Hi. My name is Claudia and I am the mother of a 16yr old, Andres, diagnosed on July 20th. We suffered a severe crisis as his white blood cell count rose to 600,000u and it derived on other grave consequences that had us in intensive care for 11 days. Luckily, my son overcome those and we are now home on his 5th week with Glivec. Platelets, hemoglobin and white blood cells are now in normal levels. He is experiencing joint pain and what he describes as "bone pain". These pains come and go. Are they normal? Also, how many weeks for Glivec to "settle" and work? How soon can we expect to have normal activities? Thank you very much for any information you may provide. All the best to all!
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Newly diagnosed 16yr old
As a mom my heart goes out to you. Many blessings to you and your son. Thank goodness for Glivec/Gleevec! I had bone pain and cramps for a while but Ibuprofen really helped. These happened to me during the transition from unhealthy blood counts to healthier now. My diagnosis was in April so I am a few months ahead of Andres. The pain and cramps only lasted a few weeks for me and they have almost completely gone. My sense is that everyone is a little different so it is hard to know how long this will last for him, but I hope it will pass quickly. I really just have fatigue and puffy eyes now and an occasional leg/foot cramp, but the doctor said to take calcium supplements and that seems to help.
All the best to Andres and you. It is a very bright future, hang in there!
So sorry your son has been diagnosed with CML... a rare occurrence for his age group. Nevertheless, the outlook is good and it seems from what you say he is responding to therapy with imatinib. Initially, he will no doubt the more common side effects such as muscle cramps and joint pain. In my own case, the aches subsided at around 12 weeks post starting therapy with imatinib but muscle cramps did continue over time and I had to learn how best to manage them. Walking and stretching exercises certainly helped as did direct heat application (via one of those packs you can heat up in a microwave and/or hot baths)... and most people will tell you that this particular effect will decrease or disappear within the first few months. Your son will need to find a way that best suits his lifestyle, but initially, heat application definitely does help.
Yoga and/or Pilates may be an answer for him in the longer term. Eva (a member of this forum) has said she has found lifting (light) weights has resolved her leg cramps etc.
Meanwhile, as his response to therapy continues, please do not hesitate to use this forum to ask for advice or clarifications on his treatment and monitoring tests.