choroid plexus carcinoma

[Bridget]

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

[tmp2624]

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

[Bridget]

What is the gene mutation you mentioned? Carly was dx 10 years ago, so I don't think they had access to that info yet. Does your daughter have a shunt? Our only serious long term medical issues were shunt related. You are certainly very fortunate to be at Johns Hopkins! I am in CA.

[tmp2624]

Well they are telling us that one reson she might have these tumors are because of a possible gene mutation. We have yet to be tested for it, but I have been hearing alot about it. And no she never had a shunt even with both brain surgeries. Johns Hopkins is great, Dr. Carson was on the team of surgeons who looked after my daughter.
How often does she get MRI's. Do they consider her cured of this cancer or do they tell you it could come back? And did they get the entire tumor removed?

[twotabs]

Well they are telling us that one reson she might have these tumors are because of a possible gene mutation. We have yet to be tested for it, but I have been hearing alot about it. And no she never had a shunt even with both brain surgeries. Johns Hopkins is great, Dr. Carson was on the team of surgeons who looked after my daughter.
How often does she get MRI's. Do they consider her cured of this cancer or do they tell you it could come back? And did they get the entire tumor removed?

hi bridget, i hav finaly found some 1 who has had cpc, my daughter aged 2 was diag in aug 2006, its been a terrifying time, but im glad i hav read that yr daughter is doin well now, is their any mor info u can giv me, as very few people seem to be able to giv me info on this as it is so rare in the uk, thanx nikki blip

[Bridget]

Dear Nikki,
CPC is extremely rare. When was your child dianosed? At what age? The rule of thumb (15 yrs ago, anyway) was that if your child survived to the age that equals 2x the age at diagnosis: they were "cured". At what locatin of the brain is the tumor? Resection partial or near total? I'd be more than happy to answer all of your questions!!!!
~Bridget

[twotabs]

Dear Nikki,
CPC is extremely rare. When was your child dianosed? At what age? The rule of thumb (15 yrs ago, anyway) was that if your child survived to the age that equals 2x the age at diagnosis: they were "cured". At what locatin of the brain is the tumor? Resection partial or near total? I'd be more than happy to answer all of your questions!!!!
~Bridget

hi bridget, thx 4 yr response, my daughter developed totally normally until july when she started to stumble when walking.my daughter was diag in aug, when she was just 21 months (she was 2 in nov) the tumour was in posterior fossa and 99.5% of tumour was removed. no one in the uk has given us the 2x age at diag guidline. only 15 children in the last 30yrs have had this type of tumour in england, so i guess its difficult for anyone to giv us any kind of prognosis with so few to go on, and obviously medicine moves on so quickly. my daughter started chemo in oct, she will be havin 7 days chemo, 14 days off, for the next 12 months, then radiotherapy after. she also has a shunt fitted and unable to walk with poor balance & co-ord probs, please tell me all about yr daughter and how u all coped as a family blip nikki

[Bridget]

Dear Nikki,
My daughter was 10 months old at dx. We had visited no less than 10
drs. with lots of misdiagnosed colic, ear infection, etc. The initial chemo was difficult, Carly also has a shunt. There is a newsgroup specifically for those parents whose kids are currently undergoing chemo/ radiation. That support was very helpful to me. Also seek a parent group of kids with cancer through your hospital. Our hospital also provided a psychologist to work with each family member. Do you have other children? Social workers are also helpful. It is a difficult time, try to take one day at a time, do not worry about what may or may not happen tomorrow, and try to do ONE thing for yourself each day (even if it's just a bath). One thing that helped me was a little physical exercise. Let your family and friends do as much for you as possible. ~Bridget

[twotabs]

Dear Nikki,
My daughter was 10 months old at dx. We had visited no less than 10
drs. with lots of misdiagnosed colic, ear infection, etc. The initial chemo was difficult, Carly also has a shunt. There is a newsgroup specifically for those parents whose kids are currently undergoing chemo/ radiation. That support was very helpful to me. Also seek a parent group of kids with cancer through your hospital. Our hospital also provided a psychologist to work with each family member. Do you have other children? Social workers are also helpful. It is a difficult time, try to take one day at a time, do not worry about what may or may not happen tomorrow, and try to do ONE thing for yourself each day (even if it's just a bath). One thing that helped me was a little physical exercise. Let your family and friends do as much for you as possible. ~Bridget

hi bridget, thx 4 all that advice, i hav made great friends with others in both the neuro hosp & the oncology hosp, i hav a great social worker, i do hav other kids, nathan 16 and jordan 11. freinds & family hav been great too. i am also a single mum! does carly hav any problems now, emotional, physical etc, thanx nikki blip

[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

[twotabs]

[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

[kellbell]

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

[Bridget]

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.

