Small progression of lepto whilst on ... - The Roy Castle Lu...

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Small progression of lepto whilst on keytuda, advice and treatment options

juliepoolie01 profile image

Hi to the wonderful Inspire community,

Mum had her scan results on Wednesday and was a mixed bag. i need to get my head round what it means and what treatment options are available and what i should / could be pushing for.

Mum has been on Keytruda for nearly 8 months, during this time the lung has shrunk alot, the liver met has got smaller and the brain has remained stable (what they can see on the MRI) i think it has improved as some of mums symptoms completely disappeared.

On the last scan there is a slight increase on the brain, 1 mm.

The main consultant was away but the consensus at the moment was to continue with Keytruda as it is controlling the main tumour very well and is reducing the liver. The increase is so slight they feel the Keytruda is doing 'something'

First a question then ideas around treatment options and when

Is there any chance after this time there could be a small increase then decrease again? Or does the increase suggest it can only ever remain stable again or increase again? Would this suggest the Keytruda is failing?

I asked about Radiation therapy and they said this was a 'big question' they would ask. The area on the MRI is not in a safe place so i think gamma knife would be out of the question.

What does this leave? Whole brain radiation? would they do this AND immunotherapy at the same time? Or does Immunotherapy have to stop first?

Would anyone suggest WBR now to try and control / reduce the lepto whilst she is still robust and healthy? My thoughts are yes. Her main tumour is well controlled, only other Met is reducing and no other Mets. This fight has gone on for 2 years now and we are not ready to give up.

Im in the UK and the NHS works very differently. We have a consultant who i believe will look outside the box but i need to be informed and robust when i speak with him. I need him to know i am aware of all the options and fight Mums corner, she wants to live so i need to do this side of the fight.

What does everyone think of IT chemo? Is this an option.

All and any experiences / ideas / advice / Information gratefully and warmly received.

Julie xx

2 Replies

Check if you can go and see Prof Lindquist at the Cromwell for advice re the possibility of SRS to the brain.

He is one of the best Neuroradiologists / surgeons in the world.

He will tell you if the lesion/ s are really safety targetable or not.

RoyCastleHelpline profile image

Dear Julie

Apologies for the delay in responding to your query. It is encouraging that the Keytruda is still acting. In regards to your query, as you probably know it really needs a specialist to assess the full clinical picture and in discussion with the multidisciplinary team to offer the best possible treatment for your Mum.

I have placed a link here below from cancer research UK on whole brain radiation:

This link is our booklet on Brain Metastases:

If you wish to discuss anything our free nurse led helpline number is 0800 358 7200.

Wishing you all the very best.

The Roy Castle Support Team

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