Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hi Everyone My son (Pre-B ALL Std HR) is 8 years old and is in his 7th month of LTM. He has handled his meds pretty well during the first 8 months of treatment but recently has been having difficulty. His counts have been crashing a lot and he is numbers are starting to show possible problems with his liver. I know kids with DS can be more sensitive to methotrexate and some of the other drugs. What side effects do your kids show with sensitivity to the drugs? Does just the ANC drop or does the hmg and platelets also drop significantly? Have any of your kids required transfusions because of low counts during LTM (when they were not sick)? I've just been so worried about him lately because his hmg is low and went down and not up after his last hold. I'm just curious if this happens to any of your kids. Thanks for any feedback! JoOriginal Message ----- From: esfmomma Sent: Saturday, June 13, 2009 3:05 PM Subject: [ ] Ethan WALKS!!! Hello!I want to share with you a video that was recently taken of Ethan walking down the hall at school. We have worked so long and hard for this and I just wanted to share.http://faulknerfam.blogspot.com/2009/06/video.htmlHugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 To follow up on your message. , my son, has been off treatment for 3 years too. His counts are not normal either according to the CBC chart. However, his Oncologist says he is "normal". Is there a new normal for our kids after chemo? LInda Dell Inspiron 15: Now starting at $349 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hi I don't have an answer for you but I am anxious to hear the responses. My 4 1/2 year old daughter was just dx with ALL. She was dx with AML when she was 2 1/2 and was in remission for 15 months before this new dx. Nicki & Ashlyn From: Jim & Jo Baar <jbaar@...>Subject: [ ] Methotrexate Toxicity Date: Friday, June 19, 2009, 1:02 PM Hi Everyone My son (Pre-B ALL Std HR) is 8 years old and is in his 7th month of LTM. He has handled his meds pretty well during the first 8 months of treatment but recently has been having difficulty. His counts have been crashing a lot and he is numbers are starting to show possible problems with his liver. I know kids with DS can be more sensitive to methotrexate and some of the other drugs. What side effects do your kids show with sensitivity to the drugs? Does just the ANC drop or does the hmg and platelets also drop significantly? Have any of your kids required transfusions because of low counts during LTM (when they were not sick)? I've just been so worried about him lately because his hmg is low and went down and not up after his last hold. I'm just curious if this happens to any of your kids. Thanks for any feedback! JoOriginal Message ----- From: esfmomma Sent: Saturday, June 13, 2009 3:05 PM Subject: [ ] Ethan WALKS!!! Hello!I want to share with you a video that was recently taken of Ethan walking down the hall at school. We have worked so long and hard for this and I just wanted to share.http://faulknerfam. blogspot. com/2009/ 06/video. htmlHugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 My son (Pre-B ALL Standard) has been on LTM a little over a year now. The first six months he was on maintenance his counts would crash severely and had to be hospitlized several times. I kept asking if the methotrexate did that to other kids and they kept telling me not usually this much. In January he was hospitlized for two weeks with an infection. He has a G-tube and that is where the infection started. I believe he had an undiagnosed infection for many months brewing inside him. They started his methotrexate back at 50% and have been increasing it ever so slightly ever since. They also took him of of the bactrim and put him on pantamidine for his antibiotic. His ANC which would never go above 1,000, now has never gone below 3,000. In fact I keep telling them now to increase it. He has been at 75% methotrexate for about 8 weeks and I believe they are going to increase by 1/2 a pill next week. You could have them try changing the antibiotic. They told us that sometimes the bactrim messes with their counts and its not the methotrexate at all. In our case, I don't know what made the big difference, I might be the antibiotic. I guess Pantamidine is their second choice to prevent pneumonia, but I would rather have him taking that then without an immune system for the next couple years. Connie Gliott From: Nicki McFadden <mizbehvnkidz@...> Sent: Friday, June 19, 2009 1:32:16 PMSubject: Re: [ ] Methotrexate Toxicity Hi I don't have an answer for you but I am anxious to hear the responses. My 4 1/2 year old daughter was just dx with ALL. She was dx with AML when she was 2 1/2 and was in remission for 15 months before this new dx. Nicki & Ashlyn From: Jim & Jo Baar <jbaartampabay (DOT) rr.com>Subject: [ ] Methotrexate Toxicity Date: Friday, June 19, 2009, 1:02 PM Hi Everyone My son (Pre-B ALL Std HR) is 8 years old and is in his 7th month of LTM. He has handled his meds pretty well during the first 8 months of treatment but recently has been having difficulty. His counts have been crashing a lot and he is numbers are starting to show possible problems with his liver. I know kids with DS can be more sensitive to methotrexate and some of the other drugs. What side effects do your kids show with sensitivity to the drugs? Does just the ANC drop or does the hmg and platelets also drop significantly? Have any of your kids required transfusions because of low counts during LTM (when they were not sick)? I've just been so worried about him lately because his hmg is low and went down and not up after his last hold. I'm just curious if this happens to any of your kids. Thanks for any feedback! JoOriginal Message ----- From: esfmomma Sent: Saturday, June 13, 2009 3:05 PM Subject: [ ] Ethan WALKS!!! Hello!I want to share with you a video that was recently taken of Ethan walking down the hall at school. We have worked so long and hard for this and I just wanted to share.http://faulknerfam. blogspot. com/2009/ 06/video. htmlHugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hi Connie Thanks for the info. How were his platelet and hemoglobin counts during this time? Did he ever need a transfusion during LTM? 's hmg was 9.2 on Monday and he's so pale now I think it's gone lower. I wasn't worried about his platelets but I just discovered petichiae all over his arms. I just put a call in to the clinic. Of course I fear the worst. I hope it's just the chemo but I wish all of his counts weren't affected. He's acting fine and has no fever. Jo [ ] Ethan WALKS!!! Hello!I want to share with you a video that was recently taken of Ethan walking down the hall at school. We have worked so long and hard for this and I just wanted to share.http://faulknerfam. blogspot. com/2009/ 06/video. htmlHugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hi Jo I hope you've taken back to the hospital - if he has petechiae he need to be seen. The dr's had to play with 's methotrexate level alot. It affected him very badly. has been off treatment now for 3 years and his counts are still not normal. never showed liver problems from the methotrexate but he did from the asparaginase. That put him into liver failure and almost killed him. From a slightly different perspective, my mum takes methotrexate for rheumatoid arthritisnd she has been showing signs of liver problems. I hope all goes well for . Chris Adelaide, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hi Our oncologist said that our kids tend to have lower counts than other kids even before having chemo. There are 2 other kids here with DS that had leukaemia too, and their counts are lower than " normal " too. The dr said that this was 's 'normal' now. His counts will always be slightly lower. We have to keep an eye on his liver function though - enough damage was done from the asparaginase that he may eventually need a liver transplant. Cheers Chris Bluyz1966@... wrote: > > > > To follow up on your message. , my son, has been off treatment for > 3 years too. His counts are not normal either according to the CBC > chart. However, his Oncologist says he is " normal " . Is there a new > normal for our kids after chemo? > > LInda > > > ------------------------------------------------------------------------ > Dell Inspiron 15: Now starting at $349 > <http://pr.atwola.com/promoclk/100126575x1222435718x1201460505/aol?redir=http:%2\ F%2Fad.doubleclick.net%2Fclk%3B215748553%3B38126199%3Bs> > Quote Link to comment Share on other sites More sharing options...
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