Hospitalised after second ipi/nivo

Hi VeronicaP,

Sorry to read about these tough times for you and your husband, I am sorry that I have no advice to give you, as I am awaiting my second Ipi/Nivo treatment myself. 

I do hope things improve quickly, best wishes,

J

Hi VeronicaP, I have no personal experience to add but I wondered if this video of Dr Pippa Corrie talking at the melanoma patient conference in June 2019 might be helpful.

https://youtu.be/f1MxlEqTbnE

Best wishes

Hi VeronicaP, If you read my profile you will see my journey. I had 2 x cycles of Ipi/Nivo before side effects got so bad and I ended up hospitalised due to diarrhoea. My treatment was IV steroids and a dose of Infliximab. As my side effects were classed as serious the Ipi/Nivo treatment was withdrawn. I was devastated being taken off the treatment as I believed it was my only hope as before the side effects kicked in I was having a really good response. I was in hospital for nearly 3 weeks and discharged just before Christmas last year. I started Dab & Tram in January this year and have had a complete response. Try not to worry too much, there is always hope.

I too had a very bad reaction to ipp/novo after just 2 treatments.....if there are no underlying causes such as infection. You should be asking why are they not using steriods to treat him?  That is the normal course of action and calms things down very quickly 

Finally he was prescribed steroids yesterday evening and had the first dose this morning. A lot more cheerful, bloating has reduced, appetite is improved and sickness seems to have resolved! 

Oh I am so pleased.....I know they must rule out any other underlying cause before they can prescribe steroids. But at last he’s on the mend x

I went for my second dose of Ipi & Nivo today...  After an ECG, they told me the treatment would be suspended for a while "not necessarily permanently" due to my high heart rate and "deranged Thyroid".  My consultant said she had never seen a thyroid rating as high as mine -which is apparently off the scale.

The treatment is 24 steroid pills in the morning for three weeks, plus 2 propranolol, 2 carbimazole & 1 prazole.  I think I'm going to rattle when I walk!  They are concerned that I might get some type of infection which could lead to other complications, so the consultant gave me her own personal number to call in case I can't get through to the emergency desk...

It all seems so serious, but as always I feel fine.  

J

Double post - oops!

Hi Sailor2, well I hope you’ve got some good tunes going around your head that you can play the percussion to. I’m glad that they are giving you  personalised treatment but that must seem a bit scary as well.....unless she was good looking  and you were your usual charming self !!

I’m glad your feel fine and that’s the thing to concentrate on when a blip happens. Sending a virtual hug.

Left hospital Sunday, abdominal bloating got worse and very scary, readmitted Monday (10 hour wait in A&E) 

Apparently the antibiotics (Co-amoxiclav) killed all gut bacteria. There are others that would have been better: it is so important to recognise that patients on immune therapy have specific needs.

Now improving and eating well but obviously very weak. No dietary advice except “soft food”. I have researched and asked him to stop caffeine and stick to low fibre. Any other ideas?

Set to discharge Friday but still on iv steroids today