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Juvenile Pilocytic Astrocytoma treatment - Carboplatin and Vincristine

LittleFive
Posts: 1
Joined: Apr 2015

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
Posts: 404
Joined: Jun 2012

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

Jakester6
Posts: 1
Joined: Jan 2018

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

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