Niraparib and weakness

[ladybenger]

Hello to everybody and although this is my first time writing a post I have been following for some months as it is a great source of information and empathy.

I was diagnosed in March 2019 with Stage 4 ovc and have since had debulking and 2 lines of chemo due to a return on the peritenium. I am now on Niraparib and have managed 200mg daily for a month as I so want this to be my lifeline.

I was very weak and fatigued on the chemo, but the weakness I have experienced this week (after my covid jab) is so debilitating I can hardly stand up, with such pain in my lower back. I went to docs today to get my usual bloods and urine tested for onc and as they were concerned they made me see the GP who gave me an ECG and a good check over and nothing found.

I will call onc tomorrow once they have the bloods and see if this can be sorted. Even though I had a call with them last week and explained how I felt, but all they could say was this was normal and the symptoms should get better after a few months. I don't really want to feel like this for too long as it makes you feel you will never get back to any kind of normality. I do appreciate that I still have a life and I am thankful that I am still here.

I just wanted to know from all you lovely ladies if you have had the same fatigue and weakness whilst on this drug. I am BRCA negative so I know there is another parp I can have if this one doesn't agree with me.

Stay safe and keep doing such a grand job by posting.

Lady Benger

[Pianoplayer731021]

I am on 100 mgs, now , because the 200 dose was hard on my blood. Had to have a blood transfusion and so short of breath. I am also BRCA negative and my dr. said that niraparib would be the drug of choice if you are positive or negative. I don’t know about another parp. I’ll just have to wait and see. If you are really fatigued, your hemoglobin might be low. Your blood work will show that. They wanted me to have blood work right away. Call your onc to let them know. Hope you will feel better, Donna

[ladybenger in reply to Pianoplayer731021]

Thank you Donna for your imput. I also think that my body is wrecked with Chemo avastin and now the parp without any breaks.

Today I am not going to do anything at all and see how I feel then.

But I will call the onc later as I know my platelets were low last week.

All the best with your treatment

Chris

[Jacky5]

HiI'm on Olaparib and get very tired at times.

Do you think it could be related to the covid jab?

My husband and I both recently had it. The first was ok but after the second I felt like I'd been hit by a bus, ached from top to toe and was exhausted.

My husband complained too and had back ache .

I do hope you pick up very soon and all the very best with your treatment.

Liz. X

[ladybenger in reply to Jacky5]

Hi Liz

Thank you responding and I feel slightly better that you both also had a similar reaction, not that I would wish this on anybody. I think also my body has been wrecked by chemo, avastin, and now the parp without any breaks for the past 2 years.

I know it's a long journey and sometimes very hard, so I must be strong and be thankful that I am getting such good treatment from the NHS.

Chris x

[delia2]

Hi. I’ve been on Olaparib since April and by September I was really fed up with the fatigue. It was terrible through October and then started to get better. Now I’m fine. Hopefully you will start to feel better soon. You could also be anemic. Hugs.

[ladybenger in reply to delia2]

Hi delia2

Thank you for your response and it is encouraging (but not for the right reasons) that you have also had a bad time on the parp, I suppose we are all different and our bodies work at different levels, perhaps our bodies aren't as strong as others.

I am relieved to hear that although you went through months of bad fatigue you are now starting to feel better, so there is always hope and if the drug does the job then it's a small price to pay.

My bloods were normal for me (not brilliant anytime) so no iron deficiency.

Lockdown and shielding keeps us resting anyway so we are not missing out on too much apart from our families and friends.

Good luck with the drug and may you continue to go from strength to strength.

Chris xx

[Lesinbeds]

Hi Lady Benger

I was diagnosed in Aug 2018 with Stage 4 Peritoneal Cancer. I had 6 rounds of chemo then debunking surgery followed by another 6 rounds of chemo. I was given the all clear and was in remission until March 20 when the cancer returned. I had a further 6 chemos, responded well to the chemo but it hasn’t gone completely.

