20 replies to this topic

[CMLParent]

Hello Group

I am the parent of a 4 yr old currently taking Dasatinib. Overall he seems to tolerate the drug well with the exception of leg cramps. He doesn't like to talk about the leg Cramps but we know he has them and it occasionally wakes him up in the middle of the night. I belong to a pediatric CML group but nothing beats first hand information from the people that take these drugs day in and day out.

My questions are the following

- For those of you with this side effect is it persistent or does it come in waves?

- Is it joint pain or muscle cramps?

- Is there a time of day or interval from dose that is particularly pronounced?

- What do you do to manage this side effect?

Thank you very much for any information on this topic!

[scuba]

I developed leg cramps shortly after starting Dasatinib (Sprycel). My Oncologist told me to supplement with magnesium (magnesium citrate). TKI's such as Sprycel can cause magnesium depletion in the body. Low magnesium levels lead to muscle cramping most pronounced in the legs. 

 

Once I added magnesium to my diet using supplements no more leg cramps. I have been doing this for years now.

 

Check with your doctor on the proper amount of magnesium to add for a four year old. 

[Gail's]

I followed Scuba's example and have found magnesium to be very helpful. My oncologist agreed that it is useful but there's not a lot of research she's found about it. She advised to take it at night for best effectiveness.

[gerry]

Probably dumb question - he isn't having growing pains rather than muscles cramps from Sprycel?

 

The pain is usually felt in the late afternoon and evening, right before dinner time, and at bedtime. The leg pains may hurt so much that they may wake your child from sleep.

Growing pains disappear in the morning. They usually do not interfere with the child's ability to play sports or be active.

In general, growing pains are felt in both legs, especially in the front of the thighs, back of legs (calves), or behind the knees.

[Melanie]

I also use magnesium citrate in the evenings and it works most the time. If I've been on my feet a lot or especially active, I always have cramps that night and I've found that extra hydration with vitamin water and sometimes Ibpropen help. Your little guy is so brave. These legs cramps are very intense. At times they make me come fying out of bed trying to walk them off. I really hope you find something that works for him. Hugs!

[beno]

When I started taking Sprycel, the pharmacy told me that I couldn't take any Ibuprofen, Aleve, or Aspirin.  Do you have any trouble with Ibuprofen?  At the time, my hemoglobin and platelet counts were very low so maybe they didn't want me to take medicines that thin your blood because of that.

[Trey]

His side effects could be muscle cramps, bone pain, and/or muscle pain.  Bone and muscle pain generally subside over time.  Muscle cramps require supplements such as potassium and magnesium.  Muscle cramps are generally worse within a couple hours of taking the drug, but they can also occur any time of day or night.  He can try changing the time of day he takes the Sprycel and see if that reduces night time cramps. 

[tazdad08]

I use Aborbine Jr. An old medicine from my grandmother that still works. simple abut a little smelly 

[CMLParent]

Thank you all for your input. I am starting him on magnesium supplements. Hopefully we see an improvement!

Beno - Ibuprofen can negatively impact platelet production so since diagnosis we have avoided this. Tylenol seems to be the standard that the docs like us to use.

[gerry]

Magnesium didn't work for my leg cramps from the Gleevec, but celery seed did. I originally took it for the fluid retention, but it helped with the muscle cramps.

 

If the magnesium doesn't help, maybe something else to try.

Maryland Uni has a good site covering herbal supplements, no evidence for the celery seed, but it does cover off any interactions etc. http://umm.edu/healt...erb/celery-seed

[Liamsdad]

Hi, Gerry.  How did you take the celery seed.  I am having both a lot of fluid retention and nightly leg cramps and daily hand cramps and magnesium and other diuretics have not worked at all for me for these issues.  I'm taking Gleevec 400mg. I'd like to know what worked for you. Thanks  

[gerry]

You can get it as a supplement, which was easier to take. Didn't do much for me as a diuretic though. My doc put me on Moduretic for the fluid retention. I also continued to take the magnesium.

[Billie Murawski]

First of all I am so very sorry you have a 4 year old with cml,my heart goes out to you and him luckily children are more resiliant than we are. I have had cml almost 9 years and I am on Sprycel 20mg. I have been undetectable for 6 years. I was on Gleevac for 3 years at first and I got horrible muscle cramps. I went on 250mg magnesium and I have not had a cramp for 6 years.

 But as Gerry said some of it could be what we used to call growing pains. I remember as a small child I would wake up with awful pains in my legs. My mom would rub them with ben gay and then she would rub the hot iron over my legs (Trey she put a thick towel on my legs) I don't know if we were that poor of they hadn't invented heating pads yet.

 Hey, maybe if I iron my legs now all the crinkly wrinkles will smooth out.

                                                                     Sincerely Billie

[kat73]

And a lot cheaper than Thermage!  Settings are tricky, tho - is Silk/Wool too light?  Is Linen too much?  Probably safe with Cotton!

[CMLParent]

First of all I am so very sorry you have a 4 year old with cml,my heart goes out to you and him luckily children are more resiliant than we are. I have had cml almost 9 years and I am on Sprycel 20mg. I have been undetectable for 6 years. I was on Gleevac for 3 years at first and I got horrible muscle cramps. I went on 250mg magnesium and I have not had a cramp for 6 years.
But as Gerry said some of it could be what we used to call growing pains. I remember as a small child I would wake up with awful pains in my legs. My mom would rub them with ben gay and then she would rub the hot iron over my legs (Trey she put a thick towel on my legs) I don't know if we were that poor of they hadn't invented heating pads yet.
Hey, maybe if I iron my legs now all the crinkly wrinkles will smooth out.
Sincerely Billie

Thank you Billie. It has been a challenge given he presented in blast crisis (not uncommon in toddlers diagnosed with CML)

We started him on magnesium this week. I am hoping it does the trick. Thanks for your input. I am going to skip the iron for now and go with a heating pad

[tazdad08]

WOW!!! 4 years young. This little strong boy and his family will definitely be in our prayers. I have to say from a parents perspective that I admire YOU too. I have always said that the best thing about having cml is that I have it and not my kids...

[CMLParent]

WOW!!! 4 years young. This little strong boy and his family will definitely be in our prayers. I have to say from a parents perspective that I admire YOU too. I have always said that the best thing about having cml is that I have it and not my kids...

Thank you. If I had one wish it would be to switch places with him.

[CMLParent]

Quick update here. We started on the Magnesium and the leg cramps are gone. Not only that, but his energy level has increased exponentially and he has been running non stop. It shows just how much of an issue this has been for him. Thank you all for your help.

[gerry]

Great news

[r06ue1]

Really great news!