Re: Methotrexate Toxicity & VCR questions

[Guest guest]

Beth - If you don't mind me asking, how old was your son at dx? Has he completed treatment? What type of leukemia? Just curious... Thank you!

Our son, Adam, (A.L.L., std treatment) was dx April 2008, right before his 3rd birthday. He is on maintenance now. We are currently having concerns with MTX too & the levels he receives. We are looking into getting an MRI to see how he is handling the MTX. After having his dosage reduced several months ago, the docs have been trying to gradually increase it. I swear that the last increase has caused some issues for him. The doctor wants the MRI prior to his next IT MTX, in 2 weeks. This should tell us how the white matter looks in his brain. If it seems "standard" for someone taking MTX, then at least we will have a baseline for future reference... if we should continue to have concerns. If it is not "standard", then we will probably be giving him Leucovorin (sp??? - it's late. smile) at 48 and 60 hours after IT MTX. Not sure about the oral dosage at that point.

Also, as Adam has had some leg pain in the past, this last of VCR was the worst. He received it 2 weeks ago, after 5 days, he began complaining of leg and foot pain. Today, he is still not wanting to walk and asks to be carried. We have put him on neuronton to see if this will help, prior to getting his next VCR in 2 weeks. (Adam has recently had fever, which is probably caused by a virus. So, not sure how much of his weakness is caused by this as well.)

Anyone else have any input to either? Thank you!

Sharla

Please help support people with Down syndrome, by shopping through this link:

http://www.dsaction.com/content/view/59/137/ or at "Give Back America" at this link: http://www.givebackamerica.com/charity.php?b=132

This is a great way to donate and support others.You will find many popular retailers, such as Amazon, Department Stores, Wal-Mart, Target, etc. They will donate a percentage of your purchase to DS Action, which provides advocacy for individuals with Down syndrome. Please recommend these links to your friends.

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,

[Guest guest]

Now its been awhile, but from what I remember there are quite a

few kids that have leg pain with VCR and refuse to walk. It does go away

after awhile but I seem to recall some kids ending up with contractures (tightening

of the tendons) in their legs from it and would walk tippie toed.

From:

[mailto: ] On Behalf

Of s hank

Sent: Friday, June 19, 2009 10:58 PM

Subject: Re: [ ] Methotrexate Toxicity & VCR questions

Beth - If you don't mind me asking, how old was your son

at dx? Has he completed treatment? What type of leukemia?

Just curious... Thank you!

Our son, Adam, (A.L.L., std treatment) was dx April 2008,

right before his 3rd birthday. He is on maintenance now. We are

currently having concerns with MTX too & the levels he receives. We

are looking into getting an MRI to see how he is handling the MTX.

After having his dosage reduced several months ago, the docs have been trying

to gradually increase it. I swear that the last increase has caused

some issues for him. The doctor wants the MRI prior to his next IT MTX,

in 2 weeks. This should tell us how the white matter looks in his

brain. If it seems " standard " for someone taking MTX, then at

least we will have a baseline for future reference... if we should continue

to have concerns. If it is not " standard " , then we will

probably be giving him Leucovorin (sp??? - it's late. smile) at 48 and 60

hours after IT MTX. Not sure about the oral dosage at that point.

Also, as Adam has had some leg pain in the past, this last

of VCR was the worst. He received it 2 weeks ago, after 5 days, he

began complaining of leg and foot pain. Today, he is still not wanting

to walk and asks to be carried. We have put him on neuronton to see if

this will help, prior to getting his next VCR in 2 weeks. (Adam has

recently had fever, which is probably caused by a virus. So, not sure

how much of his weakness is caused by this as well.)

Anyone else have any input to either? Thank you!

Sharla

Please help support

people with Down syndrome, by shopping through this link:

http://www.dsaction.com/content/view/59/137/

or at " Give Back America " at this link: http://www.givebackamerica.com/charity.php?b=132

This is a great way to

donate and support others.

You will find many popular retailers, such as Amazon, Department Stores,

Wal-Mart, Target, etc. They will donate a percentage of your purchase to DS

Action, which provides advocacy for individuals with Down syndrome. Please

recommend these links to your friends.

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,

[Guest guest]

Sure. My son is 9 years old now, and he was diagnosed at age 3 (2 months shy of 4 years old). He was diagnosed 10/29/03 and went off treatment 3/9/07. He had high-risk, preB acute lymphoblastic leukemia (ALL). He was treated according to CCG1961c.

He did fine with IT mtx; couldn't tolerate IV mtx at all and had to have a low dose (about 30-40%) of oral mtx in LTM. He never had an MRI. He certainly had and still continues to have weakness and fatigue, but he's mostly nonverbal and (he has DS and autism), and he has hypotonia and a primary immune deficiency, so it's hard to say what's from the cancer and what's from other issues.

Hope that helps!

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,