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Going on chemo for optic glioma!

PhotoMomToFive
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My five year old daughter was diagnosed with NF almost a year ago via blood testing after we found a glioma on her left optic nerve. She has no other signs or symptoms. She just had her second MRI to follow up on it and it had grown 6 mm in a year. The opthamologist also believes that she has some visual field loss and we were refered to an oncologist. He wants to start her on a year long chemo treatment and I'm scared out of my mind. We have three (soon to be four) other children and my husband is set to deploy within the next 5 months. Does anyone have any experience with this? How badly will this effect her?? I'm so full of questions right now. Thank you.

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Surgery Glioma Falls Carboplatin

17 replies

sweetiecat

I wish you the best of luck and I am proud of your family for serving our country. I have never had to deal with that. In the service do you have the opportunity for a second opion (spelling ?). I have read on here many parents prefer chemo over radiation. Wait and see what others say about it, I may be wrong. I will pray for you! That must be really hard as a parent and wife to deal with all at once.

mommyone

Hi there-- my dd was dx with nf at 6 months. She was dx with bilateral optic gliomas at 4 yrs. She has lost all vision in the left eye and a lot in the right (20-/400). We started chemo in Decmeber 08- carboplatin and vincristine. The tumor grew while on the protocal so we swtiched to vinblastine in April and the tumor is now stable. She has done very well on chemo- we are very lucky in this aspect. She has not been ill at all. We have a great oncologist and neurologist. Please any questions you have. Also try the ctf board- tons of people with huge amounts of knowledge and advice.

bevobod

Hi.
I am a 29 year old female and I was diagnosed with NF as a baby, and also grew an optic glioma on my left optic nerve. At that time, the doctors thought it best to remove it so it didn't reach the optic chiasm and cause blindness. Thus, I am blind in my left eye. When I turned 15 another optic glioma formed on my right optic nerve.
For this, I went through 18 months of chemo. My personal experience with that was the following. I did get very very sick and lost a lot of weight. I did not loose my hair but it thinned out quite a bit.
I became very sensitive to smells, so if you do choose to pursue this route, be mindful of that.
Since then, I have had no growth with the tumor at all and have 20/20 vision with glasses. Please feel free to ask me anymore questions!

Mommy2kodantj

I have a 4 year old son who was diagnosed with NF in 07. He was diagnosed wth Optic pathway gilomas oct08 and has been getting chemo for it since dec 08 he has about 7 months left. So far no growth. He has tumors on each optic nerve. He cant see out of his left eye much at it all. Hes also starting to have BO and has had high hormone levels for his age. We go tuseday to get results of some endo tests.

Butterfly914

Hi
My 9 year old son has NF and was diagnosed with an optic glioma in early June. We started chemo July 1st. Carboplastin and Vincristine. We go in every week for his treatement. We've been told that he will have to do chemo for a year and a half. He has not been sick, but he did lose his appetite and he complains about being tired and of his legs aching often. He had to miss a couple of treatments becasue his anc counts were to low. He has not lost his hair. So far were ok. As ok as you can be with this diagnosis. I hope that this is helpful.

~Blessings to you and your family

Mocow

My 2 year old daughter has NF1 and started chemo a month ago for extensive optic gliomas in both eyes (she has lost vision in her right eye, the left is functioning within the normal range - they are trying to save the vision in the left eye).
She is handling the chemo well so far (she has only had three treatments - once a week - Carboplastin and Vincristine). She has lost her appetite but apart from that no other obvious side effects (though still waiting to see if her hair falls out).

luvmyNFboys

My son was diagnosed with NF 1 in Feb 09. But he had the cafe au la spots since about a week old. My husband also has it. He has a optic glioma on the right optic nerve that was pushing his eye out 3mm. he can only see light and dark in his right eye. In April we started chemo or carboplatin and vincrstine. once a week for 13 month. We are about 7 months into it. He has done amazingly well all things considered. His last MRI showed the tumor shrunk. The docs are hopeful that he should get most if not all of his vision back. His hair has thinned but you cant really tell because it is changing to a more blond color. He doesnt really get sick. It is a low dose and that is why they do it over a longer period of time. Do you have family and friends near by to help out? When we go to treatments we are there for approx 4 hours. It has been longer. It all depends on how backed up they are or how long it takes to get his meds from the lab. I know during RSV season they only allow the child and one or 2 adults. At our clinic they wont allow extra children to come. So I dont know if you plan on taking some of your other children with you. Some families here do. Best of luck. If you need any support or having any other questions please let me know. You can email me at chemo 4 kyle at yahoo dot com

God Bless you and your family at this time. And my depest thanks and appreciation to your husband for serving and to you for supporting him.

