19month daughter
 

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08-27-09 09:35 PM
heavenk08
19month daughter
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My daughter was diagnosed in Jan. with stage 4 NB. We have finished 6rounds of chemo, surgery, and bone marrow transplant. We are currently about to start radiation for 12 days. After radiation we will be starting the new anti-bodies that were released in March. I was wondering if there is anyone out there that has had their child go through the anti-bodies to give me a better perspective on how it went. My daughter will be the first child at the hospital we are out to use the anti-bodies..

 Thank you for any information, its much appreciated.

08-28-09 11:19 PM
daveph
Re: 19month daughter
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Hi heavenk

 My son was diagnosed with stage 4 in Dec. and just returned home from the second week stay of the il-2 cycle of the ch14.18 protocol.  Mathew was the first patient at our hospital to recieve the antibody as well.  Mathew did not seem to have any issues with the GM-CSF by itself. when the ch.14.18 started it did bring on some pain,but the staff was very quick to give more morphine as needed.  We had a lot of issues weith Mathews blood pressure dropping. The infusion was stopped and started a few times on the first day but we were able to give all of the ch within the 20 hour max.  The remainder of the infusions throughout the week were a bit more regulated for side effects.  Mathew retained a lot of fluid the first day but this seemed to even out over the next few days.  Food consumption was almost non-existant as he would vomit almost everything that he took in.  After the infusion was complete he bounced back to his norm within a day and started eating a bit again. The IL-2 cycle has seemed to be relatively similar to the first cycle with blood pressure issues and fevers as well.  Due to the fact that he was not urinating enough and blood pressure was dropping with fevers into the 39 range the inserted a cathedar that seemed to help. We will have to see how things balance out over the next few days.  The medical staff at our hospital seems to be well prepared for this treatment and are keeping a very close eye for any issues that arise.  Mathew was also having some rash issues as well but were controlled with benadryl. With everything that I have read it seems that these side effects are fairly normal and seem to outway the pros with this treatment.

Good luck in the upcoming weeks.

Dave

08-29-09 02:15 PM
heavenk08
Re: 19month daughter
Reply

Dave-

 I know this is the hardest question ever but so far do you think it's worth doing? Nevaeh my daughter has had blood pressure issues since diagnosed and we finally about a month ago were able to get her off her blood pressure medicine. I hear that the blood pressure is a pretty big side effect to the point some kids have to be in ICU for a few days. How old is Matthew? If you dont mind me asking but what state do you guys live in? I'll be praying for Matthew and your family. Thank you so much for the information! Take care

 Sara

08-29-09 11:49 PM
daveph
Re: 19month daughter
Reply

Sara

 With all of the recent findings of sucess with the CH 14.18 I feel that this treatment is well worth it.  The medical staff at our hospital are so excited about this treatment and are handling it very well.  Mathew is being monitored very closely during the infusion of the ch 14.18 and the staff is adjusting the treatment as side effects are occuring. In our facility during the infusion nursing to patient is one to one.  Vitals were done on Mathew almost 40 times in a twelve hour shift.  Mathew will be 7 in October. We are actually living in Ontario Canada and are lucky to live relatively close to Sick Childrens Hospital in Toronto.  There is so much research and funding being done for neuroblastoma right now here that I am so thankful that we are here.  Where abouts are you living? How old is Neveaeh?  When are you starting radiation?  Mathew had 20 rounds of radiation, but no surgery.  I am sure that your doctors are aware of this as well but to be eligable for the CH 14.18 you must start it by day 100 of transplant. Mathew just got in on day 96 and another child at our institution started on day 99 I believe.  I know it's a hard decition but my wife and I feel that we have made the right one.  Hope all goes well

Dave

09-04-09 06:46 PM
heavenk08
Re: 19month daughter
Reply

Nevaeh is 19months old and we live in Portland Oregon. She has finished 5 sessions of radiation and only has 7 more to go. We are hoping to start the anti-bodies by the end of the month. I've been thinking alot about your son and family. I wish you guys the best!

 Take care

Sara

01-16-10 08:30 PM
jesse322
Re: 19month daughter
Reply

Hi Sara, My name is Jeff and I have a 3 1/2 yr old boy with stage IV neuroblastoma. We just had to stop our antibody therapy during the 3rd cycle because of a severe allergic reaction "severe cough". Doctors are concerned for an airway obstruction, swollen tongue etc so we ended up in the ICU. Also had some other issues like hives, fluid retention and low blood pressures. I'm just glad we got as much as we did which was about 7 to 8 infusions. would've like to have finished all the therapy but there is no information on how much you actually need. I deffinately reccomend it. we are being treated in Boston Ma, @ Childrens Hospital. and he is still taking accutaine. You can see my son on "You tube"  http://www.youtube.com/watch?v=4lO1A9VE8oo Good luck and stay positive!!!