[philParticipant]

I’ve been on Selinexor + Velcade + Dexamethasone (SVD) since the end of February: Line 3, treatment starts on the Sunday night with Olanzapine (anti sickness) for 3 nights, Mondays with Ondansetron (more anti sickness) at breakfast, Dexi at lunchtime, Velcade at the unit 2 hours later then the Selinexor a hour after I get home then another Ondansetron in the evening.

I started on 5 Selinexor but that’s now been reduced to 4 and the Dexi from 10 down to 5.

At first it wasn’t too bad. Now I’m up to my fifth cycle and I’m getting bad side effects. The lack of taste and appetite started at C3 on a Tuesday and Wednesday. I can’t eat or drink anything because it makes me want to throw up so I go without food totally for two days. I only drink to take my support drugs and then I can’t stomach it either.

Now I’m getting that problem on a Thursday too so that’s 3 days without food. Thankfully on Fridays it comes back so I treat myself to my comfort food of Nutella on toast 🙂

It doesn’t end there. On a Saturday, without fail, I get really bad dizzy spells. So bad I’ve been put on Beta Blockers due to an irregular heartbeat on that day. I’m due to be fitted with a personal ECG soon to see what exactly is happening.

I also had spells of being tired but this week that’s gone up to fatigue and I spent most of Wednesday asleep.

So is anyone else on Selinexor and what’s your experience of it?

• This topic was modified 3 days, 19 hours ago by  phil.

[rabbitParticipant]

Hi Phil,

I don’t have experience of Seliexor, but there is a US based forum called SmartPatients. A few people there are on it. I suggest that you go to:

https://www.smartpatients.com/search?q=selinexor

I hope that that helps, especially if you can get suggestions that might ease the side effects.

All the best.

Rabbit

[philParticipant]

Thanks Rabbit. I’ve joined and posted the above but it’s not been published yet.

Probably out looking for a July 4th turkey 🙂

[Author]

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