Preparing for relapse??
 

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10-16-08 04:16 AM
Faithjm
Preparing for relapse??
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Hi

I am from Ireland.  My daughter was diagnosed with neuroblastoma stage 4 Sept 2007.  Her tumour was in her chest, which they say they removed 98% of it.  She is coming to the end of her treament is doing brilliant.  She is now on roaccutane.   

I would like to be prepare if she were to relapse. I asked what the treatment here is if it happens and I was told that she would be given some chemo but it wouldn't do much good.

 I looked into the antibody treatment at Sloan.  I spoke to the consultant yesterday and mentioned that if she was to relapse I think I would be going to the US.  He didn't take it very well.  He said "your comments are very serious and thoughts like that would be very damaging to you and your family".  He also said that treament is the same everywhere and I should not go around the world for what I can get here.

At the start of her treatment they asked me to sign her tumour over for research.  At that stage I was overwhelmed by my daughters diagnosis I didn't give it a second thought, I said they could have it.   They said I could have it withdrawn at any stage.  When speaking to her consultant I said I wanted it back he said it would be there if anyone needed to look at it.  I really dont think he took me serious. 

As I am from Ireland any treatment in the US would not be covered by insurance.  I am think of starting to fundraise here.

I am hoping that this never comes back but if it does I will have No options if I stay at home. I cannot sit around and do nothing if it happens and thats what they expect me to do.

Could anybody give me some advice.   Should I start to raise the cash?

Is the antibody treatment the best for relapse or can you tell me of any more treatments?

 Thanks so much for any advice you can give!!! 

 

 

 

10-21-08 10:24 AM
Donna Ludwinski
Re: Preparing for relapse??
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Hi--wow this is a loaded question!!! I apologize for the late response--I have been thinking about your question a long time!

First I encourage you to read (if you haven't already) the chapter on relapse treatment in the Parent Handbook (there is a print version as well).

Then, you might want to contact Memorial Sloan-Kettering for the advice of the doctors there about "planning ahead."

The hard thing of course is raising money for a treatment that isn't actually needed right now... it might be very difficult to raise enough interest from the general public unless you have access to some other means of fund raising.

I don't understand the doctor's comment "your comments are very serious and thoughts like that would be very damaging to you and your family"! What does he mean? Don't think negatively?

My son has relapsed twice, so I have spent a lot of time looking into relapse treatments. I am happy to share specifics if you want to know more about his treatments. 

I hope very sincerely you will never deal with relapse!


 

 

10-23-08 08:47 AM
Faithjm
Re: Preparing for relapse??
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Hi

Thanks for your reply!   I haven't had a chance to look at the handbook yet, my daughter is so active at the moment she barely lets me sit down.  I have contacted Sloan by e-mail, they sent me the cost & details etc.  I was thinking if it would be better do send all her information by post or whether to get a consultation with a doctor there. 

Family & friends are all willing to help with fundraising they are just waiting on the go a head from me. 

I really don't know what her doctors comments meant. Maybe he's thinking of whats involved for me.    I am extremely shy and doctors make me feel a bit intimadated so didn't really say too much more. Next time I meet with him I will bring someone with me.   He didn't even ask what treatment I had looked into.  He wasn't any way interested.  If I am to contact sloan again I will need him to write me up summary of her treatment and fill out a form and make sure her tumour is not going anywhere for research, he said it wouldn't be used any time soon because there is no research for Neuroblastoma in Ireland.

I will read the handbook. 

Thanks you so much for your response, other parents here will not talk about relapse there just happy that they got through the treatment and are better now so I don't really have anyone to talk about it with.

Hope your son is doin well !!!

 

 

10-23-08 09:30 AM
Donna Ludwinski
Re: Preparing for relapse??
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I am so glad to hear she is doing well and is so active now!

I forgot to mention an important point (you probably already know this) that Sloan does offer 3F8 antibodies as part of frontline treatment. In other words, she does not have to relapse to be eligible to receive 3F8 antibodies. They may encourage you to continue her treatment, but depending on how long it has been since her stem cell transplant--she may need high-dose chemo to prevent her immune system from prematurely forming a response to the 3F8 antibodies (called HAMA for human antimouse antibodies).They usually like to start 3F8 treatment within a few months of transplant.

Many people on this list have experienced 3F8 antibodies and can help you with information on that. There is also a chapter in the Handbook on coping with 3F8 treatment.

Best wishes for your daughter's continued good health!

10-24-08 06:08 AM
Faithjm
Re: Preparing for relapse??
Reply

Hi

She had her transplant in May.  I knew about the treatment in Sloan but didn't realise that this could have been done just after the transplant until she was going for her transplant,so now its too late for that. She is on her third cycle of Roaccutane so she's nearly finished all the treatment. 

I am thinking about starting to fundraise within the next few weeks.  Family who are interested with helping are asking to have a meeting with me to discuss the best way to go about it. 

 Thanks for all your info!!!

01-14-10 02:59 PM
KKronmal
Re: Preparing for relapse??
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Hello-

I am mom to a 2 and a half year old super-kid that was diagnosed with high risk stage 3 neuroblastoma in August.  He has completed 6 cycles of chemotherapy and a major 14.5 hour surgery, and during scheduled restaging we found that he has progressed to stage four with multiple bone metasthesis. We are evaluating options for second line treatment, and it looks like you've had more than your fair share of experience with these. Of course every kiddo is different, and the studies keep opening and closing, but what do you believe has been the most effective second line treatment for you?  And what advice do you have for us?  Thank you in advance. kathy@nelse.com

01-18-10 12:43 PM
jesse322
Re: Preparing for relapse??
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Hello, my name is Jeff from Boston Ma, My  31/2 boy named Jesse has stage IV neuroblastoma and just finished ch 14.18 antibody. I've been reading your post and would like to mention that you do have a few options for relapse. Childrens Hospital in Boston Ma, is offering several treatments for relapse, for instance MIBG therapy and severals others. Our Doctor is an expert in Neuroblastoma and could possibly help you or point you in the right direction. I feel your doctor may have taking offense to you for searching for other help. Remember the Doctor is working for you, don't feel imtimidated by them. Good luck in your journey!!! Try to reach the Dana Farber cancer ins in Boston Ma and mention Dr. Shusterman or go to vitals.com for doctor information.    

                                                                                                                                                                                          Jeff