[joversonParticipant]

I started on DVD maintenance on 5/3 and really struggling with extreme nausea , and generally feeling unwell the whole time . I was hoping it was previously the chemo causing the problems but as I’ve not had chemo for 5 weeks now , so it’s obviously the daratumumab that doesn’t agree with me . I take 2 x 20mg dexamethasone on day 1 & 2 . Does anyone have a different regime eg – small dose of dexamethasone daily rather than concentrated on 2 days ? Any suggestions would be welcome. I may have the chance of second SCT but I was really hoping DVD would work for me. As things stand I can’t tolerate it

• This topic was modified 1 month ago by  joverson.

[joversonParticipant]

That should be can’t tolerate it

[mulberryParticipant]

I’ve been on DVD for 20 weeks. I’ve found the Velcade difficult all the way through and have had 2 dose reductions and still some neuropathy. The Dex (Like you 20mg on consecutive days with and after treatment) didn’t really affect me (except for blushing the day after) until this last cycle when I had my appointment & dex late in the day. I had initial headache and eye sensitivity to light after my first two doses of Dara, but nothing since.
Are you given omeprazol as an ongoing drug with DVd? This can cause nausea. Presumably your team have tried prescribing anti emetics.
TBH I’ve found Dara to be the kindest myeloma drug I’ve had so far, after the first two doses, but I know different patients respond differently. I hope your team come up with a plan to make it work for you.

[joversonParticipant]

I take 30mg of lansoprozole daily but no one has suggested this may cause nausea. I was hospitalised last weekend but still no further with causes of why I feel so ill. Had ultrasound as gallstones suspected but scan was normal. Endoscopy arranged. I had thalidomide 15 yrs ago prior to first SCT but don’t recall feeling this bad . It seems I’m the exception when it comes to tolerating the daratumumab! Will just have to hope my consultant comes up with a solution when I see him on Wednesday.

[joversonParticipant]

Anyone else had severe nausea etc on daratumumab maintenance? Anti sickness meds don’t work very well for me

[thejollynorthernerParticipant]

Hi
When I was on Dexamethazone I too struggled with 2 day doses so was moved onto my dosage over 4 days, 10, 5, 3 then 2 that eased the side effects drastically

Dave

[joversonParticipant]

That’s interesting, were you suffering severe nausea and other side effects ?

[thejollynorthernerParticipant]

No nausea but mood swings a plenty and sleep was affected greatly.
I found out Dexys Midnight Runners got their name from taking Dexamethazone to keep awake whilst on tour.
Every day is a school day eh lol

Dave

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