Zejula update

[Samjane]

Well after a good start, 4 weeks on Zejula, and feeling quite good apart from insomnia....Sunday hit me like a truck!! Since then exhaustion has taken over, nausea has crept in (the little bugger), thrush in mouth which has left lack of taste and bit of water infection 🥺 so all in all crap! Bloods done today and blood levels have dropped again so neutrophils are now 1.4 wbc low too. So rang nurse and she’s gonna speak to onc tomoz at clinic regards to dropping to 100mg as he predicted last week at check up. Nurse said it can take up to 6’weeks for body to adjust and find its level and mines hit at 5 weeks!! Like a post chemo week is the only way I can describe it. Oh the joys, anyway see what he says tomoz and we will crack on with 100mg. Apparently it’s quite common for ladies not to tolerate above 100mg.

Much love to all xx

[Lyndy]

Thanks for sharing this Samjane..really interesting that these side effects are very similar to the ones I get from rheumatoid meds...similar process I guess. I am not on this med yet but hopefully I will get it at some point xx

[Hidden]

Well that is a good start and glad all is reasonably okay. Perhaps speak to your gp regarding a sleeping tablet to help you sleep. The whites will come up again but if the meds are being adjusted, better still

[Samjane in reply to Hidden]

Oncologist didn’t want to give sleeping tablets yet, that was last Thursday, but since Sunday I’ve gone the other way! All I want to do is sleep!!

[Hidden in reply to Samjane]

okay it probably will take a while to sort things out and settle down

[Lindaura]

Dear Samjane,

Interesting that both you and Ellsey updated us on your progress with Niraparib/Zejula today.

Insomnia seems to be a big problem, but the side effects that hit you this week are hard to tolerate, but hopefully you will settle down at 100 mags and keep cancer at bay while soon resuming a semi normal life. Otherwise known as the new normal..

Be well,

Hugs,

Laura

[Samjane in reply to Lindaura]

Thank you for your reply, yes hopefully because this has been like week after chemo! There’s always a new normal eh?! X

[Artgreen]

Thanks for sharing - it is amazing to see what we go through with side effects but hopefully over time they will recede. I hope it settles soon. x

[Samjane in reply to Artgreen]

Your welcome and thanks. Update stop tablets for a week, repeat bloods and take it from there as onc doesn’t want to reduce dose just get yet x

[Maxjor]

Wishing you luck with the same dosage. I am on olaparib and over time, the side effects I have have gotten much better. Some disappeared and others got easier. Doc also did not want to lower dosage. Hoping things get better for you soon and your bloods cooperate! oxox