Netupitant - any experiences?

[Lou53]

Hi everyone, as ondansetron didn't do the trick for me with nausea on my first cisplatin and gemcitabine treatment, I have now been prescribed netupitant. Does any have experience of this drug please? One of the worst side effects for me was incredible headache (maybe triggered by ondansetron or the nausea?)) and headache is noted as one of the more common side effects of netupitant so I am a bit nervous.

Thanks,

Louise

[Katmal-UK]

Have you asked for/tried Cyclyzine? Only thing that worked for me - worked a charm too.

[Lou53 in reply to Katmal-UK]

Not yet Kathy but I did note it from your previous reply which I thank you for and I will come back to it with tem. Netupitant was recommended by consultant pharmacist as more effective than ondansetron. It's been challenging to negotiate with them as no face to face meetings were offered with weekly clinic fully booked and I have just not had my usual energy to challenge them this week.

Just wondering if anyone has come across it.

Thanks for all your replies - you give a lot of hope.

X

[Lou53 in reply to Katmal-UK]

Just looked up cyclizine and I think the netupitant is longer lasting (up to 5 days as opposed to a few hours). They are also asking me to hold off on adding in any metoclopramide in case that is triggering the headache. I guess I will find out in the next couple of days how I respond. We are all guinea pigs ha!

[Alifit]

Hi Lou,

Netupitant is one of the drugs in the tablet I take an hour before chemo. It’s called Akynzeo and also contains a similar drug to Ondansetron - Palonosetron. I only have it on the day of chemo and it lasts 5 days. I did get a mild head ache, but put it down to dehydration and the chemo. It was easily sorted with Paracetamol. I tend to feel dizzy, but it stops nausea for me.

I hope you find something that works for you - I do get fed up with all the side effects.

Best wishes, Ali x

[ellseybellsey]

Lou,

I have Emend on day of chemo, then 1 in the morning for the next two days, I also start on odansetron evening of day two then start steroids from day 3 for 5 days.

I still got severe nausea but al least not being sick.

I can honestly say Cisplatin has been harder than Carbo.

Hugs Ellsey xx

[Lou53]

Thanks Ellsey, Ali and Kathy,

Just to let you know that I had a good review with the nurses and doctors before the treatment today and went ahead with the netupitant and palonsetron. No signs yet of any nausea or headache, so already better than my first treatment🙂. Thanks all for getting back to me with your experiences.

Louise X