Low platelets and no taste - Venetoclax- Day 45

Mum has been out of hospital for a week and a half!! :) :) the minute she got out she felt a bit better, though incredibly weak and still needing a wheelchair. But oh so happy!! :) it makes such a difference not being there anymore and not having a hospital mattress to sleep on. Although we are still not home yet (we have had to relocate from the country for her treatment) it was a much needed change to improve her health, both physically and mentally.

She's lost a lot of weight due to a loss of taste - has anyone else had this side effect with the drug? She can taste strong flavours but most food has a bitter after taste... we are trying an array of food but it's tough finding anything that she likes and doesn't feel nauseated eating.

The other side effect is getting her platelets back up again. Transfusions 3 x a week are helping, and they are slowly creeping back up again. Haemoglobin is stable though! Until her platelets have improved we will stay in the city, and the Dr is keeping her on 200mg for now. The CLL appears to be under control and lymph nodes have shrunk.

All in all, much improvement... we just need to get some food into her!!!

3 Replies

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  • Hello Natali, I hope your Mum continues to recover. I am currently undergoing treatment with FCR and the nausea is dreadful. The treatment does seem to affect my taste and also sometimes I have a metallic taste in my mouth. But I find ginger very helpful. I even put it in my porridge one day and was able to eat it even though feeling nauseous. Also strong curries seemed possible to eat. Odd really. My appetite is certainly reduced during these times though so I am not surprised about your Mum's weight loss, especially if the hospital food she had is as bad as at my local hospital! All the best, Holly.

  • Hi Holly,

    Yes hospital food leaves a lot to be desired ;) we bring food in for her when she goes in, and good coffee!

    Will try the ginger, that's a good idea. She's been sipping ginger ale today and seems to enjoy that. Funny you should mention the curry, it does seem to be stronger flavours that still taste the way they should. Mustard was one she tried the other day and it still tasted 'normal'.

    When mum had FCR many years ago it helped to nibble on small amounts more frequently, rather than larger meals as she felt overwhelmed. Maybe try that?

    Mum just mentioned that she used to find that the air smelt like burning/fire. It went away after a while but she used to think something was burning in the house!

    Hoping you feel better soon x

  • Thanks for the tip about small more frequent meals than trying normal size meals. I will try that next week when it all starts again for the 5th cycle! I have not noticed differences in being able to smell anything just the taste issues. Hope your Mum is feeling better. Holly

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