Rare Cancer Support Forum

My daughter, Carly, was Dx @ age 10 months with choroid plexus carcinoma of the 3rd ventricle. She had a subtotal resection, followed by chemo, shunt
placement. She was inadvertently given a double dose of cytoxan and had to be in the BMT unit for several months. She is now a 12 year old survivor. She does have several late effects, and I would be happy to discuss tx, dx, and/or late symptoms with you! ~Bridget

Hi Bridget, It's so good to finally hear a good outcome for this type of cancer. Has she relapsed at all? Did you and her get tested for the p53 gene mutation? I would love to hear some of things she went through. Thanks

[quote="Bridget"]Carly does have some learning issues, but I wouldn't waste any valuable energy wondering about the "what ifs". You have so much on your plate already... how are you guys holding up? ~Bridget[/quote]hi bridget, hope u all had a great xmas & new year, we r all ok, tabitha had mri scan 2 weeks ago which shows tumour is being kept under control, we hav another 4 sessions of chemo, then will start radiotherapy in june which we hope will zap the remaining tumour, tabitha has learnt to crawl again! and is getting stronger day by day. we hav an assesment at a local nursery for children with disabilities in march and every week have physiotherapist & occupational therapist out to us. so all is good at the moment. chat soon nikki

Hi Bridget and NIkki, I just put a blurb up about my son Matthew who is almost 7. Still trying to figure out how to navigate this site. I"m struggling with this CPC. It's been a long road. we are in our 3rd recurrance. Just finished radiation which was very difficult for him. He is so tired, not eating and getting very skinny. He's so much older now and is annoyed and doesn't want to take meds. We have an MRI on the 19th of March to see what's going on. Very scary..0

How old was Matthew at diagnosis? Where was his tumor? Total resection? Shunt? It must be very difficult to deal with the relapses. At least during the initial diagnosis, ignorance is bliss. ~Bridget Mom to Carly dx choroid plexus 2/93.

Hi Bridget. Matt was 2 1/2. We live outside NYC so went to Columbia. we did head start II as I mentioned with shrinkage. Along the way he got a shunt. March of 03 was stem cell transplant. couldn't finish due to toxicity in liver and kidney's from hi dose chemo. he then had removal of 90 % of tumor. The IMRT radiaiton june/july of 03. It took awhile, but we got ourboy back. hearing loss so has a hearing aid. It's been a difficult journey since last summer with 2nd and now 3rd relapse. Tomorrow at his pre MRI check up i think they may do feeding tube again since he's lost so much weight. Harder now because he is so much more aware.

Carly had an ng tube for almost a year. She had so much nausea, etc....
Actually, looking back, it was easier than trying to feed her. Her tumor was located at the 3rd ventricle, so a 98% resection. Where is Matthew's?
She had hearing loss from cisplatin which came back (for no known reason). Did you have Finlay as a ped-onc? I know that Finlay is with us in LA now. ~Bridget

Yes, I am in LA. 2 groups that would be helpful to you are WECAN and the pediatric brain tumor site. The latter has a LARGE membership and is comprised of kids currently in treatment. There is also a pt. name Spencer who has had several relapses. I will try to find the email for his family. Brain stem location is very tough. Any possibility of the gamma knife? ~Bridget

Hi. I am happy to hear tabitha is doing alright. I am sad to report that my son Matthew lost his battle on April 30th. He had surgery to relieve pressure in his brain in the middle of March and never got his strength back. He fought hard for 5 years. I wish everyone the CPC the best of luck and you will be in my thoughs and prayers.

Kelly

Hello,

I am new to this board. My son, 2 weeks old at the time, was diagnosed with an Atypical Choroid Plexus Papilloma. He is now almost 3 months old and due for his first MRI next week. I was wondering if anyone had any experience with an Atypical CPP?