Breathlessness and headaches

[Purplepansies54]

Hello everyone

Just wondering what your thoughts are on my current situation. I have been on Niraparib since July 2022 with no major side effects and for about the last 4 weeks I have been experiencing breathlessness on exertion, headaches, occasional nausea, extreme night sweats and fatigue. I saw my Oncologist at the end of March and he thought it was symptomatic low HB which I have had a few times before. I had a blood transfusion on the 3/4/23 and blood tests on 5/4/23 were at normal levels. However the symptoms described above have not gone away. I contacted my CNS who directed me to the Chemo helpline and as a result I had another round of comprehensive blood tests on 17/4/23. All came back within normal range. I am still having the same symptoms. Walking upstairs, loading the washer , having a shower all makes me breathless. I am seeing my oncologist again on Wednesday next week and will discuss it again with him. I just wondered if anyone has experienced similar and has any advice on how to deal with it or what direction to point my oncologist in? My Ca125 has been stable at 7/8 .

Any thoughts are appreciated,

Gillian

[Lyndy]

I am almost loathe to suggest this because it seems too much like coincidence but I went down with pneumonitis as a side effect of a Parp and trial drug recently. My oncologist told me that it was a rare but known side effect of Parp inhibitors.

Your symptoms do sound similar. Ask for a CT of the chest that’s how I was diagnosed.

We have to trust our gut when something doesn’t feel right… best of luck xx

[Purplepansies54 in reply to Lyndy]

Thanks Lyndy. I was going to ask for a CT scan anyway because it’s over 6 months since my last one. I appreciate your advice and hope you are recovering from the pneumonitus yourself.

[Skyeplus]

I mirror your experience. I have been on Niraparib since July 2022 and had to have an emergency blood transfusion because my HB was so low. I was also breathless and do get tired. HB levels ok now but I still get very tired, and and a bit breathless after doing any can of exercise, housework and so on. I’ve had a CT scan and chest clear. I wonder if it is just ongoing side effects. Hope you are ok xxx

[Purplepansies54 in reply to Skyeplus]

Thanks Skyeplus I did wonder if it was just a side effect. I think I will feel more reassured when I have had a CT scan. It is so difficult not to worry about every little thing isn’t it?

[Skyeplus in reply to Purplepansies54]

It is. I think it’s also about learning to live with it if you know what I mean. I am very grateful to the NHS, they have saved my life. It’s just taken me a while to appreciate fully that I will never go back to how I was and to come to terms with the fact that I am living (main thing) with a serious disease. I was stage 4 grade a when diagnosed and it had spread to me peritoneum but so far Niraparib is keeping it at bay. like you I also have to take Apixaban due to a pulmonary embolism.

I do stay positive and get a great deal of comfort from this group. Thinking of you and good luck with the CT scan xxxx

[Purplepansies54 in reply to Skyeplus]

Yep you hit the nail on the head there Skyeplus. I was also stage 4 at diagnosis with a large pleural effusion and am grateful to still be here and all the help from our amazing NHS but it is still a challenge every day living with the uncertainty of my diagnosis. I know so many others feel the same and like you said the support from this group really helps. Thanks for your reply and stay as well as you can!!

[Numi]

I’d advise pushing for a CT. I had increasing breathlessness that no one seemed concerned about as my bloods were fine, but a routine scan showed blood clots on both lungs! My oncologist said the cancer pre-disposes us to clots. I was put on blood thinners immediately and the breathlessness went very quickly.

[Purplepansies54 in reply to Numi]

Thanks Numi I have been on Apixaban for over a year following a post op PE so I would hope this would prevent any further clots but you never know. I am going to ask for a CT scan on Wednesday and hopefully this will either rule out or identify possible issues. I am glad you got sorted though!!

[Tulips66]

Hi Gillian, I only started Niraparib mid Jan & 2 weeks in I was taken off it again for 2 weeks due to low platelets. I was put back on it but at a lower dose. Even though I was diagnosed in 2019, been through 3 surgeries, chemo & maintenance twice, up to starting Niraparib, I had got back to been fairly fit, walking 7kms everyday & felt good. Over the last 2 weeks the fatigue is so bad somedays my arms & legs are dead weight & I have noticed I am breathless while walking up hills which hasn't been a problem for me before this. I only finished chemo in Nov & I dont remember ever feeling this weak. I did mention the fatigue to my nurse recently but she said the Niraparib shouldn't be causing it. I have had a Ct scan today & wont have results for 2 weeks. It sounds like you are getting breathless just doing basic everyday chores which means your quality of life is been affected & I think you should emphasise this to your oncologist on Wednesday & see if he can maybe try you on a different parp which might suit better. Are you having a Ct scan soon which will help ease your mind either ways. Let me know how your doing & hopefully you will get some of your life back. Take care X

[Purplepansies54]

Thank you Tulip66. I am definitely asking for a CT scan on Wednesday. Maybe I need to stop Niraparib for a bit. I can’t take Olaparib because I am allergic to it. I will discuss all of this with my oncologist. I hope your CT scan is clear and you start to feel better soon. I will post after my appointment on Wednesday and let everyone know the next steps.

[Rosado22]

All very interesting comments. I hope you feel better soon. My hay fever always makes me feel a bit breathless at this time of year and I didn’t realise that my own breathlessness was also due to my bloods. Waiting to speak to my oncologist who has been on leave as had emergency platelets and emergency red blood transfusions - three bags - in the last fortnight. I thought hospital were monitoring my platelets as only been on N a couple of months. I’m guessing now that it is up to me to ring for results. Living with things and making changes is key I think, a few of you mentioned this. I just thought I’d be back to normal, naively. I do quite enjoy though, a slower pace of life…..

[Purplepansies54 in reply to Rosado22]

Hi Rosado, it is all about making adjustments and adapting to what our new limits are but it is frustrating and as I said managing that little voice in my head that thinks every symptom is a sign of a recurrence. Enjoy your new slow pace of life and I hope you stay well on Niraparib.

[Leniko]

maybe be a CT scan to rule out any clots?

[Purplepansies54 in reply to Leniko]

yes hopefully tomorrow I can speak to my oncologist and get a CT scan booked in!