Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 It is very uncommon for AML to go to ALL. For those that have kids with ALL, what was the % of leukemia cells in the marrow at dx? Ashlyn's was 96%. Is that common for ALL to be that high? When she had AML, she was dx with only 19% in her marrow. Thanks, Nicki & Ashlyn cp: ashlynnichole 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 20, 2009 Report Share Posted June 20, 2009 Nicki I'm sorry to hear about Ashlyn's ALL diagnosis. Your family has definitely had many challenges facing leukemia twice. When was diagnosed his percentage in the marrow was 91%. I remember the doctor saying it was high but I know of many kids whose marrow was in the 90% range. By day 14, 's marrow was 1.5% so he was considered an early rapid responder. Unfortunately, he did have an MRD of .12 at end of induction so he was placed in the std high risk group. I know of kids who were slow responders but then had no MRD at induction, so each child is different. Hoping Ashlyn responds well to treatment. 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 20, 2009 Report Share Posted June 20, 2009 When was diagnosed with AML I *think* that he had about 36% blast cells and I remember thinking that it wasn’t very high when everyone else I talked to with ALL had in the 90% range. was clear of blast cells after his first round of chemo. Ive never heard of AML turning to ALL later on, Im going to definitely ask about that though. From: [mailto: ] On Behalf Of Jim & Jo Baar Sent: Saturday, June 20, 2009 7:13 AM Subject: Re: [ ] Re: AML now ALL Nicki I'm sorry to hear about Ashlyn's ALL diagnosis. Your family has definitely had many challenges facing leukemia twice. When was diagnosed his percentage in the marrow was 91%. I remember the doctor saying it was high but I know of many kids whose marrow was in the 90% range. By day 14, 's marrow was 1.5% so he was considered an early rapid responder. Unfortunately, he did have an MRD of .12 at end of induction so he was placed in the std high risk group. I know of kids who were slow responders but then had no MRD at induction, so each child is different. Hoping Ashlyn responds well to treatment. Jo ----- Original Message ----- From: Nicki McFadden Sent: Saturday, June 20, 2009 9:29 AM Subject: Re: [ ] Re: AML now ALL It is very uncommon for AML to go to ALL. For those that have kids with ALL, what was the % of leukemia cells in the marrow at dx? Ashlyn's was 96%. Is that common for ALL to be that high? When she had AML, she was dx with only 19% in her marrow. Thanks, Nicki & Ashlyn cp: ashlynnichole 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 @ groups. com 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. html Hugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 had 95% leukemia cells in the marrow at diagnosis. That is very high, and the onc seemed very concerned, and called it a "miracle" when he reached remission. Beth [ ] 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 20, 2009 Report Share Posted June 20, 2009 , We are thinking alike! I already contacted 's oncologist. She responded that is it very rare (<1%). Pearson 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 20, 2009 Report Share Posted June 20, 2009 I think Im going to have to email and ask too. has been off treatment for almost 8 yrs but likes to do “rare†things but glad to hear its <1%. From: [mailto: ] On Behalf Of Pearson Sent: Saturday, June 20, 2009 1:05 PM Subject: RE: [ ] Re: AML now ALL , We are thinking alike! I already contacted 's oncologist. She responded that is it very rare (<1%). Pearson 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 @ groups. com 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. html Hugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Hi Nicki's blast count was 98% when diagnosed. They said he would have only lived for another week or 2 without treatment. He went into remission 21 days after treatment started though. Boy, did we celebrate! So sorry to hear about Ashlyn.CheersChris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Wow, had AML, and I didn't know there was such a difference in blast counts with ALL. This has been educational. No wonder once diagnosed the doctors want to start treatment NOW!. You don't even have time to process or get a second opinion because of the urgency to get started. Makes sense. sp From: Jenkin <christine.jenkin@...>Subject: Re: [ ] Re: AML now ALL Date: Sunday, June 21, 2009, 1:57 AM Hi Nicki's blast count was 98% when diagnosed. They said he would have only lived for another week or 2 without treatment. He went into remission 21 days after treatment started though. Boy, did we celebrate!So sorry to hear about Ashlyn.CheersChris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Hi Nicki- So sorry to hear about Ashlyn. Trevor has ALL and his blast count was also about 98%. He went into remission after his first month of induction. Blessings to you and your family- Dawn From: Jenkin <christine.jenkin@ gmail.com>Subject: Re: [ ] Re: AML now ALL Date: Sunday, June 21, 2009, 1:57 AM Hi Nicki's blast count was 98% when diagnosed. They said he would have only lived for another week or 2 without treatment. He went into remission 21 days after treatment started though. Boy, did we celebrate!So sorry to hear about Ashlyn.CheersChris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 So very sorry to hear of this. We wish you the best and our thoughts and prayers will be with you. --, Ben, and Zachary----- wrote: ----- From: Nicki McFadden <mizbehvnkidz@...>Sent by: Date: 06/20/2009 09:29AMSubject: Re: [ ] Re: AML now ALLIt is very uncommon for AML to go to ALL. For those that have kids with ALL, what was the % of leukemia cells in the marrow at dx? Ashlyn's was 96%. Is that common for ALL to be that high? When she had AML, she was dx with only 19% in her marrow. Thanks, Nicki & Ashlyn cp: ashlynnichole 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. html Hugs & Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Hi Nicki, Ethan's % was 20% at dx with ALL. He had to be at 25% to be "on" protocol even though we followed the protocol. Another little girl that we knew came in at close to 85% blasts at dx and her treatment was the same as ours and in remission by week four just like us. We have been praying for Ashlyn and the family. ~~ Mom to Ethan, 8 years (Ds, ALL dx 02/13/04) [ ] 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 22, 2009 Report Share Posted June 22, 2009 Nicki, I'm sorry to hear about Ashlyn's ALL diagnosis. I can't even imagine what it must be like. We've been off treatment for AML for 13 months now. Our family is just starting to get back to "normal" what ever that means. To turn around and have to go back on the treatment roller coaster so soon must be awlful! Our prayers are with you and Ashlyn. The Seeley Family Quote Link to comment Share on other sites More sharing options...
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