Brittney

tumbug

My 15 yr old son was diagnosed at 3 yrs with optic glioma. He was legally blind in the left eye 20/200 but the right eye was fine. We go in 2x a yr to the opthamologist and have mri's 2x a yr also. The tumor has stayed stable all these years. Last time we went in his vision had changed to 20/60. They cannot explain it. The tumor hasn't changed. Maybe just watch it for a while and see what happens.
My deepest gratitude to your husband for serving and protecting our country.

muffinturner

My daughter is doing a 70 week trial of Vinblastine. She receives it once a week by Port-a-Cath. She has had some hair thinning and is tired the rest of the treatment day but is generally doing very well. We are due for an MRI and are anxiously awaiting the results. Our oncologist told us that the goal of treatment is to stabilize the glioma before vision loss occurs.

Best wishes to you and your family!

strawberry_chick33

That sounds exactly like me. Only I was 1 1/2 when i was diagnosed. For me i am perfectly healthy and happy living now. Im not sure if i was a special case or what but the worst thing i have is total blindness in my left eye. Plus my growth hormones were screwed up so now im really short. Im 17 and only 4'10. Oh well i dont mind. Life is still really normal. Hopefully your daughters story turns out this well.

muffinturner

Latest MRI results are good! The tumours are all stable. Neuro-ophthalmologist not as good; there is some permanent damage to her vision (she sees about 20/60) and we're not sure about peripheral vision loss yet although there is likely some. Chemo is still going well. No side effects other than some hair thinning. She has been approved for a PET scan to monitor growth of tumours on the peripheral nerves at four levels of her spine. It's a long waiting list but hopefully it will provide more insight.
:)

aztiley

HI. My 13 year daughter has the same condition now. She is through the chemo and is very dificult for her. I would like to share information with you.

PhotoMomToFive

Thank you all for your responses! I'm really grateful for the wealth of information and support on here. I've been 'away' from the computer over the last few weeks. Our newest addition was born on the 30th of Oct. so I apologize for not responding sooner.

We decided to wait on her next scan before starting treatment. The scan is at the end of the month and I'm really starting to get nervous. Her opthamologist says that she has some extensive visual field loss but we can't tell if this is a new development or one that occured recently. I really feel like her eye is bulging more now that before but it could be in my head. When we went to the neurosurgeon he told me that chemo is usually good at only prolonging the enevitable (loss of the eye) until the child is older. Do any of you guys know if this is true?

Thanks again everyone!

mie

I also have an optic glioma in the right optic nerve and lost my left eye because of one. The tumor on the right optic nerve is beginning to press on the nerve and affecting my vision, I was told last Friday that they would send me to the best hospital we have here in Denmark for the radiation treatment of the tumor. I am obviously very worried as there are many nerves around the tumor which can be damaged by it.

There are no doctors there have said anything about chemo treatment and I actually have not heard about that before I read it on this site.

Is there anyone who can tell me what the difference is between radiotherapy and chemo? What are the risks of chemo? and what was the outcome of your chemo treatments?

spiritedapj

Do I have news for you.:) My daughter was dx with an optic glioma in her left orbit at 2 1/2 after getting hit with a play telephone to her left eye and blinded her immediately (I think; we still don't know when she lost vision :( in that eye. No one could decide what to do: surgery, chemo, wait and see. Oncologist was saying chemo, the medical board was saying wait and see. We 'waited and saw' and continue to do so. We started her on a natural whole food supplement regimen and ever since then (now it's been 2 1/2 yrs) the tumor and cyst have stayed stable with some shrinkage and she continues to be a happy, smart cookie (she's in a Vanguard G/T program in kinder) and we keep praying that everything will stay stable. I'm glad we were not forced to go through the medical treatment way but we did fight our battle with just about everybody. We know things may happen in the future but now we have an alternative approach that we feel confident about. Good luck and I'm sure you will also find your best approach as well.

luvmyNFboys

Our doctors have said nothing about prolonging the inevitable at all. They are hopeful that he should regain most if not all of his vision. I have not heard that just because you have an optical glioma you will lose your eye. Hmmm...

Oh and congrats on the new little one.

PhotoMomToFive

The neuro used it more in a sense that if you have a glioma that begins to affect your vision. I'm glad you haven't heard anything about that, this guy was a bit too big for his britches. It was obvious how highly he thought of himself. Maybe he has his facts askew.

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