Hello Ladies, I hope you are all keeping as well as possible. Please can anyone give me some information about having the 4th (Spring Booster Covid Vaccine), as I didn't have it earlier, as was on my second line of Chemo and have been advised to wait until 3 weeks after I finish my Chemo, (I've just finished it). Also I've been told I can start Niraparib drug within 8 weeks of finishing the Chemo as my CA125 has remained low. Has anyone had any experiences of this drug and how did you get on with it?
Thanks in advance for any information!
Debbie 😊
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Doughnut21
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Hi Debbie, I have been on Niraparib for two years now. They lowered my dose from 200 to 100, because of my numbers in my blood results. I have had good ct scans while being on this, so that is a good sign in maybe keeping cancer cells at bay. I had a few bumps in the road along the way and I would just take a short break off and then start it again. I am also BRCA negative. One more thing that made me laugh when I saw that you went by DOUGHNUT 21. My sister always called me doughnut over the years and my birthday is on the 21st of November. Just had to mention how ironic that is. Hope things go well for you with your treatments. Take care, Donna xx 😊
Hi Donna.Good to hear that you are still doing well on Niraparib. I hope your husband is well too. You inspire me!!
I'm on Niraparib since June 21 and well thankfully. My Ca125 went up to 21 this month so am a bit worried but have to keep things in perspective . Hugs from Galway Ireland
Hi Ann, thankyou for your reply. My husband has been doing well on his chemo treatments. We feel blessed that we are doing well. Sometimes, the CA 125 can go up if there is any inflammation in the body somewhere. 21 is still good and I think they get concerned if it jumps up dramatically. Thanks and well wishes and hugs to you too. Donna, USA
Hi Donna, thanks very much for your reply - you've been very helpful! I've been told that I will be starting 200mg dose of Niraparib soon, in the next few weeks, as long as my next blood tests are ok. (finger's crossed!) My CA125 has been lowered by the Chemo over the last few months, so hopefully it'll remain so on the Niraparib drug. I will let you know once i've started Niraparib, how I get on and will keep you all updated with my progress! I hope you are feeling as well as possible. Take care and be kind to yourself. Love, Debbie x P.S. Ha Ha that's ironic isn't it... My best friend nicknamed me Debbie Doughnut when I was at school and it stuck with me! LOL! x
Hi Debbie, i had a text invite to book my 4th vacc and I was having chemo but just waited til 3 weeks after chemo. I've never had any reactions to any of them. I remember feeling a bit nervous about it but it was fine.
I've been on 200 mg of niraparib for about 2 months. I'm finding it ok now, no side effects at all. I was exhausted at the beginning and low mood (not sure if that was side effects as a result of the shock of it all). It is much better now. You are monitored weekly for bloods and bp and then monthly. My bloods went a bit low to start with but not so much they had to do anything about it. And they are fine now. Oh, and the only other side effect I still get is i have to put a hat on when i go outside otherwise my head burns even when there is weak sun is behind the clouds. But it's no great shakes 😊 good luck with it 😊
Hi Jayniiee, thanks very much for your reply - you've been very helpful! I've been told that I will be starting 200mg dose of Niraparib soon, in the next few weeks, as long as my next blood tests are ok. (finger's crossed!) My CA125 has been lowered by the Chemo over the last few months, so hopefully it'll remain so on the Niraparib drug. I will let you know once i've started Niraparib, how I get on and will keep you all updated with my progress! I hope you are feeling as well as possible. Take care and be kind to yourself. Love, Debbie x p.s. thanks for the advice about wearing a sunhat even if the sun is behind the clouds, due to sensitive skin and getting sunburn on your scalp. Good tip!
I had my spring booster in May, 3 weeks after finishing one round of chemo and 3 weeks before starting a different chemo. I'd read that the protection would be better when not actively on chemo, and also that moderna was now recommended for those immunosuppressed. Had 2 days of flu like symptoms, then fine.
Thanks for your reply Saffery1. You've been very helpful. I've now booked my Spring Booster jab (moderna), for next week, so finger's crossed! I hope you're feeling as well as possible. Take care. x
I would ask your onc team about the best time for covid jab. I had my 4th booster about a month ago. Felt really rotten after it. I had Moderna.
I have been taking Niraparib for about 27 months. I couldn't tolerate full dose so now only take 100mg daily. It made me severly constipated. Nurse had to come out to give me an enema!