I was put on NIraparib in August 2020. I was taking 200g for 2 months but started to get really bloated, insomnia, fatigue, actually generally feeling unwell. My CA125 remains very good, it hasn’t gone about 11. I saw my consultant and she said to have a week off of the Niraparib, which I did. I was a little worried as I thought the cancer might start to grow again but she said there is no clinical evidence if you have a break, that this will happen. Also when I started to take the Niraparib drop to 100g, which I have done. I have pretty well since, obviously I do still have the normal side effects.

Last week I went for my Covid vaccine and since then I have really started to feel unwell. I have a dragging feeling on my left side, my back is really aching and generally feel out of sorts. I called my onc nurse yesterday and I went and had a blood test today. I am also stopped my Niraparib for a couple of days just to get myself back to normal.

It’s weird how I have had similar symptoms to you! It does make you wonder if it is the vaccine. I await my results later this week and will let you know the outcome.

You take care and keep strong, we’ll get through this! The little warriors that we are 😊.

Love Lesinbeds xx

[ladybenger in reply to Lesinbeds]

Hi Lesinbeds

Thank you so much for your response and it's weird that your cancer story is similar to mine. Mine was diagnosed ovarian, but is now peritoneal. Like you, I had a few months of no cancer when I was on avastin, but that didn't last, the cancer came back. even with avastin. Unfortunately when I was diagnosed I was nieve and didn't really understand the consequences of being stage 4 even though my onc told me at every consulation the cancer would come back. Its only now that I have researched and read information on this website that I realise the enormity and impact of this cancer.

Anyway getting back to my issues, I called the onc dept and they told me my bloods were ok but kidney function rubbish. But she did say the vaccine was 90% responsible for how I felt so that is probably the same for you. I had the pffizer jab.

I only wish someone had told me that at the time. But it still doesn't help you feel better and now I am just pacing myself to try to recover, not being able to stand for more than 5 mins makes you sit down and rest.

I want to persevere with the drug as I need it to work so I am reluctant to stop it and the onc dept don't seem to want to reduce it at the moment.

I only hope that they are right, that after a few months your body gets used to it and the side effects subside. But I see on here some people are still leading a normal life and working!! Its 2 years since I went to work and can't see that I will ever be able to return.

Keep in touch and let me know how you are getting on and if your bloods are ok.

We have to stay strong and live for the day and perhaps look back and see how far we have come.

Best Wishes Chris xx

[Lesinbeds in reply to ladybenger]

Hi Chris,

I too was nieve! You don’t actually realise how it is going going to inpact on your life. I feel I can’t actually plan things from one day to another. One day I feel really good and the next feel rubbish.

For 25 years I had worked full time, up at 6, home at five, do the dinner, housework, I really don’t know how I done it. Now I find it so hard getting up in the morning, I hardly ever get up before 9, then I can’t really rush. I know I have no reason too but I get so frustrated.

Before my cancer returned last March I was going back to work 2 days a week but now I can’t imagine it! Especially with this Covid.

It’ll be lovely when the summer comes and we can get out in the garden and potter! That makes you feel so much better and it seems to take my mind off things.

I do hope you feel more yourself soon. I too had the Pfizer vaccine and from what I read on this site so many women are having side effects like us. I too wish I had known, I would have still had it but as you say, we would have known what side effects to expect.

To be honest because it was a new vaccine I don’t think they knew!!

Any way, I await to hear my blood results and I’ll let you know. Here it is 3.30am not being able to sleep and I can hear the rain pouring down outside!! I think I’ll make a cuppa now...

Lots of love Lesley x

[ladybenger in reply to Lesinbeds]

Hi Lesley

I hope you managed to get some rest last night. I am always torn if I should get up and have a cuppa or just lie there worrying. My counsellor always says that worrying and beeing stressed has the same affect on your body as doing manual

work and therefore affects the fatigue.

