I was diagnosed so it was easier for me than for you guys!
Regarding the dose and time taken, your first point of contact should be your clinical team, you should make them aware of the issues your little girl is having for some expert feedback. It may be suggested by your clinical team that she takes her medication earlier with a meal? That way if she has the episodes which you can time your watch by, she won't be having them through the night. She will need her rest, and the fact she is waken up in pain me disrupting her much needed sleep hours, which in turn will be a negative cycle perhaps. Also we all know that things are much worse when your poorly through the night, you can feel isolated like your out of office hours for support which in turn can be isolating. As for the dose splitting I haven't much experience with splitting doses and it must be borne in mind that all Tyrosine Kinase Inhibitor (The standard treatment for CML referred to as TKI's) have different requirements so you must speak to your team regarding this for direction.
One thing I would maybe suggest is you start a diary of where your daughter's pain is and how long into treatment it occurred etc. This maybe beneficial when you speak to her team at appointments and serve as a tool to reflect upon should she switch in the very distant future and will not recall her experience from when she was 6. Just a thought.
Just to stress these things do seem to settle in the months that follow for the vast majority of people. She is a little trooper!
Obviously I am no medical professional, and therefore this is just my experience as a fellow CML'er. I just wanted to make you feel that you were not alone in the short term and this forum and site is a valuable resource for many.
I am sure other people will be along soon with their stories and support.
Kind regards,
John
It must be so hard to watch your child so distressed by what is a very common side effect of imatinib. I, like David and others, found the bone/muscle pain and cramps quite difficult to tolerate for the first 12 weeks of my treatment and like David they were constant. I found that movement and stretching my legs almost the only way that I could find relief, but I also found direct heat (either a heat pad or hot water bottle) really helped - especially at night. At 12 weeks the constant aches and pains disappeared, virtually overnight and I was very grateful for that. Over the next few months and years (I took immunity for 3 years) I found supplementing magnesium really helped with the muscle cramping and general joint aches. If you are not prepared to change her to another TKI just yet then you could try massaging her legs with magnesium oil which comes in a cream base for sensitive skin and use in children see link here:
http://www.ancient-minerals.com/products/magnesium-lotion/ and http://www.ancient-minerals.com/transdermal-magnesium/
or here: http://wellnessmama.com/5804/make-your-own-magnesium-oil/
.... OR you could just massage her legs with warm oil (coconut oil is good for this) and make sure her muscles are kept warm.
As David has said dasatinib does not seem to have this as a side effect so another TKI (depending on your access issues) may be the answer. Dasatinib is well tolerated by most people and is very effective in controlling the disease.
See the article on our featured boxes on the 7 year data of one of the dasatinb trials. I am not sure what the dose would be for a child of 6 but I understand that it is very easy to take and will easily fit in to a daily routine.
I hope you can find a way to give her some relief, please update us on her progress.
Sandy
I am so sorry to read about your little girl. It must be awful to watch her suffering like this. I can't really add anything that hasn't already been said, other than phone your daughter's consultant to talk over the problem. He/She's the one to ask about splitting the dose.
I so hope this improves so the little one (and you) can get some sleep.
There is a facebook group for adults with children with CML who may be of help to you. I know of at least one father whose daughter is only 3 years old.
Best wishes,
Chrissie
I have a funny feeling dasatinib isn't licensed outside of trials for paediatric use. I may well wrong, but I know it's not as simple as adult choices of treatment. I think imatinib is the only TKI approved for paediatric use. (I MIGHT BE WRONG!).
Blood journal has a very interesting article comparing TKIs and the benefits of transplant in the very young - since transplants are much more successful in that cohort there's a more nuanced case to be made to go for the transplant route than the TKI route.
This article discusses a 1 year old. Clearly an outlier case, but even so out of an already rare disease only 3% of paediatric leukaemia are CML so it's hard to be representative. It's a few years old, so perhaps things have moved on.
http://www.bloodjournal.org/content/119/8/1821
David.
Hello from Ireland
I haven't posted here before but I am a mother to a 6 year old patient and yes she gets bone and ankle pain especially if tired and if she has been out in the cold. My consultant has recommended that I dont give her paracetamol. Instead I try and prevent it and I give her a hot water bottle going to bed with warm socks. Sometimes if it is bad I have to put her in the bath and take her in beside me in bed. I really these tips help.
Hello Irishmammy! I have one of them myself - I'm Dublin born, bred and buttered!
For what it's worth, when I was a little lad, probably around 6 or 8 I used to get terrible pains in my ankles. They'd keep me awake at night. The doctor just called them growing pains. So it might not be 100% down to the medication.
Parecetemol would indeed be a bad idea. It's tough on the liver, as are TKIs so you don't want to overburden it - especially a little 6 year old one.
My health insurance paid for a leg massage machine (OSIM uPhoria). It's brilliant, and really helped me when I was having leg pain with imatinib (since all sorted with a change to dasatinib), though I still get leg cramps frequently so the machine gets regular use. Everyone loves it, and when guests come over they hop straight in!
David.
Janey Mac!
Thanks David for the tips.
It's still all a bit new to us, we were muddling through and trying to go on as normal even though it will never BE normal.
We have dental on Wednesday to see how the secondary dentition is growing, they say that Imatinab can affect the teeth, we have a rigorous regime as it is actually my own clinical field, however she had two shadows on her baby teeth which were capped.
If I am being honest, I still cant get my head around it, how did it happen, was it something I did or exposed her to, these questions and doubts never leave me but thank God she is doing well, the BCR able is zero and her cytogenetics are normal ( she had the philadelphia chromosone and another breakage but they have resolved).
Another issue is the pallor, it cant be explained by her HB levels which are around 11.3 and better than my own. She also has a poor appetite and I need to give her lots of snacks little and often.
It is great to know this forum is here. I am very cautious to google anything as I am an evidenced based clinician myself.
When we go to the clinic its all AML and ALL and it is great to see the children coming off treatment and the trajectory is so different. Our team are absolutely fantastic too.
If you don't get the answers you want on the dental front let me know. My sister is a paediatric dental consultant in Crumlin hospital and is much more clued up on CML than your average dental practitioner for obvious reasons and am sure would be happy to share her thoughts. Maybe you're going to see her on Wednesday if by chance you were visiting Crumlin?!
PS. when things go well, it's surprising how things do return to pretty much normal. Not for everyone, as some people do still have their problems - but the vast majority just pop a pill and get on with their lives. They're the ones that don't need to post to a forum such as thing. So with luck, in the not too distant future that'll be the case for your family.
David.
In case its ever useful there is a world specialist in CML based in Galway....Prof Micheal O Dwyer.