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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Constant nausea

My 18 year old daughter is 56 days post transplant. She’s been doing really well; her blood results are all great - but in the last week she’s started to feel nauseous all the time & eating has become very hard. She’s suffered from nausea/vomiting throughout treatment (flag-Ida chemo was particularly bad) & has already lost a lot of weight - she’s so skinny now it really scares me when she can’t eat more than a few mouthfuls during the day. She’s on just about every anti-emetic going (ondansetron, hyacine patch. Levapromazine). It could be the meds making her sick or it could be Gvhd. Just wanted to hear from others who’ve gone through this - how long did it last, & any tips? Thanks.

Comments

  • Hi there and welcome to the forum. I'm a transplant patient too, though over 7 years ago, and am a community champion on the forum.

    Nausea and weight loss is normal post transplant and I guess for most of us seems to last a painfully long time. I remember that I was still struggling to eat properly and keep things down for quite some time after my transplant and for some time after the stage that your daughter is at, which is still quite short after transplant.

    I lost a lot of weight and it took months to put it back on and get my strength back. For me it was a case of eating little and often, with whatever I could tolerate for any period of time. This was generally nutritional soups and milk shakes which I survived on for quite some time. It was made more difficult by the effect that the chemotherapy had on my taste, so there was very little that tasted appetizing

    I know how distressing it will be for you all, but I'm sure your daughters medical team are monitoring the situation. If it is indeed GvHD that is affecting her they will know what other signs to look out for. They may also be able to call on the support of a dietitian who may have ideas and suggestions of appropriate foods that will give her the nourishment she needs. In my case I was actually prescribed some of the high nourishment shakes and soups. She may be able to tolerate small regular amounts of food, continuously through the day rather than trying to eat larger meals at mealtimes. I would also say that she needs to keep her fluids intake up.

    My suggestion would be to try different things and see what she is able to eat, even if it's something she might not normally like, as changes in taste might make things she didn't like before more preferable. Try things that are easy to swallow, so fluid type meals may help rather than anything particularly solid. I know the current situation wont help with supplies in shops generally low anyway. Fruit and fresh vegetables might help?

    Things will return to normal in time so it's important to hang in there and keep plugging away, focused on the end goal of getting better and fully recovered. From being grossly underweight after my treatment I now find myself in the situation of being overweight and trying to diet so it just takes time unfortunately.

    I hope this helps a little and I'm sure others will have suggestions as to what helped them. I wish you and your daughter well and hope you'll keep us updated with her progress.

    All the best,

    Steve

  • Thank you - really helpful to her from someone who's been through it. I'd love to think that Ruby might one day be overweight!
    All the best,
    Emma

  • Hi Emma

    We are going through exactly the same thing with our son he is 25 and 61 days post transplant. Until about 7 days ago he was doing really well, good appetite, energy. However now he has terrible fatigue/nausea/sick in morning and appetite terrible. Got to nag him.to drink.his 2 litres. It's wearing us out!

    Hayley

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