Polyphagia: This is permanent hunger, been... - My Ovacome

My Ovacome

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Polyphagia

rosebine profile image

This is permanent hunger, been suffering from this since being on Niraparib but didnt know what it was called ! Been on Niraparib 3 months now, though had a 2 week break, when symptoms went away. Consultant is a bit flummoxed and couldnt advise how to alleviate. I guess Im going to have to come off the drug as Im really struggling every day with this. Wonder if alternative Parp will be different!

Anyone else had this or have you the opposite problem ?

32 Replies

Hi. Maybe try Olaparib? I’ve had more the opposite problem, losing my appetite and things tasting off. Now I’m more normal since my dose was reduced to half the full dose. For months I barely ate dinner. My appetite was good in the morning and then decreased as the day went on. I hope you can try a different PARP because it would be a shame not to be able to take one. I don’t know much about rucaparib. Sending positive thoughts and hugs.

Rankij11 profile image
Rankij11 in reply to delia2

So weird that’s how Olaparib works for me Jennifer

organicinna profile image
organicinna in reply to delia2

Hi Delia. Its opposite with me on Niraparib - no appetite all day till from 7pm )) I still eat in the morning just for the sake of it and for energy ))

Had this actually caused you to put on weight?

Jenny

Hi. I’ve been on this since Christmas. I do get hungry and tend to eat smaller meals but more often now so I’m not ravenous at mealtimes. I drink green tea with ginger which I find helpful and carry a cereal bar when I’m out so I can break a piece off for a top up 😁. I feel nauseous if I don’t eat regularly but I’m trying to eat more fruit as a snack and reduce portion sizes. It seems to be working and I’ve held my weight for the last few months. Thought it was just me that could eat a horse as most people seem to go off their food but I’m obviously not. Hope you can find a solution. Take care. Chris

Ive just eaten a beefburger and a huge pile of chips and I could eat it all over again! usually have big meal in the evening but thought Id see if eating lunchtime made a difference.Dont get that full feeling at all. Tried drinking lots of gassy drinks and no change.

Im trying not to overeat as it wouldnt make a difference except for my weight !

Might ask about Olaparib but Im BRCA negative so probably a no.

I have been a small boned, energetic, slender person all my life. I noticed strange hunger cravings and lack of appetite swings whilst taking Olaparib for 19 months. At first I could never be satisfied by ANY food. I kept eating trying to find a food that would sate my appetite. NO FOOD could satisfy my hunger. Yet I could not stop eating. I started gaining weight while eating more yet beginning to hate food! I began researching ghrelin and leptin which are hormones that regulate energy and hunger. I've read hundreds of pages on this topic. I'm convinced that Olaparib disturbed the ghrelin / leptin balance of my body. Here's some info from PubMed: pubmed.ncbi.nlm.nih.gov/172...

rosebine profile image
rosebine in reply to Tesla_7US

Yes, I think you are right, but is there anything we can do about it ! Its similar to Prada Willi syndrome I feel.(prob not right spelling )

Tesla_7US profile image
Tesla_7US in reply to rosebine

The Olaparib irritated my stomach so I had to have food in it at all times otherwise I'd be nauseated. So I started eating about three tablespoons of any whole food every 45 minutes. I stopped eating anything with added sugar for about 5 days and focused on fruits, nuts, vegetables and protein in small amounts. My stomach shrunk as I got used to smaller meals and I lost the 20 lbs I'd gained plus another 9-10 lbs and I feel great.

Wow so interesting....Am only 3 weeks on Niraparib. No appetite all day till evening and and not feeling hunger at all. Noticed only that i cant now stand sugary things , deserts and milk products but craving savory and pickles......bread yes still fancy nice bread but not too much. But on chemo i was craving sugar and all carbs. Lost 2 st after the operation but gain a stone on chemo....

Hi rosebine

I am not at your stage with treatment. I still have 1 chemotherapy left to go. I am hungry on chemotherapy but now there’s certain things I can’t eat like readybrek, weetabix as these now make throw up 🤢. Like this morning had readybrek then was sick couple of hours later. Love and hugs to you all. Sheenagh x

I'm reading your post thinking that's an unusual side effect and the more I read the more I start to think...actually I very rarely get full now and I'm constantly having to watch what I eat.Not to the degree that you describe.

I'm taking Olaparib. I try to have lots of veg with a meal and eat that first before I start on the carbs. That often helps.

Maybe like you this is a side effect of the parp or maybe I'm just greedy? I don't know.

I really hope you find something that helps, it would be such a shame to have to give up the niraparib.

All the very best.

Liz xx

organicinna profile image
organicinna in reply to Jacky5

I started to think that its phycological when people to eat more on Parps. Its like to distract one selves and to feel alive and in control?