[kellbell]

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.

[Bridget]

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

[kellbell]

Hi Bridget. Are in LA? We spoke to finley when he was in NY and he also has a chemo protocol we may follow after results of this MRI on the 19th. Met with Dr's yesterday. HOlding off on NG tube. matt did have one when he was 3. I agree it is easier than fighting the eating battle. Discovered his BP is really high. Now on a new Med. He had issues with Kidney's suring stem cell transplant. Thinking it's his Kidney's again. matt's tumor was on Brain stem. They took what they could, but not all because it would have damaged him too much. That spot is still clear. Very anxious about this next MRI. He really is so frail now. Has that cance look. Is there anyone else on this site that you've been talking to that i could reach out to. Trying to see what drugs people are using. It's so rare. matt's had so many different types of chemo. we are running out of options.

[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

[twotabs]

[quote="kellbell"]Hi Bridget. Are in LA? We spoke to finley when he was in NY and he also has a chemo protocol we may follow after results of this MRI on the 19th. Met with Dr's yesterday. HOlding off on NG tube. matt did have one when he was 3. I agree it is easier than fighting the eating battle. Discovered his BP is really high. Now on a new Med. He had issues with Kidney's suring stem cell transplant. Thinking it's his Kidney's again. matt's tumor was on Brain stem. They took what they could, but not all because it would have damaged him too much. That spot is still clear. Very anxious about this next MRI. He really is so frail now. Has that cance look. Is there anyone else on this site that you've been talking to that i could reach out to. Trying to see what drugs people are using. It's so rare. matt's had so many different types of chemo. we are running out of options.[/quote] hi kelly,hav just read all yr other msgs, i too hav probs navigating this site!!! i know my daughter is in early stages of treatment,but if its any help she is on ICE protocol, ifosfamide, carboplatin, etoposide. this may not be approriate for yr son, but all information at this stage helps. i really hope he can be persuaded to hav NG tube, it will at least ease yr mind a little to know he is getting food & meds. good luck, speak soon nikki mum to tabitha CPC

[twotabs]

hi to all cpc parents, just an update on tabitha, we are waiting to go in for tabithas 9th cycle of ICE chemo, waiting on those blood counts to rise, again! she is very well, no major problems. now crawls very well, can walk around furniture, getting stronger day by day. very demanding, but that cud be just coz shes a toddler, who knows! will hav scan beg of jun, then start 6 weeks of radiotherapy mid jun time, not looking forward to travelling back and forth to hospital evry day, but it has to be don! i wish all cpc parents (and all others) all the luck & love in the world, stay strong and keep smiling, nikki, mum to tabitha 2 and half, choroid plexus carcinoma

[kellbell]

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

[twotabs]

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

hi kelly, i am truly sorry to hear about matthew, you and your family are in my thoughts, please keep in touch, i am always here to listen, love nikki

[twotabs]

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

hi kelly, i am truly sorry to hear about matthew, you and your family are in my thoughts, please keep in touch, i am always here to listen, love nikki

hello all cpc parents, well tabitha had her 9th cycle of ICE chemo and we ended up in hospital for 2 weeks as she had gastroenteritis! latest mri scan showed the remaining tiny bit of tumour has been kept under control, BUT the scan also showed a cyst that had attatched itself to the brain stem, so shes had another shunt inserted which links up with the original one! its amazing what these neurosurgeons do. we are now at home she is recovering well. due to start radiotherapy around the middle of july, our consultant seems very optimistic that this will work. we are keeping our spirits up and praying for good fortune. love to u all nikki mum to tabitha 2 and half

[Amilioto53]

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?

[twotabs]

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?

hello all choroid plexus parents. update on tabitha, she finished her 6 weeks radiotherapy 10 days ago, it went well, only side effects burnt ears and constipation (from the anti sickness), no tiredness yet, but we hav been warned this cud happen up to 6 weeks after. physically she is doing great, although still needs help to walk. her facial paralysis and eye squint also seem to be slowly improving (this was from the recent brain surgery to put shunt in for the cyst) just hav to wait now for mri scan end oct, which will tell us if all this chemo and radio have done the job??? we r keeping evrythin crossed. love to all of u out there, keep smiling nikki, mum to tabitha nearly 3

[twotabs]

hello there,how is your son now, wot did the mri show, i hope ur coping ok, my daughter has been thru a years treatment for choroid plexus tumour, at the moment she is ok, we are waiting for a scan end oct which will hopefully giv us good news nikki mum to tabitha nearly 3