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Kelly73
Posted by

Can you give any information about care offered in this country for an eleven year old child with DIPG. She was diagnosed on August 2nd.. she is currently living abroad. 

Thank you

DIPG

Fiona-Macmillan
Posted by

Hi Kelly73

Thanks for getting in touch and welcome to the online community. Currently in this country first line treatment for a DIPG tumour is usually radiotherapy. Surgery is also not usually a viable option due to the areas of the brain that a DIPG tumour affects.

The Brain Tumour Charity is also funding some clinical trials into DIPG that are worth having a look at. There is also a phase two clinical trial running in the UK and Europe called BIOMEDE that you could look at.

NHS choices gives further information and provide links to government information and who to contact if someone wants to move back to the UK for treatment. It’s often easier to call them directly as the guidance can be unclear in parts.

It’s difficult to comment on healthcare abroad but the clinical team will be looking at all potential options for treatment.

We always encourage asking questions and thinking about second opinions if there are any aspects of treatment offered that anyone is unsure about. Unfortunately, because this is a challenging diagnosis there are often difficult decisions that need to be made.

If you want to talk any of this through then call our Support Line on 0808-808-0000 and talk to one of our nurses about this we are open every day 8am till 8pm.

Best wishes and take care.

Fiona Macmillan Information Nurse Specialist

Kelly73
Posted by

Thank you so much for your help.

my daughter and family were left with a terrible diagnosis and no support. Fortunately friends and family have been as helpful as possible without knowledge.

Thanks to Macmillan they have been in touch with a group in Malaysia and are now feeling less desperate.

The links you have sent will be very useful.

I have always been a supporter of Macmillan, now on the receiving end, I cannot praise you enough.

DIPG