However, our bodies are all so different. I would recommend keeping a diary to record any reactions.
Hi Claire, Yes i'm in the UK. My consultant has recommended I have the Covid Spring Booster jab 3 weeks after finishing my last chemo treatment, but before starting the Niraparib PARP Inhibitor drug, so I've booked it for next week. (finger's crossed all is well) thanks very much for your reply - you've been very helpful! I've been told that I will be starting 200mg dose of Niraparib soon, in the next few weeks, as long as my next blood tests are ok. (finger's crossed!) My CA125 has been lowered by the Chemo over the last few months, so hopefully it'll remain so on the Niraparib drug. I will let you know once i've started Niraparib, how I get on and will keep you all updated with my progress! I hope you are feeling as well as possible. Take care, x
Hi, me again!Just remembered something else- chemo brain. I struggle to find words, am forgetful so have notes and lists everywhere and am generally slower at doing things. Also get tired easily. I now only work 2 days a week. Hope you don't have similar reaction.
But... I'm so thankful that I'm a survivor and feel that every day is a bonus and this drug is keeping me safe (mostly... rest of story for another time)
Eat well, get sleep and try to exercise and be kind to yourself xx
Hi Kaitlinsmum, thanks very much for your reply - you've been very helpful! I've been told that I will be starting 200mg dose of Niraparib soon, in the next few weeks, as long as my next blood tests are ok. (finger's crossed!) My CA125 has been lowered by the Chemo over the last few months, so hopefully it'll remain so on the Niraparib drug. I will let you know once i've started Niraparib, how I get on and will keep you all updated with my progress! I hope you are feeling as well as possible. Take care and be kind to yourself. Love, Debbie x
I started on 200mg dose but had serious problems with haemoglobin levels. Had 5 transfusions in seven weeks!. Anyway I took a break and started the 100 mg dose in Dec 21 and thankfully I have been really well. I had four vaccines but still got Covid 🫣. I was sick for a week... bad cold symptoms and tired for about three weeks .I'm fine now. I was actually hospitalised after the fourth vaccine...so Covid itself wasn't as bad!!!!. Keep in mind that we can all have different reactions but it definitely prevents serious illness.
I hope that you get on well with Niraparib..don't be afraid to get a lower dose if you have too.
Hi Seedlings, thanks very much for your reply - you've been very helpful! I've been told that I will be starting 200mg dose of Niraparib soon, in the next few weeks, as long as my next blood tests are ok. (finger's crossed!) My CA125 has been lowered by the Chemo over the last few months, so hopefully it'll remain so on the Niraparib drug. I will let you know once i've started Niraparib, how I get on and will keep you all updated with my progress! I have booked my Covid Spring Booster jab for 3 weeks after my last Chemo, as that's recommended by my consultant. (finger's crossed). I hope you are feeling as well as possible. Take care and be kind to yourself. Love, Debbie x
Hi Nicky, thanks very much for your reply - you've been very helpful! I've been told that I will be starting 200mg dose of Niraparib soon, in the next few weeks, as long as my next blood tests are ok. (finger's crossed!) My CA125 has been lowered by the Chemo over the last few months, so hopefully it'll remain so on the Niraparib drug. I will let you know once i've started Niraparib, how I get on and will keep you all updated with my progress! I hope you are feeling as well as possible. Take care and be kind to yourself. Love, Debbie x
Hi Nicky,I , like you have been on Niraparib 100mg.Im on it fifteen months. I was just wondering how long you are on it and has your Ca125 been stable?. Mine went up from 17 to 21 this month and I'm a bit worried but trying not to stress out over it as I haven't felt this well since before I was diagnosed in 2018.
You mentioned private messaging but I'm not sure how to do that🤔.
Good to hear from you. I’ll send you. I’ll send you a private message and then you can reply (if you want to. 🙂).
I started it in 2018 and my ca125 level has remained at 7. I’ve researched/take/do a fair number of other things to support my health. I don’t rely on hospital treatment alone.
Don’t worry about that small rise. That can be caused by a number of things. And body levels will naturally fluctuate.
21 is still a superb number! So hang on to the fact that you are doing so well just now.
If things get dative in people it (and not for all people), to start doubling. E.g. 8,16,32,64 etc.
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