Well some more good news I started Niraparib last night 300mg, the information leaflet said taking them before you go to bed means you’re sleeping if nausea kicks in.
I will be on weekly blood tests-and monthly review with oncologist and be scanned 3 monthly due to ca125 being unreliable at reoccurrence. I am hopeful it will keep the beast away for a long time.
Ellsey xx
Hi Ellsey, I'm glad you started your niraparib. I take mine at 9 0r 9:30pm before bedtime. I take anti sickness as well 30min before niraparib and it does the trick. I'm on my 4th month on 300mg. my blood test is well behave as I'm worried about my platelets going down as I'm taking the highest dose. So far so good. I hope you will be the same. Are you brca negative? All the best
Luchie. X
Luchie yes I am I was originally dx with ppc but after surgery they believe it started in the Fallopian tube. DX High grade serous 3c. Just going to take anti sickness med as I didn’t last night and had nausea.
Ellsey xx
Yes take some every night until your system is used to the niraparib. That's how I do it. For the first two months I take it in the morning when I get up and at bedtime. They told me I can take up to 3 days a week. But I only take twice a day, sometimes I just need 1 before I take niraparib. Hope you feel better soon with the nausea. Xxx
Thanks Luchie I’ve just taken it, and I will take one first thing in the morning and see how I go.
Ellsey xx
Ok please let me know how you get on.xx
Good stuff. I was due to start today but I have a chest infection so it's delayed a week. We'll be able to compare notes. 🍀💐😘
I hope you get well soon from your chest infection and get started on Niraparib very soon.
Ellsey xx
All the best with your treatment and I wish you many years of remission
Hi,
I’m reading your post with interest I started Niraparib just before Xmas. Had 2 lots of bloods taken and they haven’t been in touch so I hoping they are ok! I am on 200mg, first week was nausea and headaches. Then improved, very rarely get nausea now and when I do I take anti sickness tablet and all ok. Only thing I’ve found a pain is a dry mouth which is getting much better, and insomnia which is also improving. I find drinking plenty helps with any bowel issues too!! All in all I’m tolerating it much better than chemo and quality of day to day life and great compared to chemo!!
Hope you have good response, I’m seeing my consultant next Thursday for first review.
Take care
Sam x
Hi Ellsey , I started Niraparib Just before Christmas but only 200mg , so far bloods Ok after weekly blood tests .Side effects tolerable , bit of a headache if I don’t drink enough water and the dreaded constipation which seems to follow us ladies around .Good luck with them and may they give all of us a better quality of life .xx Julia
Well,
We are all watching your progress with rapt attention. Most of us, who haven’t already started, are hoping to start as soon as our present Chemo completes successfully.
I am pretty used to taking anti nausea meds prophylacticlly so that shouldn’t be too difficult and lately I wake up with a headache on Carbo and Caelyx, but paracetamol seems to take care if it.
So, I am enthused.
Hope you stay well.
Hugs,
Laura
I’m interested to hear about your progress. I’ve been on it since June. The doses were difficult at first but settled down after a couple of months.
One of the weird side effects is not being able to enjoy the sun, Factor 50 and a hat are a must. Particularly annoying as I’m going on a sunshine holiday at the end of the month. Hey ho.
Hope it goes well for you
Good luck and hope this holds it for a very long time. Please keep us updated. I’ll let you know when I’m next at the Royal Surrey and if you are around perhaps we can meet for that coffee this time x x Di
Perhaps we should start a Royal Surrey Group! I'm with Dr E. At the moment I'm on Rucaparib and seeing someone monthly. There next Monday for bloods and Tuesday for appointment.
Hi Rachel - that sounds like a good idea. I’m next due there at the beginning of feb. I’m under Dr M.
I am with Dr Essapen on 6th Feb at 9.40.
Ellsey
Not due until 12 feb. Anyone there then?
Everything crossed that it works well for you xx
Good luck Ellsey I hope you sail through it with no side effects, and it gives you many many years of remission!! Fingers and toes crossed and big hugs, Liz xxx 💖
Best of luck with it, Ellsey. May it keep the beast at bay for a long time. Xx. Maus
Good luck! I also hope you get years of remission with it. It sounds very promising. Love Alex x
Very best wishes for you . I started on Niraparib 200 mg mid Oct 18 & have tolerated it pretty well . So much better than chemo ! Symptoms have come & gone and I didn’t need to take anti- sickness
tablets . My blood pressure is raised ( a side-effect) . I have to take my Bp at home too & report back but it’s not high enough to have to reduce the dose or stop it .
Good luck .
Mary x
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