MIBG experimental therapy

(bisera van cott) #1

After 4 rounds of chemo skeletal metastasis was not responding well so doctors recommended MIBG therapy.We did it 5 weeks ago and had MIBG scan yesterday which had the same curie score (18) like before the MIBG therapy.
Does that mean our chances are lower?We have meeting with the doctors next week but they put high hope in this MIBG therapy that now I ma not sure what they are going to tell us.
Anyone had similar experience?


(Sam Saffron) #2

I don’t think there are guarantees with any treatments, its super frustrating as a parent.

I think this probably means you are going to have to try a different treatment.

Where are you being treated? Are you in frontline/refactory treatment or is this a relapse? Have you done any genetic testing yet?


(bisera van cott) #3

Hi Sam,

Thanks for reaching out. We are being treated in Cincinnati Children’s although we are from Montenegro. Got diagnosed January 5th 2017 with stage 4 high risk.Came to Cincinnati January 21st. So yes it is frontline therapy.
Yes genetic testing was done. It is MYCN amplification with PTPN11 which makes it very rare, doctor said it is his first case with PTPN 11.

Very hard to accept all of this.



(Sam Saffron) #4

Hi Bisera,

It is one very tough journey. Keep in mind the MIBG therapy you got is not official protocol yet, afaik it is a new trial arm on COG, as with most NB treatments we are all participating in one sort of trial or another.

My guess is that they will recommend continuing with the COG protocol so an operation would be next followed by a tandem transplant, radiation and immunotherapy.

I would recommend you try contacting St. Jude’s and Memorial Sloan Kettering, both hospitals have access to stronger immunotherapy drugs and may have some advice. Additionally, I would recommend you contact CHOP for another opinion on genetic based treatments.

Its a long journey, wishing you lots of good luck, stay strong.

How old is your son/daughter?


(bisera van cott) #5

Hi Sam,

We had meeting with doctor yesterday and he said that after this round of chemo they will do the surgery and then one more chemo and new MIBG scan. He also mentioned that the MIBG did show some response and it shrunk primary tumor so after 2 more rounds of chemo it might show better response. If not they will do oral chemo with immunotherapy.
I was thinking to contact Memorial Sloan I just didn’t know how to bring it to our doctor and not offend him. This might be cultural since we are from Europe.
My niece ,I am her legal guardian, will be 4 in two weeks.

Thank you for recommendations.


(Sam Saffron) #6

You should definitely not feel that way, it is not offensive at all. Sloan simply have some drugs that no other hospital in the world has. If your oncologist also had access to them I am sure they would consider using them.


(Kyle Matthews) #7

I’ll simply echo that. Never be afraid to offend a dr in order to better understand how to provide the best possible care for your child. You are your child’s fiercest and most important advocate.