I did a search on here about HD MTX, and only came up with negative topics about it. Everything I have read about this chemo drug scares me. I saw on here that two kids had seizures and strokes from this drug. Is this common? Does anyone have stories to share where their kiddo did okay with this?
For Elle's next block of Consolidation, she gets 1 dose of HD MTX and 2 days (4 doses) of HD Cytarbine. I haven't found much info on the HD Cytarbine. Has anyone's kiddo had that?
Pete only had HD MTX once, and got very bad mucositis from it, and they said he could never have it again. But I do know plenty of kids that have done ok on it. Pete is just really sensitive to any kind of MTX, even oral.
He was due to have the HD cytarabine, but they said he wouldn't be able to cope with it. So I'm sorry that I can't help you with that one. Hopefully someone else will chime in.
Try not to freak out over the posts you read. Remember nobody is going to write about how easy or well tolerated a drug was--most people come here when something is bothering them.
As for HDMTX my son had it in 2008, he was hospitalized until it cleared from his system with leucovorin rescue (normal on his protocol) He felt like crap but for him it was no worse than anything else.
He has also received HD Ara-C(cytarabine), fevers were the worst part of that treatment. The prophylactic eye drops drive my son crazy.
Both drugs caused my son's counts to crash and they took awhile(it was too long ago to remember exactly) to recover
This sounds silly and do still read and research others experiences but please try and remember--Every child is different and they will react differently
Hi - my daughter on 232 had 4 rounds of HD Methotrexate - no issues, except mild mouth sores. Methotrexate is one of the most trusted chemos for Leukemia...it's better to have it, than to not ...not like that's an option - but actually, the HD Meth part was one of our easiest, except for staying in the hospital for a week with each one - due to clearance and fluids.... good luck -- b
Hi. I'm afraid my posts were probably some of the ones that scared you. I just want you to know, that although Justin did have complications during round 3 of HD MTX resulting in a seizure and PRES, he has completely recovered and we are finishing up treatment in May. And, the research suggests that the complications with HD MTX or no more likely than for kids getting escalating MTX, but the efficacy has been found to be superior. So, these terrible reactions are not the norm, and many kids are breezing through HD MTX without any complications. If I had to do it all over again, I still would have chosen to go through with the HD MTX, giving my child his best shot at a life-long cure. Hang in there, I know it's all so scary.
My daughter, on 0232, just finished IM with the 4 rounds of HD MTX. For her it was by far the easiest round yet. While the hospital stays are a pain, once she was home, her side effects were minimal.
I second the encouraging your ck to drink, drink, drink. We played a game to drink more each round to see how fast we could clear the toxcins. For her, each round cleared faster as a direct result of the increased water. Start the hydration even before you start the MTX.
Hope all goes well for you!
Just echoing others here, but DRINK DRINK DRINK! Our daughter who was 20 months when she received 4 doses of HDMTX cleared her's in record time. She averaged start to finish 48 hrs. We just forced fluids all day long. She had a NG at the time too, so we used it during the night to give fluids then too in addition to the I'V. We also pushed fluids at least 24-48 hrs after discharge which seemed to help with the mucositis. She also was getting L-Glutamine for mucositis prevention. I too was very worried about the seizures, but it didn't happen thankfully. Actually, it wasn't that bad of a phase. I don't know about the HD Cytarabine.
Best of luck.
Thanks guys for the advice!
Elle started receiving the HD MTX yesterday at 1:30 pm, so it has to run for another 2.5 hours or so. So far, so good. She is getting lots of IV fluids, plus we are pushing the fluids by mouth and she is getting extra fluids through her NG tube as well. She had a little nausea at the beginning, but otherwise seems okay!