Honored Kid

Ivaylo G.

Age 12
Ivaylo G. Kid Photo

Location

Nice, AL, FR

Diagnosis

Non-Hodgkin lymphoma

Date of Diagnosis

February 2016

Status

No evidence of disease

Treated At

IGR Gustave Roussy Archet 2 LaTimone

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My Story

 I am writing to you as I am trying to help of my 10 years old boy Ivaylo.
We live in France , my son was diagnosed with Anaplastic Lymphoma kinase-positive stage IV in February, 2016.
-We have done chemo ( protocol LMB 2001 , COP- 2/12/16, COPADMN -1 - 2/22/16, COPADMN -2 - 3/14/16, CYVEN -1 - 4/6/16, Methotrexate - 4/28/16, CYVEN -2 - 5/5/16).
-Radiation of brain done 6/16/16 - 18 Gy.
-PET scan from 6/24/16 - recurrence in lungs.
-Then clinical trial - protocol LDK378X2103 done - 7/7/16 -PET scan from 9/15/16 - recurrence again - Ceritinib Dose increased to 550 mg daily
- Bone marrow transplantation dobe 2/14/17
- Ceritonib stopped on 1/12/17 sec to high liver transaminases ( given Vebe on 1/23 and 1/30 )
- PET scan from 3/10/17 - recurrence in lungs, bones , 60% of lymph system and new lesion in brain.
Seems now here is nothing else we can do in France.
So my boy is in a very difficult situation and we need any info regarding clinical trials available here and we would appreciate greatly and forever any help, any consultation and any additional info regarding where else to look for help and whom to contact regarding this matter.
Thank you so much for reviewing this message. 

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