Niraparib delayed side effects: I had strange... - My Ovacome

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Niraparib delayed side effects

rosebine profile image
16 Replies

I had strange side effects on 200mg after about a month in that I was ravenously hungry all the time even after eating big meals. Went down to 100mg and side effects went. Been on this dose for 4 months and the last three days the hunger has reappeared. Anyone else had side effects kick in after months? Obviously cant reduce dose further so alternative is to stop!

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rosebine profile image
rosebine
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16 Replies
Realistic profile image
Realistic

Hi Rosebine,Does it matter if your hunger pangs are more than normal. Hows your weight, l know we dont

want to be overweight, but if the treatments working perhaps it might be worth sticking with it. But if you've got other side effects, then it might be worth having a word with your team.

Hopefully its just a temporary problem.

Sending love & hugs SheilaFxxx

rosebine profile image
rosebine in reply to Realistic

Hello Sheila, its actual hunger pain like a gnawing. stuck with it for nearly 3 months last time and couldnt take it any more ! Such a relief when they disappeared on dose reduction.Dont know if the treatment is working or if Im still NED because of last chemo.

I ve eaten loads today,and still starving hungry, I will be the size of a house soon ! I find it hard to get to sleep because Im so hungry

Realistic profile image
Realistic in reply to rosebine

You poor girl, as if we don't have enough to worry about, without side effects. Please get some proper advice. To be honest lm heavier than l ever been really, but lm well hopefullyAnd l do think it helps our general well being.

Well thats my excuse and lm sticking with it.

Try filling your plate up with lots of fresh vegetables Chicken , fresh salmon. Might just help l like raw 🥕 carrots not very exciting l know and home made soups very filling really.

Good luck but get information it might just be a very short lived side effect hopefully.

Sending you big hugs and love. SheilaFxxx

delia2 profile image
delia2

Hi. I’m on Olaparib and haven’t had this side effect but I do get days of nausea after I long ago was done with it. My oncologist has given me two week breaks every six months which has helped a lot.

Lovedogs41 profile image
Lovedogs41

Could it be unrelated to the Niraparib? As in a separate condition?

organicinna profile image
organicinna in reply to Lovedogs41

Could be physiological though.....anxiety as well ....

Jacky5 profile image
Jacky5

HiI do remember another lady posting about hunger pains whilst taking parps.

I remember it was really bad and like you she adjusted the dose but that's all I can remember I'm afraid.

Hopefully she will see your post and reply but I'll fo a bit of searching to see if I can find the post.

Might an indigestion remedy help?

Liz x

rosebine profile image
rosebine in reply to Jacky5

I think that was me Jacky!

Jacky5 profile image
Jacky5 in reply to rosebine

🤦‍♀️ X

testarossa71 profile image
testarossa71

Hi Rosebine, I trust you're speaking with your consultant about this?

In any case, some suggestions that might be helpful, if you haven't tried them already.

Drink lots. Sometimes our brain mistakes thirst signals for hunger pangs. Drink little and often, and always have a small glass of water before you eat.

As you almost certainly know, high carb meals fill you up initially, but can leave you starving again a couple of hours later. Foods that are high in protein, fibre, (and fat, but you have to manage that if you don't want to gain) will keep you feeling fuller for much longer. Break your meals down into 6 small portions a day, and add in 3-4 snacks for in-between. Focusing on lean meats and fish, high fibre vegetables (for example think about washing but not peeling your veg if you can), and a little splash of cream or dollop of butter as a/in a sauce. Snack on things like a handful of nuts (almonds or hazelnuts with the skin on are great), a dollop of high protein yoghurt, or a babybel cheese. If you're worried about gaining, then spend some time working out a meal plan which counts the calories for you, but maybe just see if the little and often method works for you first?

If you have any kind of bowel issues/stoma, you'll need to check with your consultant to make sure it's not going to make things difficult for you, and though you should be fine, it's always best to check. Apologies if that comes across as prescriptive, not intended.

I really hope you get on top of this, it must be incredibly frustrating. Wishing you luck, testarossa71 x

bamboo89 profile image
bamboo89

You have posted previously about this, I can't remember if I said this before, but it sounds like you might be producing excess stomach acid as a side effect. Too much acid often results in feeling empty and. or nausea, even if you've eaten and if its really bad, indigestion discomfort and ultimately heartburn. I wonder if its worth trying a drug like fomatodine daily or one of the 'prazoles' such as omeprazole, although I find this latter group of drugs actually makes the problem worse, so I stick to fomatodine, which works in a different way. Maybe ask the oncologist, but it does seem niraparib is affecting your microbiome...

Miriam

thejoannabell profile image
thejoannabell

Like Bamboo, I wonder if it is actually hunger since eating doesn't seem to make it subside at all. Perhaps a different GI issue? Or something neurological in which your brain perceives hunger that isn't there? I hope you are able to get it resolved; weight loss is the only upside of this damn disease for me.

rosebine profile image
rosebine

I think I came to the conclusion its something ghrelin related, the pill interferes with it or something.

Tesla_7US profile image
Tesla_7US

I believe PARPs dismantle the ghrelin leptin cycle that signals satiety. I had an uncontrollable appetite whilst on Olaparib. NOTHING I ate could satisfy me. I was ALWAYS craving something, but had no idea what it was! I gained so much weight I became the heaviest I've ever been. The added weight was ruining my joints so I started consuming large amounts of watermelon in order to feel full. Watermelon has nutrients that help cancer patients, yet has almost zero calories! I ate watermelon, green, red, orange and yellow peppers all day. The weight fell off and I lost 20lbs in 6 weeks. I've been eating large amounts of fruits, nuts and vegetables and kept the weight off for over 3 years.

organicinna profile image
organicinna

Hi Rose/. No I had it completely different while on Niraparib. I started with 300 but had unpleasant side effects physical and emotional. When they agreed to slash it to 200, I immediately felt better. But both doses strangely supressed my appetite. I was still eating 3 times a day and snacking but with no please just for the sake of it )) Then after my non cancerous intestinal blockage they put me on no fiber diet and I started to eat lotts of bread

organicinna profile image
organicinna

Hi RoseNo with me it was the opposite - Niraparib suppressed my appetite! I was on 300 then 200 and both times I felt ok no sickly or nauseous, but no cravings/ I was still eating regularly just because I used to be foody lady/ But with Niraparib excitement of nice meal or fancy particular foods gone . They took me of Niraparib last month because I recurred after 6 month/ And without any medication before my new chemo next week my appetite is perfect at the momnt ))

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