ch 14.18 soon to get, any advice?
 

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04-27-09 10:47 PM
Eileen
ch 14.18 soon to get, any advice?
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I don't write on here very often, but I have some questions about a topic that is on many of our minds lately. 

My son Wyatt, (1 year old, stage IV, NMyc amp), is day 74 post BMT.  Today we were told that we will hopefully be starting the ch14.18 Antibody Therapy in a few weeks. 

I am asking if anyone has any advice who has gone through this, for what we should expect going into this.  We start the re-staging tests next week.. in hope they will get the okay to start us on the protocal soon after.  We were told that his counts will go down again and he will be immune-suppressed again... is this true?  Will we also need three or more lines? (Wyatt has a double Lumen Hickman... and they told us he will likely need to have one or two PICC lines put in, in addition to his Hickman... is this true?  Is there anything that we should know to ask the doctors about this? 

Thank you ahead of time to anyone who can comment on anything in this message.

Eileen Kamp

www.caringbridge.org/visit/wyattkamp

05-01-09 11:08 AM
Daryl Dunn
Re: ch 14.18 soon to get, any advice?
Reply

Ellen,

Our Son Andrew (age 5, Stage iv) was chosen for the CH14.18 study and we just finished it in January.  We only needed a double hickman but it may be different for a one year old.

During our treatment, we experienced low blood pressure when the two drugs were combined.  The doctor's stayed on top of it and controlled the blood pressure through water and protein bollaces (not sure that is spelled correctly).  It seems like we did juggle the lines with only having the double hickman but we never had another line or port put in and we were never in PICU.  The lot of medicine we were on seemed to give the kids more side effects then the other lots and the study was suspended for a couple of months until they investigated the side effects with each patient and their doctor.  Our Doctor was very upset that the study was suspended because he has seen positive results.  Fortunately, the study has been reopened and is now an option on your roadmap.

Andrew's counts did go down but not to the neutropenic level.  He never received blood transfusions or immune system boost while going through this, but as you know, every child is different.  Andrew did experience stomach pain the first day, vomitted a couple of times, and then was OK.  We were on pain meds as well.

Thanks,

Daryl Dunn 

  

 

 

  

05-01-09 11:08 AM
Daryl Dunn
Re: ch 14.18 soon to get, any advice?
Reply

Ellen,

My

Son