Optic Glioma and Chemo

[carroll]

hi amie- things are so so with the glassess. they are for protection from any eye injuries. she is doing awesome this weekend following her 3rd chemo! yeah!! thanks for asking. ann

[Shawna]

It was very difficult with Mia at first...she is only 2, so you can imgaine, "making" a 2 yr wear glasses was not easy. I actually took lenses out of baby sunglasses, and we would "practice" wearing those. She HATED it at first. By the time her real glasses came in, she was doing much better, but still not keeping them on all the time. Now, she asks for them or when I ask her if she wants them, she says yes. The only time she takes them off is when we are in the car and she gets bored. It was a challenge, but we made it and now she doesnt fight us at all...now the patch, thats a whole different battle!

[carroll]

can i ask what are the percentages of success-- stablizing or shrinking you all were given in regards to chemo for optic gliomas??

[Shawna]

We were told an 85% chance of the tumors becoming stable. Only 10% chance of actual shrinkage.

[LaurenAct513]

Well, here we are, 5 years post carbo/vincristine. Josh's tumor has started to grow again, but now mostly in the hypothalamus.

How many of you have had re-growth years after chemo? What therapies did they use? We aren't treating it yet, but I imagine will need to at some time in the next year. Thanks.

[keetmommy]

We havent had stabilty yet. Emma is on her 5th proticol. Sorry to hear of Josh's growth.

[LaurenAct513]

Wow, poor Emma. I'm so sorry about that. Has her vision been compromised? I hope not. I didn't know that they had 5 different protocols for treatment. Wow. I pray that they find something to work for her.

[keetmommy]

Yes vision has been very compromised, there aren't 5 tried and true protocols, we are currently doing one that has only been used in Canada by a few people...we are low on options. Hope that your son stabilizes and you don't have to do it again...how is he doing otherwise NF wise?

[LaurenAct513]

I'm so sorry you and she are going through all of that.

Josh is doing well NF wise other then the Glioma. He has CALS, and Liche Nodes, but no luckily plexiforms . He also is on the autism spectrum (PDD-NOS) and has ADHD. It is a challenge, but he is such a sweet wonderful boy.

[keetmommy]

I added you on facebook...I am friends with many of the other moms on this thread...
Emma also had her leg amputated last year due to NF...she has had a heck of a year...but we keep fighting....Glad you came back...I thought of you not long ago and wondered how Josh was doing?