Dear John, Thanks so much for sharing the details about your son. It helped a great deal. I completely agree with being "normal" in front of the kid. My wife and I have tried hard to do that. Taking Motrin seems to be a common strategy among kids showing the leg pain side-effects, as some parents shared with me. Thankfully, my daughter's pain is currently at a level that's tolerable and it did not affect her sleep. We'll keep your suggestions in mind. We also see some reduction in her appetite and we hope it will improve over time, as your son eventually did. It is very comforting to know that your son has returned to normal life and is engaging in sports activities.
Being on Gleevec for 3+ weeks, Emily's WBC has dropped to the normal range! But now all her blood cell counts are low. Doctors tend to think it's due to the side effect of Hydroxyurea, which they stopped a week ago. They are hoping the counts will return back to normal in about a week. Now, being on Gleevec for 2 years, do you see count fluctuations from time to time due to Gleevec? Regards, Thomas On Mar 27, 5:39 am, John <[email protected]> wrote: > Thomas, > > My son was diagnosed a month after he turned six, exactly two years > ago. He was diagnosed with a count of 47,500, and something like > 95.0% leukemic cells, went on Gleevec, and went up to 96,000 before > coming down at a good clip. He kept going down very quickly, with > current percentages of 0.001% to 0.008%. > > He started out alternating 200mg one day, 300mg the next, six days a > week. Eventually we figured out that was not enough, and he went to > taking it seven days a week. Now, he's at 300mg/day, based on height > and weight. (Really, dosage is based on the surface area of the > patient's body.) > > For a long time, we gave it to him after breakfast. He didn't really > have nausea, but he had a total loss of appetite. Getting him to eat > was a real battle, every single meal for one year and three months. > What he did have was a lot of pain in his shins. It interfered with > school - he would go and have to go to the nurse's office most days. > Eventually we figured out we could give it to him before bed, with > half a dose of Motrin for his body weight, and he would sleep through > the night, and have no problems the next day. > > Unfortunately, while we were figuring that out, he developed a fear of > running because that would bring on the pain. My wife and I were also > a wreck emotionally, and he saw some of that. We also learned that he > is a mirror of us, so if one of us was upset in front of him, he would > be very upset for days. He went back to hiding behind my wife's leg, > like some kids do when they're much younger. > > It took us a couple of months or so to figure all of this out. It > took him almost a year after that to lose his fears, and go back to > "normal" emotionally. Even today, if he overhears my wife and I > talking about this count or that count being low (because he's got a > virus his brother had the week before), he gets very upset but tries > to hide it. > > Of course you need to run something like this past your doctor, but we > give him half a dose of Motrin along with Gleevec, at bedtime. If we > don't give him Motrin, he wakes up five to six hours later with leg > pain. We try every few months to take him off Motrin, and once he > made it two nights without waking up, then he woke up two nights in a > row at 2AM, then we started giving it to him again (he was the one who > wanted to try to stay off it). > > Next, I don't know how you are doing emotionally in front of her, but > we forced ourselves to be "normal" in front of him and our other > children. It was very difficult for the first few+ months after > diagnosis, but we had to for his sake. > > Today he is taking Gleevec and Motrin (half a dose) nightly. He plays > soccer without fear of running, and is involved in other sports, > hasn't hid behind a leg in almost a year, is actually quite outgoing > and confident, has somewhat of an appetite, and has started gaining > weight again. > > He's a happy boy, leading a normal life. We hope it continues. > > - John > > On Mar 25, 2:01 pm, Thomas Chang <[email protected]> wrote: > > > Again, Thanks for all your support. > > > Can you share experiences in the Gleevec side effects in your kids? > > > For Emily, there's occasional nausea after taking