Anyone with experience of delayed response to ipi nivo combo please ?

Hi Scooby,

On Checkmate 401 at the Christie Manchester….ALT,AST, Gamma GT Alk Phos and LDH all going in the wrong direction. Even blood sugar elevated too yesterday- hope its not steroid induced diabetes to add to the list. Think nivo only side effect guide allowed higher ALT AST levels if you had liver mets but think mine are now borderline (at best ) for discontinuance per the formal side effect guidelines … Suppose I just need to get some things ticked off my list whilst I have the benefit of steroid energy.

Thanks for the reply, it does help to know you are not on your own dealing with this but I would not wish it on anyone.

Think NHS England are making things difficult to get ipi nivo unless you fit the original trial criteria as they are saying approved on the basis of trial population – so anyone with brain mets can not access the treatment in England.

Best wishes,

Deb

Hi Coneflowers,

Thank you for taking the time to respond

Am trying to construct a positive version of possible outcomes but that version of events seems to have had a bit of a kicking recently .. so your daughters story is encouraging to hear. Stable is good in melanomaworld but shrinkage is better- and as we both know growth and new tumours is scary awful…. but if you can go from that stable or less it is comforting to hear…especially after the disappointment of no treatment yesterday or for a minimum of a month given the need for steroid taper.

Like you say -trying to feed the soul with possible reasons to stay cheerful – as it does help me annd my loved ones..

Thanks again,

Deb

Thanks Jen-

 Just need to process it all then work out how to take advantage of the steroid bounce I guess. Hoping next scan has better news rather than confirmation of progression…but not confident at the moment .

Thanks for the hugs and good vibes.

Deb

xx

Hi Annie,

Thanks for the good wishes. Mri was clear for hypophysitis in the end but looks like I'm on the edge of steroid induced diabetes…Keep telling myself scan was only after two treatments -maybe third one will have made the difference.. but feel unlikely to get dose 4 . Hope your Dad is feeling a bit better. it is tough on the patient and their loved ones dealing with this terrible disease.

best wishes

Deb

Thanks to all for responding. I can usually look for thebright side but reading the docs body language think they have two possible reasons to stop meds- disease progression and grade 3 toxicity on rechallenge and the immunocore trial is all they can offer and only 50/50 to qualify.Til trial registered but not participating due to budgets/replication outside of USA centre of excellence.

Got home to new scan date 11/3/2017 so will not get dose 4 in before then given need to taper pred. Am fearful that this will be the trial endpoint for me- hence the blood screenining for the immunore trial.

Just crossing my fingers that the lead investigator will put some of the liver results down to the liver mets not meds and leave it as say a grade 2 and allow continuation on Nivo to give a chance of a delayed response but am sure he will have my best interests in mind before making a call.

Trials are difficult- if you only scan at 12 weeks and most respond by this point  then choosing the point of measurement almost dictates the recorded median response time- as faster responses gon unrecorded and if you stop treatment too early- later responses may also be missed – and might even be more expected if treatment postponed due to adverse events…

Will try to distract myself and hope my luck will change.Thanks for digging out the links, will have a good look and try and tell myself I can be a late responder.

Best wishes to all

Deb