Taking Niraparib but getting aching thighs in muscles is this normal

[babs1120]

I had ovarian cancer in 2002 I had surgery and Chemo but it returned after 19 years in 2021 in the Peritoneum high grade 3c. After 6 sessions of Chemo I am now taking Niraparib for 6 months without any side effects until about 3 weeks ago when I started with pains in my thigh Muscles and find they get worse at night and walking up stairs. If I stand still and don't move I don't have it. Is this normal or am I suffering from something entirely different which has nothing to do with taking Niraparib. I am 70 years old and in good health apart from Cancer. I have only joined the group today and have read lots of posts which are very helpful. I look forward to hearing any replies.

[Tulips66]

Hi Babs, I only started Niraparib myself on Mon so sorry I cant help you. So far I haven't any pains. I had no side effects at all for the first 4 days but both yesterday & today I have severe heartburn which is making me feel nauseous. I should have known the good days I had wouldn't last. Maybe ring your CNS on Monday & see what she says. Hopefully its only a short blip in your treatment & it can be fixed 🤞

[babs1120 in reply to Tulips66]

Thank you for you reply, I hope you heart burn settles down, I take lansoprazole any way so I didn't suffer from this, My oncologist said I could take Gaviscon but not within 2 hours of taking the Niraparib. Check if you can take this.

[OvacomeSupport Partner My Ovacome Team]

Dear babs1120,

I'm sorry to hear that you are having some aches and pains.

You might find it useful to have a read of our booklet about targeted therapies: ovacome.org.uk/targeted-the...

You'll notice in this booklet that the list of common side effects for Niraparib includes: indigestion, stomach pain, loss of appetite, nausea, vomiting, constipation, diarrhoea, irregular heartbeats, feeling short of breath, abnormal liver function, dry mouth, mouth sores, altered sense of taste, back pain, muscle or joint pain, feeling tired, headache, dizziness, anxiety, sleep problems (insomnia), sore throat or rash.

It's really important to keep your clinical team updated of anything like this, so they can help you manage things and confirm based on your own personal situation that it's nothing to worry about, so please do let them know.

You can also call the Ovacome support line on 0800 008 7054 if you have any questions. We are open Monday to Friday, 10am to 5pm.

Best wishes,

Jo

Ovacome Support

[babs1120 in reply to OvacomeSupport]

Thank you I will read the booklet

[Rai_Nakoa]

hi Babs!

I have been on Naraparib since September of 2021…and I do find the same issue. I have had nights that I wake up within every hour due to my hips or knees even aching so badly.

Like you, was in great shape up until the Cancer diagnosis and worked in construction, etc. Was out of hospital in just less than 24hrs after full debulking surgery, was golfing again on week 5 following surgery (all be it that it was only a short par 3 course….lol)….so it’s not as if I don’t have a good amount of pain tolerance and want to be active😊

I can only advise that if I do not stay hydrated as much during the day, the aches can be much worse. I have been super diligent in hydrating more now that it’s winter (I tend to want a hot tea rather than water when it’s cold)….and that does seem to help (this is just my personal experience of course).

That being said, I was diagnosed as stage 4 in Jan 2021 with a CA125 of 16,083…. So if the Naraparib keeps my CA125 at the existing range of 21-26….and there is no evidence of disease at this time…. I have conceded that this is something I am willing to deal with 🥰

In my experience, some of the side effects took months before they cropped up, and have now resolved with small changes to hydration and activity, etc.

Hoping you find some resolve of the issues/side effects

Trish

[babs1120 in reply to Rai_Nakoa]

Oh dear I feel for you walking up every hour, mine doesn't feel like its bones but muscles, I have told my team and they said they would keep an eye on it and may see if it's arthritis in the hips causing the muscle to ache. I drink lots of water during the day but now you mention it it's worse on days where I have been out and not drinking as much.

I too am willing to put up with it if its keeps the Cancer at bay. They didn't do any debulking surgery on me as they said it wasn't possible I only had Chemotherapy and still have 2 small tumours left. Thank you for you reply and hope yous settles down.

Babs

[FlowerRose]

I have also had similar joint and muscle pains since starting the same in 2020. They're very bothersome and slow me down. I'm "only" 54 but body acts much older I've come to tell people that I'd rather be here and alive to feel those pains than not here to feel them at all! It's just the new, slower, post treatment me, that's all. You'll get used to it, i hope.

[babs1120 in reply to FlowerRose]

Thank you for your reply, It's reassuring to know I am not the only one and that I may have another Ailment. It is something that I can put up with But I will mention it to my team as I don't want to suffer with something that has nothing to do with the Niraparib and I could take something to prevent it. I too would rather be here with pain than not be here. Take care from Babs