Failed ipi nivo- grade 4 liver enzymes- in uk-suggestions for what next ?

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Failed ipi nivo- grade 4 liver enzymes- in uk-suggestions for what next ?

This topic has 2 replies, 2 voices, and was last updated 7 years ago by debwray.

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- March 27, 2017 at 1:13 pm
- Quote
debwray
Participant
Hi,

Had three doses of ipi nivo but late Jan scan was only after 2 doses due to side effects.

Jan scan showed progression from liver only to skull, spine, pelvis, lung and various lymph nodes.

Have had radiotherapy following urgent mri to spine but no further treatment since liver labs spiked when dose 4 was due. Amwaiting for further pelvic radiotherapy.

Converstions with oncology team now seem to focus on dealing with pain.

Need second ct scan to confirm interval progression – probably this week- then conversation with oncologist, an assuming scan will show progression again as seems likely given pain… and extra info he has from spine MRI.

So question is what next….. onc does not seem keen to treat with more nivo-due to liver enzymes.

Am BRAF wild type so that side is out of the question. Team started tests for immunocore trial… but think steroid use puts a lid on that…

Til is not an option here….think am likely to be offered dacarbazine chemo or palliative care-

Am guessing Keytruda/ pembrolizumab likely to fail if nivo failed.

Any advice / experience with treatment after failing combo very welcome.

Desparately seeking answers…

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- - March 27, 2017 at 11:15 pm
  - Quote
  maperny
  Participant
  Very sorry for what you are going through, Anon. It does sound a very tough situation. I think I read that Keytruda does work for some people when nivo hasn't and vice versa, although both PDL-1 they are not identical drugs. But someone else (Celeste?) may be able to comment on this better than me.
  
  Also, since you are having radiation, then now might be a good time to try Keytruda with the potential to improve the response.
  
  Good luck
  
  Maria
  - March 28, 2017 at 10:06 am
    
    Quote
    debwray
    Participant
    
    Hi Maria,
    
    Thank you for your kind words. Am struggling with the waiting and uncertainties. Have had no treatment since the end of Jan.. and in spite of studies that show benefits are still possible even if IPI nivo stopped early due to side effects, the advance in pelvic and spinal pain makes me think I am not going to be one of the lucky ones -in fact feel more like a super progresser at this point.
    
    Have pushed the button to meet the local MacMillan nurse with a view to starting contact with hospice palliative services -at least then can discuss options for the future and will know what is available to he!p .when and if needed. I can feel that little window of hope becoming ever smaller. Poor communication between the various specialist service providers is driving me nuts too. Sorry for letting off steam, just needed to vent.

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