I mirror exactly how you feel with not being able to plan ahead and the fatigue issues and staying bed and wonder if I will ever return to my job, getting up at 6am and getting home at 6pm, the thought of it makes me tired!

I still don't feel great but I am just taking it easier than normal. I know we shouldn't look back at how we were before cancer as that doesn't help our recovery and that person doesn't exist anymore. But I find that all so upsetting and think that period of my life was a previous life never to return. I expect most people on this community feels much the same.

Anyway let me know how you get on and just remember we are not alone.

Chris x

[Kkaren]

Good morning, following my second line chemo which finished last august the plan was to put me on niraparib. However due to an infection I was slightly late in starting on 200mg although the consultant didn’t seem overly concerned with this. I took it for a couple of weeks and then took another infection so she advised to have a few days off. Back on it the two or three weeks before Christmas and then everything fell apart. Horrendous anxiety, mouth ulcers, fatigue, bruising and blood spots. To cut a long story short I ended up in hospital for a week with s as chest infection and also my platelets had crashed to one! Another break until my bloods were better and started on 100mg a week ago. I feel quite breathless at times although my gp says my lungs sound fine. This morning I caught site of myself in the mirror and look bloated. Has anyone experienced this. I am terrified as I’ve had to have fluid drained twice in the past and don’t want to head that way again. I have found that I generally do what my body tells me so if you feel tired then just have a lazy day. I know how you feel even a trip to get bloods is a major expedition.

[ladybenger in reply to Kkaren]

Hi KKaren

Thank you for your response and I think although I have had a bad time with fluid removal and 2 lines of chemo, you have had a much worse ride, and I feel for you, with all the side effects you have experienced especially the mouth ulcers, I had those on my tongue for weeks each time I had an infusion.

The bloating is fairly normal I think especially is you have had debulking and a hernia on the scar, which I have. When I wake in the night my stomach feels so heavy and uncomfortable.

When I called the onc dept yesterday my contact told me my bloods were just ok, no sign of a B12 deficiency, but bad kidney function - which is always the same as I have chronic kidney disease, which also adds to my worries as any treatment always effects my kidneys. But interestingly she said it was 90% due to the covid vaccine, but nobody tells you that, I had the pfizzer jab if this helps anybody who may get the same fatigue.

I do hope the 100mg does the business for you and keeps you well without too many problems.

Take care and big hugs x

[Kkaren in reply to ladybenger]

Hi again. I don’t know about you but I have a mini meltdown each time something else pops up. The mouth ulcers are so annoying. I am an old hand with those as I’ve suffered with those since I was a teenager. The dentist told my mum it was adolescence and I would grow out of them. I’m 56! I understand your concerns about your kidneys as I had to have stents inserted and have twice ended up with a nephrostomy. I am my own worse enemy though as I don’t drink enough. I’ve not had my vaccine yet as I was told I was at no greater risk than anyone else? Told I was in group four whatever that is. Take care of yourself x

[ladybenger in reply to Kkaren]

Hi

I feel for you with the mouth ulcers espcially as you have had them for years. I couldn't speak with them ( my partner was pleased though!!) It seems nothing you can get relieves them, even that gel mouthwash and eventually I just kept using salt water washes.

Maybe we get more problems because of the kidney impairement, but as you said you get over one thing and then something else pops up, it does wear you down eventually with all the issues that come from this cancer. And you are also dealing with kidney ops which must impact you, did the stents help your kidney function? My kidney function before the cancer was 44 now its 25 so who knows what will happen. I know it's a balance of treatments and as my kidney specialist always implies that if one doesn't see you off the other one will.

Surely you must be inline for the jab, as you are clinically vulnerable, I would check, as when I went for my bloods last week I asked and they said I was going to be top of the list. I think my practice in Wiltshire is well on schedule so that may have some bearing on it.

Keep in touch and I hope you get your jab soon and don't have to experience this awful side effect.

Chris x