Gleevec, which we > > have been managing by giving her the pill right before falling asleep > > to sleep it off. > > Emily is feeling join/muscle pain. While the pain during day-time is > > more tolerable, it's bothering her more in the evening hours when > > she's more tired. > > > Also since she took Gleevec 2-3 weeks ago, her energy level dropped by > > at least by 30-40%. She gets tired easily, and prefers sitting down > > rather than jumping up and down all the time before. > > > We are hoping some of these side effects are short-term, but hey, if > > Gleevec works consistently, we can tolerate all these side effects. > > > Best wishes to all! > > > Thomas > > > On Mar 24, 6:03 pm, Ricardo Gadelha <[email protected]> wrote: > > > > Thomas, > > > Good night from Brazil. > > > When my son was diagnosed 3 years ago I was simply devastated. But now I > > > see > > > that is ok to live with CML and my son is doing very well - normal life. > > > Emily will be very well soon. > > > take care, > > > Ricardo. > > > > On Tue, Mar 23, 2010 at 4:37 AM, Thomas Chang > > > <[email protected]>wrote: > > > > > Thank you all for your great support... > > > > > After being Gleevec for 2 weeks, Emily's WBC dropped to 17000 in > > > > today's checkup, from 120k. We are more optimistic now. Doctors told > > > > us that the effectiveness of Gleevec will only be proven in future > > > > milestones in bone marrow aspirations but this looks like a good > > > > start. We are very thankful for the prayers answered. > > > > > Gleevec side-effects are so far tolerable. The nausea has reduced in > > > > frequency and join pain seems to have reduced, fortunately. > > > > > Again, Thanks to all! > > > > > Thomas > > > > > On Mar 20, 1:56 am, "[email protected]" <[email protected]> > > > > wrote: > > > > > Thomas, so sorry to hear your young daughter has been diagnosed with > > > > > CML. Cancer/Leukemia is scary words to hear. My heartfelt sympathy > > > > > goes out to your daughter and family. Gleevec is a miracle drug....and > > > > > if anyone is destined to get cancer or leukemia....she has the good > > > > > kind. You made a good decision by joining this group....if there are > > > > > things you may not fully understand from her doctor, there is someone > > > > > here who is going through what you are, and they can answer your > > > > > questions or direct you to someone who can. Try to be comfort to your > > > > > daughter, and if you are terrified, try not to display your fears in > > > > > front of her and keep a positive attitude for her and yourself. Most > > > > > children deal with things much better than we adults do. If you need > > > > > someone to talk to, the group is here and you are welcome to email me > > > > > privately if you just need someone to talk to. Adding your daughter > > > > > and family to my prayer list. I hope all goes well with her treatment, > > > > > it may be rough in the beginning with just dealing with it, or side > > > > > effects from the Gleevec, but it's a great possibility she will do > > > > > well. > > > > > Love,Peace,Hope & Prayers, Pat > > > > > On Mar 14, 12:48 pm, Thomas Chang <[email protected]> wrote: > > > > > > > Hi All, > > > > > > My daughter 6 years old was diagnosed with CML in chronic phase 8 > > > > > > days > > > > > > ago. > > > > > > Dr. recommended Gleevec, which started 5 days ago, but there's no > > > > > > change in the white blood count. > > > > > > > Any pediatric case in how soon Gleevec started to take effect would > > > > > > be > > > > > > helpful. > > > > > > > Thanks, > > > > > > Thomas > > > > > -- > > > > [CMLHope] > > > > A support group ofhttp://cmlhope.com > > > > ------------------------------------------------- > > > > > You received this message because you are subscribed to the Google > > > > Groups > > > > "CMLHope" group. > > > > To post to this group, send email to [email protected] > > > > To unsubscribe from this group, send email to > > > > [email protected] > > > > For more options, visit this group at > > > >http://groups.google.com/group/CMLHope > > > > > To unsubscribe from this group, send email to cmlhope+ > > > > unsubscribegooglegroups.com or reply to this email with the words > > > > "REMOVE > > > > ME" as the subject. > > > > -- > > > Ricardo -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope To unsubscribe, reply using "remove me" as the subject.
