relapsed stage4s what can we do
 

Posts


Write a Post
12-02-09 01:05 PM
sarah langley
relapsed stage4s what can we do
Reply

my little angel has had this for a year now she had the standard cheamo for 80 days the rapid cojec protocol,at easter had the tumour removed the m.ib.g scan revealed only one small tumour remaining ,she then had hi-dose cheamo we were sure that this one would go ,and guess what three days into radio therapy she had relapsed with two new tumours to her brain anew one in her other knee and back in the original site,we were devastated they didnt give her long at all ,the fact that iot had come back so soon after hi-dose was the worrying factor,she has since been offered 2 new drugs irinotecan and temozolomide which seem to be having good effect the last m.i.b.g revealed that the 2 in her brain was now one and a dot ,the one in her knee has gone and we are currently waiting for an ultrasound on friday to see how the one in her tummy is doing she is being offered three more lots after this then we may be getting the m.i.b.g therapy we are still a bit in the dark and are trawling the internet to try and find any other help solutions as we live in the u.k we are not offered immunotheray want to know if this is definitely a way forward for us as we are hearing a lot about it over here has anyone been in our position

12-02-09 03:42 PM
dawnie
Re: relapsed stage4s what can we do
Reply

Hi Sarah,

I am so sorry you have to go through this, and I will keep your family in my prayers.

Have you been in touch with FAN over there? Families Against Neuroblastoma? This is a UK organization, and has many families who can help you, because they have been there, or are there now.

Linza will be a great resource for you, I'm sure, as this is her passion. It might be easy for us in the US to tell you what we would do, but I know things are quite different in the UK right now, so a group over there would be best suited to help you. You can find FAN on facebook at :

 

http://www.facebook.com/search/?ref=search&q=families%20against%20neuroblastoma&init=quick#/group.php?gid=102112264199&ref=search&sid=1291837377.1854161394..1

I know they have a website beginning as well, but I believe this is the best way to contact them.

Prayers for you family, with hope,

 

 

 

12-07-09 10:07 PM
woodbridge
Re: relapsed stage4s what can we do
Reply

Greeting from Houston, Texas. My child was also diagnosed with NB Stage IIB in 2008. Her treatment was at Texas Children's Hospital . Our child doctor - Dr. Russell is one of the renowed Doctor in Neuroblastoma. We have just meet with Dr Russell last Thursday @ TCH on my daughter's 6 month scan ..so far so good...Next CT-scan is on June 2010.  I also believed in healty eating..the body can repair those damages and kill tumor as well .My child's diet - lots of berries and fruits. Less or no meat if possible. Lots of vegetables.. Omega 3 cold water fish fillets & supplemental - panax ginseng. No McDonald kind of junk foods please.

My advise is -  be strong , stay focus and yes, it ok to cry .. I am a strong believer of Chemo - with a right combination of Chemo , it might just be able to control the tumour.

One of our friend's kid is going thru the MIBG therapy in Philidelphia, the treatment is continuous as of today and later follow by stem cell transplant.

 We will keep you in our pray , and god bless you & your family.

12-09-09 11:57 AM
dawnie
Re: relapsed stage4s what can we do
Reply

Also a note, irinotecan/temodar followed by MIBG therapy is also a standard of care for relapse over here. That was our plan at relapse as well, and has worked well for several friends of ours also facing relpased/refractory nb.