choroid plexus carcinoma

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Postby twotabs » Thu Nov 08, 2007 7:19 am

twotabs wrote: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


hello, all choroid plexus parents, we had the results of tabithas mri scan yesterday, it shows no sign of the tumour, so for now we just have to focus on getting her stronger and develop her walking. she will have her hickmanline taken out in a couple of weeks and next mri scan feb 2008. so we hope and pray that it stays clear. she still has ng feeding tube as she refuses to eat orally, we hav a lot of input from dietician and psychologist, who seem to think it may just take a long time for tabitha to eat again. am always here to listen & support any choroid plexus or brain tumour parents, keep the faith nikki,mum to tabitha, nearly 3
twotabs
 

CPC

Postby nhalford » Fri Jan 18, 2008 8:15 am

Hi, our son Ben now 2 and1/2 was dx with cpc mar 07 he had 95% of tumour removed in Frenchay (size of grapefruit) followed by 6 months of intense chemo, mri in sept 07 shown no signs of tumour, but follow up mri in dec 07 shown it had returned, just before xmas he had another op, where they managed to remove all visible tumour, he has been on oral chemo-etoposide for 3 weeks & going to start radiotherapy next week. We would be grateful of any experiences. Hope Tabithas next mri is positive!
Nicky
nhalford
 

Postby twotabs » Sat Jan 19, 2008 7:10 am

hi nicky, sori to hear about your son ben, but it all sounds like its going as well as poss. has he started radiother yet? tabitha sailed thru this, no tiredness, minimal sickness, just very burnt ears and bizzarely constipation! compared to the chemo it was a doddle! tabitha is well at the moment, next scan feb 11, results feb 15, its just one long waiting game. i worry constantly! how is ben now, and how did you discover he had cpc x nikki mum to tabitha 3 choroid plexus carcinoma
twotabs
 

Postby nhalford » Wed Jan 23, 2008 8:56 am

Hi Nikki, Ben started radiotherapy this mon got 30 lots of total spine & head. He doesn't seem too bad at moment, but glad you mentioned constipation as he hasn't been for 2 days & is usually regular!! We're stayin at clic house most nights comin home weekends & once in week for a break! He isn't too bad at the moment still eating,gets tired few hours in the day but has a bounce of energy late afternoon. It is a very worrying time, & comforting when talking to others going thru similar.
I think it was you who mentioned gene 52 mutation (i think it was called that!) have you heard anymore? Thinking of you, Nicky
nhalford
 

Postby nhalford » Fri Feb 08, 2008 10:55 am

Hi Nikki & all cpc parents!
Am sorry but realised it wasn't you who mentioned the p53 gene mutation (even got number wrong!) but if anyone has got any info i would appreciate it.
I didn't reply to how i realised there was something wrong with Ben, but i knew he wasn't himself for about 4/5 weeks getting clingy, fussy eater, but doctors said it was a normal 18 month old, he was also sick for 5 consecutive mornings but fine afterwards the health visitor said there was a bug going around with same symptoms but will check him if it goes on for over a week!! The last straw was when he couldn't stand properly & went back to walking around furniture (kept losing balance unaided). The hospital did act very quickly which was good!!
Ben has just finished week 3 radiotherapy losing hair rapidly, losing weight & tired in the afternoons otherwise coping o'k at mo!
Will be thinking of Tabitha on Monday, please let us know how she gets on, our thoughts & prayers are with you all.
Would love to hear from any cpc parents!
Nicky
nhalford
 

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