Ipi/nivo Colitis Now Hospitalized :(

Hi,

A hospital admission as an emergency never feels reassuring, but as you say this is where your Mum will get 24/7 care and monitoring until the docs are convinced the colitis is resolving and the treatment for it is working. Your probiotic sounds fine.. Multi strain and lots of bacteria.

My IPI nivo protocol only has 4 3mg per kg doses in total followed by nivo only for up to 2 years so your Mum has already had more than enough IPI already to get her immune system into attack mode..hence the colitis.. And more nivo will help target her body on attacking the melanoma only..those with strong adverse reactions often have a better percentage response rate..a crumb of comfort for you. When I was considering tne combo was told higher risk of side effects than Pembro monotherapy and a 50% chance of an emergency hospital admission so this is unfortunately not that unusual.

The good scan results remain a fact.. They will get the colitis under control as experience in managing these things has grown. The docs know what works and when and if treatment escalation is needed.  You know what to query if things aren't improving fast enough so with abit of luck your Mum will be feeling very different within a few days . The big picture is good.. Treatment working, tumours shrinking..just need to get the pesky side effects under control and your medical team seem to be making moves by the book so am very hopeful that your mum will be much more settled soon. Hold fast and hang on..you know roughly what to expect.. And this does not mean your Mum will not stand a chance of getting a decent response from the combo.

My final IPI nivo combo has been delayed for 1 week as liver results still not down to grade 1_ but at least it will give me a week relatively itch and nausea free and not timed out of the trial…which is to see if docs experienced at managing side effects of combo have fewer high grade immune related adverse events. 

Best wishes to you and your family…try to turn down the panic , take a deep breath and work through it all , one day at a time . 

Best wishes

Deb

Hi Melissa.

Thanks for all the good wishes. Not surprised you were anxious when you gets phone call like that. IPI as a solo drug was originally given as an initial course followed by maintainance doses every 12 weeks or so. Its given as 3mg per kilo in stage 4 but is fda approved as 10mg per kilo in stage 3 even though adverse effects increase with dose and stage 3 folk have more responsive immune systems as less tumour related suppression. Still lots to learn about the best way to use these treatments,how to sequence them and even tailoring doses to individuals. Your mums doc seems to have wanted to be aggressive in treatment and has taken a view that hitting the cancer hard with both drugs would be of benefit . It does demonstrate IPI has her immune system fired up and hopefully things are getting a bit better by now.

Docs decided to give me another week off treatment to let ast and alt liver tests to get to below 2 times upper limit of normal. So prob last IPI nivo for me week on Monday. It must be hard to manage when side effects are so varied…and can be early or even weeks or months after the drug is finished.

Brest wishes

Deb

Hi Melissa.

Thanks for all the good wishes. Not surprised you were anxious when you gets phone call like that. IPI as a solo drug was originally given as an initial course followed by maintainance doses every 12 weeks or so. Its given as 3mg per kilo in stage 4 but is fda approved as 10mg per kilo in stage 3 even though adverse effects increase with dose and stage 3 folk have more responsive immune systems as less tumour related suppression. Still lots to learn about the best way to use these treatments,how to sequence them and even tailoring doses to individuals. Your mums doc seems to have wanted to be aggressive in treatment and has taken a view that hitting the cancer hard with both drugs would be of benefit . It does demonstrate IPI has her immune system fired up and hopefully things are getting a bit better by now.

Docs decided to give me another week off treatment to let ast and alt liver tests to get to below 2 times upper limit of normal. So prob last IPI nivo for me week on Monday. It must be hard to manage when side effects are so varied…and can be early or even weeks or months after the drug is finished.

Brest wishes

Deb

Hi Melissa.

