I wanted to let you all know that Josie's MRI showed no signs of necrosis. Thank goodness! Now they will wait and see what the pain in her legs does. They are considering cranking down her Vincristine. Thank you all for your answers!
Wonderful news! I hope they don't have to crank down the dose too much but that she is able to get some relief.
yaaay!!!!
Angela
Fantastic news!!!!
Nana
Josie's mom
I'm sure she is on Neurotin however have you tried adding Glutamic Acid to her daily meds. My daughter has really bad neuropathy from Vincristine. She takes 300 mg 3x a day of Neurotin however we added Glutamic Acid and it helps a lot. When we entered LTM we had run out and I thought I would see if it really made that big of a difference. That was the only month I had to give pain meds regularly with the Vincristine, since starting the glutamic acid. Ask your doctor there is a study in a New York hospital right now showing some promising results. My daughter is seven and about 55 lbs she takes a 1/2 of a tablet, 3 times a day. Some people crush it if they are little. We put it in a gel cap, because it gets mushy and grosses out my daughter. You can order it online at iherbs.com
It maybe worth a try. It supposedly helps with mucousis too. We started taking it in IM. With the first dose of methotrexate she had horrible mouth sores however after taking this she has never had another one even when the methotrexate dose got higher.
Larisa
Hi Larisa,
We started taking the glutamine powder after Justin had the mucositis in IM, but our np said we should probably stop after DI. I had no idea it would also help with neuropathy? Do your docs see any downside to taking it long-term?
Thanks,
Tonya
My understanding is there is a little difference between the two things however they are basically amino acids. Our doctor didn't say we shouldn't continue to take it but in an effort to cut back on some pills we take it 5 days before Vincristine and 7 days after then not the rest of the month.
I hope this helps.