Juvenile Pilocytic Astrocytoma treatment - Carboplatin and Vincristine

LittleFive

Hello - My 3 and a half year old son was recently diagnosed with a JPA on the tectal plate of this brain stem. The surgeon was able to resect 50% of the tumor and added that complete resection is possible, but may lead to long term effects, such as loss of hearing. His oncologist wants to immediately put him on a chemo regimen of Carboplatin and Vincristine. For those that do not know, these two drugs are a first line of defense in childhood tumors. They also carry with them the common side effects of chemo, including, in rare cases, hearing loss and possible secondary cancer. This is a benign grade 1 tumor, but it was large at the time of diagnosis. Due to the size and location, my oncologist does not want to use a "wait and see" approach. Considering the luck we had with the first surgery (no residual affects/up and walking the same day), my instinct is to pursue surgery, but that is against the wishes of the oncologist and surgeon. I absolutely hate the idea of giving my otherwise healthy kid a year's worth of chemotherapy. I'd really like to hear from someone who has gone through something similar. I'm interested in hearing from parents/patients that went through this regimen. I would also love to hear from those that have had aggressive surgery in the brainstem area and what the afteraffects are/were. Thanks in advance for your comments.

manwithnoname

laser

Check laser ablation as a possibility, Dr Danish I think, join a cannabis kids forum (facebook), some success with low grade tumors.

Jakester6

Hi LittleFive

Hi LittleFive

I was wondering what route you decided to go with your little one and what your outcomes have been? Our 6 year old boy is going through something very similar. JPA, about 70% removed, the remainder is on brain stem and "inoperable" and unfortunately, still growing. He's starting on a chemo regimen of Carboplatin and Vincristine next week and we can't help wondering if this is the right, necessary route.

Any advice and information would be appreciated.

Regards

Paul

JBall3

about to start chemo

My grandon was diagnosted with a JPA as well in December 2018.  10 months later, the MRI shows a reocurrance and this time it's on his brain stem.  They have recommended the same chemo for him that your son given.  We are about to start treatment and am curious about your outcomes.  

JBall3

Jakester6 said:

Hi LittleFive

Hi LittleFive

I was wondering what route you decided to go with your little one and what your outcomes have been? Our 6 year old boy is going through something very similar. JPA, about 70% removed, the remainder is on brain stem and "inoperable" and unfortunately, still growing. He's starting on a chemo regimen of Carboplatin and Vincristine next week and we can't help wondering if this is the right, necessary route.

Any advice and information would be appreciated.

Regards

Paul

Hi Jakester,  

Hi Jakester,  

We are in the same situation although we had a total resection.  10 months later, we are experiencing a reocurrence and because its on his brain stem this time and inoperable, they are recommending chemo.  How did your 6 year old do with it?  

 

Any advice or information would be most appreciated.  

 

Thank You, 

Kathy

KoyeKay

chemo therapy

Our 4yr old grandson was diagnosed with JPA in May 2019, surgery followed shortly thereafter, due to the location of the tumor, chemo will begin soon. 

 

Any information would be appreciated 

thank you