
Leg Cramps
#1
Posted 22 May 2016 - 09:10 AM
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!
#2
Posted 22 May 2016 - 09:37 AM
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.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#3
Posted 22 May 2016 - 05:24 PM
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#4
Posted 22 May 2016 - 07:03 PM
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.
#5
Posted 23 May 2016 - 10:06 AM
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
#6
Posted 26 May 2016 - 03:51 PM
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.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
#7
Posted 27 May 2016 - 08:22 AM
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.
#8
Posted 01 June 2016 - 11:03 AM
I use Aborbine Jr. An old medicine from my grandmother that still works. simple abut a little smelly
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#9
Posted 02 June 2016 - 07:29 PM
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.
#10
Posted 02 June 2016 - 07:52 PM
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
#11
Posted 03 June 2016 - 02:09 PM
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
Diagnosed 10/02/2015
Started Gleevec 400 mg 10/29/2015
10/29/2015 - 105% IS
01/28/2016 - 5.6% IS
02/02/2016 - 1.31% IS
04/21/2016 - 0.33% IS
07/29/2016 - 0.36% IS
10/10/2016 - 0.26% IS
01/11/2017 - 0.16% IS
04/03/2017 - 0.037% IS
06/20/2017 - 0.020% IS
07/24/2017 - 0.34% IS - switching to Tasigna
10/26/2017 - 0.47% IS - off Tasigna and now being switched to Sprycel
#12
Posted 03 June 2016 - 04:45 PM
#13
Posted 04 June 2016 - 04:12 AM
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
#14
Posted 04 June 2016 - 10:15 AM
And a lot cheaper than Thermage! Settings are tricky, tho - is Silk/Wool too light? Is Linen too much? Probably safe with Cotton!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#15
Posted 04 June 2016 - 11:32 AM
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

#16
Posted 06 June 2016 - 03:15 PM
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...
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#17
Posted 06 June 2016 - 08:54 PM
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.
#18
Posted 15 June 2016 - 08:53 PM
#19
Posted 15 June 2016 - 09:23 PM
#20
Posted 16 June 2016 - 05:56 AM
Really great news!
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
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