Thanks for all the good wishes. Not surprised you were anxious when you gets phone call like that. IPI as a solo drug was originally given as an initial course followed by maintainance doses every 12 weeks or so. Its given as 3mg per kilo in stage 4 but is fda approved as 10mg per kilo in stage 3 even though adverse effects increase with dose and stage 3 folk have more responsive immune systems as less tumour related suppression. Still lots to learn about the best way to use these treatments,how to sequence them and even tailoring doses to individuals. Your mums doc seems to have wanted to be aggressive in treatment and has taken a view that hitting the cancer hard with both drugs would be of benefit . It does demonstrate IPI has her immune system fired up and hopefully things are getting a bit better by now.

Docs decided to give me another week off treatment to let ast and alt liver tests to get to below 2 times upper limit of normal. So prob last IPI nivo for me week on Monday. It must be hard to manage when side effects are so varied…and can be early or even weeks or months after the drug is finished.

Brest wishes

Deb

Hi,

A hospital admission as an emergency never feels reassuring, but as you say this is where your Mum will get 24/7 care and monitoring until the docs are convinced the colitis is resolving and the treatment for it is working. Your probiotic sounds fine.. Multi strain and lots of bacteria.

My IPI nivo protocol only has 4 3mg per kg doses in total followed by nivo only for up to 2 years so your Mum has already had more than enough IPI already to get her immune system into attack mode..hence the colitis.. And more nivo will help target her body on attacking the melanoma only..those with strong adverse reactions often have a better percentage response rate..a crumb of comfort for you. When I was considering tne combo was told higher risk of side effects than Pembro monotherapy and a 50% chance of an emergency hospital admission so this is unfortunately not that unusual.

The good scan results remain a fact.. They will get the colitis under control as experience in managing these things has grown. The docs know what works and when and if treatment escalation is needed.  You know what to query if things aren't improving fast enough so with abit of luck your Mum will be feeling very different within a few days . The big picture is good.. Treatment working, tumours shrinking..just need to get the pesky side effects under control and your medical team seem to be making moves by the book so am very hopeful that your mum will be much more settled soon. Hold fast and hang on..you know roughly what to expect.. And this does not mean your Mum will not stand a chance of getting a decent response from the combo.

My final IPI nivo combo has been delayed for 1 week as liver results still not down to grade 1_ but at least it will give me a week relatively itch and nausea free and not timed out of the trial…which is to see if docs experienced at managing side effects of combo have fewer high grade immune related adverse events. 

Best wishes to you and your family…try to turn down the panic , take a deep breath and work through it all , one day at a time . 

Best wishes

Deb

Hi,

A hospital admission as an emergency never feels reassuring, but as you say this is where your Mum will get 24/7 care and monitoring until the docs are convinced the colitis is resolving and the treatment for it is working. Your probiotic sounds fine.. Multi strain and lots of bacteria.

My IPI nivo protocol only has 4 3mg per kg doses in total followed by nivo only for up to 2 years so your Mum has already had more than enough IPI already to get her immune system into attack mode..hence the colitis.. And more nivo will help target her body on attacking the melanoma only..those with strong adverse reactions often have a better percentage response rate..a crumb of comfort for you. When I was considering tne combo was told higher risk of side effects than Pembro monotherapy and a 50% chance of an emergency hospital admission so this is unfortunately not that unusual.

The good scan results remain a fact.. They will get the colitis under control as experience in managing these things has grown. The docs know what works and when and if treatment escalation is needed.  You know what to query if things aren't improving fast enough so with abit of luck your Mum will be feeling very different within a few days . The big picture is good.. Treatment working, tumours shrinking..just need to get the pesky side effects under control and your medical team seem to be making moves by the book so am very hopeful that your mum will be much more settled soon. Hold fast and hang on..you know roughly what to expect.. And this does not mean your Mum will not stand a chance of getting a decent response from the combo.

My final IPI nivo combo has been delayed for 1 week as liver results still not down to grade 1_ but at least it will give me a week relatively itch and nausea free and not timed out of the trial…which is to see if docs experienced at managing side effects of combo have fewer high grade immune related adverse events. 

Best wishes to you and your family…try to turn down the panic , take a deep breath and work through it all , one day at a time . 

Best wishes

Deb