Jacky5 profile image
Jacky5 in reply to organicinna

Could be.Think for me it's probably a combination of factors.Be intersting to see how I feel once I've finished olaparib.

L x

I didn't notice this side effect when in Niraparib - if anything, my appetite was reduced. I do wonder though - do you feel slightly sicky or nauseous if you don't eat? Are you on an acid control tablet such as omeprazole? Because I did notice I needed my ranitidine (acid control tablet) more often when on niraparib, and sometimes I'd get that sicky/hungry feeling and have to eat something or take a bit more ranitidine - niraparib seemed to disturb the acid balance in my stomach, so could it be that, and that's why you're never full and eating more?

Miriam

rosebine profile image
rosebine in reply to bamboo89

I am on omeprazole , it doesnt help ! Got on the scales this morning and weight is up again !

bamboo89 profile image
bamboo89 in reply to rosebine

Oh dear; see my lower comment about omeprazole in case its relevant, but it might not be to your circumstances..

Miriam

I feel nauseous and have to eat something to stop it. I put sugar in my tea now and my saviour when out is a shortbread finger. Eat small meals dont fancy much because of the sicky taste in my mouth but now got a spare tire round my middle but not put on weight. Got to find something that stops the Niraparib hunger with no sugar. I take emsaprozole for my stomach.

On the subject of omeprazole or the other 'prazole' drugs to control stomach acid, I just want to say I found it useless, in fact, I got that 'hungry nausea' and heartburn within half an hour of taking it. Which is why I stuck to Ranitidine (which has been withdrawn) and now Fomatadine instead - these work on a different aspect of acid production in the stomach and I do wonder how many other people have a similar issue with the 'prazole' drugs... I know one other person who had the same experience as me on these drugs, and who also has had to take cimetidine or famotadine instead... Just a thought,

Perhaps your body is craving something specific and demanding you to eat in an attempt to find it. Are you on multivitamins and minerals? Or might you be comfort eating? This is an awful disease and seeking comfort through food is understandable. I have been on it since March and have a very good appetite, but I always had. Notice I am a bit more anxious and I always crave food when I am worrying. I especially cannot settle in front of the tv in the evening and that is when I want to eat and eat. Hope you find a solution. Love and prayers x

Reading you thinking am exactly like that..... )))

lol. Maybe I am just greedy. Ha ha x

Cumbrian Lass, no its not comfort eating, its a physical symptom, real hunger pains and growling tum, Im resisting them until lunchtime, which wont really change the situation!

Oh dear. That sounds awful. Could your GP or Macmillan nurse help? My M nurse has been incredibly helpful and useful at getting my stomach and intestines started again after they gave up working, which was terribly painful. My onc did not want to know. Hope you find some solution as what you are going through sounds awful. Best wishes and hugs x

I am on niraparib, and I have the opposite effect. Less appetite and changes in my taste so that nothing tastes quite right. I know some patients are prescribed a small dose of an amphetamine for fatigue, and that suppresses your appetite. If you are also experiencing fatigue that might be worth checking into?

Wow amphetamine? How thus poor people sleep on that ? I think even small doses will disturbe sleep....

It’s usually a very small dose of ritalin to be taken in the morning. I don’t think it stays in your system long enough to disrupt sleep if taken in the morning.

Aaah OK. They wont prescribe this drug in the UK for fatigue though....

Well Ive decided to halve my dose of Niraparib after side effects getting unbearable. Havent been able to contact the Consultant or CNS cos its the weekend, init ! I expect I will be told off. Ive given it 3 months for the side effects to subside so think Ive given it a fair chance.

OvacomeSupport profile image
OvacomeSupportPartner in reply to rosebine

Hi there rosebine

Really sorry to hear that you’ve experienced such overwhelming hunger since being on niraparib. I can see you’ve had lots of informative replies from the forum community, but I’m just wondering whether you’ve been able to speak with your CNS or oncologist yet? I understand it can be very difficult to get in touch with the clinical team over the weekend. It’s really important that you’re able to discuss the dosage of niraparib with them, perhaps the chemotherapy day unit or your GP may be able to assist?

Please don’t hesitate to get in touch if you would like to talk through this with a member of our support team. You can chat with us directly via this forum or call us on 0800 008 7054, we’re here Monday – Friday, 10am – 5pm and are happy to talk through anything that may be on your mind.

Best wishes

Annie

Ovacome support

Thanks Annie, Ive managed to speak to someone today and got a phone consult with Oncologist this week.

Relief, going down to 100mg Niraparib seems to have done the trick! Appetite more or less back to normal and been feeling so much better I wallpapered the chimney breast yesterday. Mind you that has brought its own problems in that Im aching and stiff due to all the bending stretching and nipping up and down stepladders !

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