Neuroblastoma Stage 4
 

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09-27-08 08:27 AM
Sunil Nair
Neuroblastoma Stage 4
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Hi Everybody,

I am Sunil Nair, basically from India and working in Dubai, UAE. My son who is 2 yrs and 11 months old has been recently diagonized with Neuroblastoma Stage 4. He was diagonized during the first off of september, 2008, from then on our whole world has turned upside down. My wife and I are in a traumatic condition,, not sure where to go and what to do. He is currently undergoing treatment in Cancer Institute (WIA) in chennai, India. They have just completed his first cycle of Chemotherapy.

Can somebody help me and let me know as to where we can go for some help. I have spoken to a few doctors in Children's Memorial Hospital, Chicago, MD Anderson Cancer institute, Texas. Everyone say that there is only 30 - 40% chance of survival. Moreover, we do not have any nsurance cover and the cost for the treatment is way beyond our reach. Please let me know if there is any charity organization, where I can try requesting for some funds.

Hope to hear from sombody

Regards

Sunil Nair 

09-28-08 01:07 PM
nysmommy
Re: Neuroblastoma Stage 4
Reply
hi i have recently found out that my 20 month old baby has neuroblastoma and here in california at the uc davis hospital they have a program called ccs that covers her treatment and everything 100 percent i believe im going to check it out more for you i just saw what you wrote and had to let you know that there is help
09-29-08 06:26 AM
Sunil Nair
Re: Neuroblastoma Stage 4
Reply

Hi,

Really appreciate your help. Please do let me know as soon as u find out. Thanks a toan and please pray from my son..

10-09-08 07:31 PM
Jennifer Click
Re: Neuroblastoma Stage 4
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You don't mention what stage your child's disease is, but if it is stage IV, you should see if the CCS program they have at Davis is also available at UCSF.  Kate Matthay, one of the leading NB docs in the US, is at UCSF.  Nothing against UCD--I got my undergrad degree there and love the place--but for stage IV NB it is worth the trip to the Bay Area to see someone who knows NB inside and out.

10-10-08 04:41 PM
gombyoe
Re: Neuroblastoma Stage 4
Reply

Hi,

Our son was diagnosed as stage IV NB when he was 2 yrs + 11 mths.  We currently reside in Tokyo, and initially we considered seeking treatment outside of Japan, since our preconception was that the US had the most 'effective' and 'agressive' medical treatments.  We have been fortuate enough to have been able to have the leading doctor for NB in Japan from the very beginning, but we also did our share of homework, and we decided to stay here for the following reason.  

I guess both the good news and the bad news is that basically all of the protocols conducted in developped countries are more or less on the 'same' track; obviously the tiny bits and pieces might alter according to each protocol (such as medication, dosage etc.), but in general, they are quite similar.  From what I have seen, the protocols in the US, Japan, and Germany are quite similar, and the results don't seem to have dramatic differences.  Thus, we decided to stay here to do our son's induction therapy.  Although I am not sure what kind of protocol your son is on, perhaps you can do some research on the protocols conducted elsewhere.  The handbook on this website has a comparison chart on protocols, or you can even ask your oncologist for some information from medical books.  You can even seek for a second opinion with other pedriatric oncologists in your own coutnry.  In case you want to change your current protocol, your doctor should assist you on that - one of the most important thing is that you can find a doctor who listens to you, says 'yes' when he can, and 'no' when he can't (of course, after giving you a good explanation!), and most of all, someone whom you and your wife can trust. 

I personally feel that as long as you can modify the protocol with your doctor (if necessary),  there is no need to leave India.  If this still doesn't make you feel at ease, and yet financial conditions don't allow you to travel abroad, try to find the BEST NB oncologist in India ( I am writing this under the presumption that your insurance covers you as long as you are in India).

There are other 'new' treatments going on, but the avialability changes according to each country - you can also consult your oncologist regarding such treatment options.  

I know it is not easy to make treatment decisions, but I wish you all the best.

10-15-08 03:42 AM
Sunil Nair
Re: Neuroblastoma Stage 4
Reply

Hi Maria,

Thanks for the post. We have also decided to stick on to treatment options in India, Us treatment is totally out of our budget, He is undergoing treatment at one of the renowned cancer institute in India. We are also in touch with a few doctors in the US for their advice and support. Guess this is the only option we have.

He is currently undergoing his 2nd chemo cycle and in the ICU at the moment due to a few complications. Just hoping for the best and praing hard. How is your kid doing, wish him all the best and will pray for him too.

I can understand the trauma you are going trho', this is a very bad sittuation and we are all left helpless. Wishing you all the best too.

 

Regards

Sunil

06-16-16 09:14 AM
vkiran
Contact required Mr. Sunil Nair
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Dear Mr. Sunil, I am resident of UAE and my 4 year son got diagnosed with Neuroblastoma. Now, I am thinking of taking to my home country India for the treatment. Could you please provide me your contact details. Regards, Venkata Kiran, kiran.gitam6@gmail.com.