Anyone on Selinexor that can share info?

[phil]

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 4 months, 1 week ago by phil.

[rabbit]

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

[phil]

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

Probably out looking for a July 4th turkey 🙂

[greenlarry]

I’ve not heard of this drug. I’m on dvtd, on the second cycle. Things are up and down. Good days, bad days, lack of taste and constipation from Dexamethasone/ Velcade.

[iainf365]

Hello. My Lenalidomide maintenance (line 2) stopped being effective last February after 48 cycles. I started Selinexor + Velcade + Dexamethasone (SVD) in mid-February (5-week cycle). My experience hasn’t been great. My pre-treatment clinic made much of the nausea and sickness. I was prescribed four different anti-sickness tablets. I was advised to take Haleperdol the night before my treatment. On the day of my treatment, now at home, I also took the other anti-sickness tablets, which included Ondansetron. One hour later, I collapsed in my chair and, according to my wife, had a mild fit. I came round a few seconds later to hear her on the phone calling an ambulance. The paramedics suspected a right bundle branch block (electrical irregularity) and took me to A&E. 24 hours later, I was admitted to cardiology, and 48 hours after that, I was fitted with a heart pacemaker. Ondansetron was the suspected culprit, as it is a very rare side effect. Bear in mind that many people take it without any ill effects.

I coped reasonably well with Selinexor, but along with Velcade and the Dex, the next two days were low-energy days, and I didn’t feel particularly well. I also had balance issues and blurred vision. In the end, I didn’t require any anti-sickness medication. My treatment ceased to be effective during cycle 6, 7 months in. Selinexor had previously been reduced from 100mg to 60mg and finally to 40mg, and Dex to 10mg.

I have just started my 4th-line treatment with Daratumumab. I was offered Isatuximab and Pomalidomide (IsaPD), one of the newly approved treatments, but stuck with Dara as it’s well-tolerated. I feel well and have no serious side effects. It will be a few weeks before I find out how well it’s working.

[Author]

Posts