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Enzalutamide treatment and sweet flavour

User
Posted 04 Dec 2019 at 15:11

Dear all,

My name is Luis. 

My dad, 85, has recently started treatment with Xtandi enzalutamide. 

The PSA has gone drastically down and the test results looked very well.

He keeps walking 3-4 miles per day and this helps him a lot, both physically and emotionally.

2 main side effects of Xtandi up to now are:

1) Strong muscular pain specially in the low back and legs during the night, so quality of sleep is not great.

2) All the food tastes sweet to him, and specially at the mornings he can't eat almost anything due to this sweet flavour all around.

I've read Xtandi can affect appetite, but I was not able to find information about this special sweet flavour.

So I wonder if anybody here has had similar experience with enzalutamide?

Thanks a lot for your support and I wish you all the best.

Luis

User
Posted 05 Dec 2019 at 14:11

Bump

User
Posted 11 Dec 2019 at 12:47

Dear Chris,

Hope you are doing well.

I'm not sure I got your full message.

Did you want to provide any feedback in regards my question?

Many thanks,

Luis

User
Posted 14 Dec 2019 at 06:24

Bump is to push the thread to the top of the Recent Conversations so that people see it again and respond, if there have been no responses. Since there are still no responses, if may be that no one else feels they can help with your question. This reply has of course bumped the thread again.

Just guessing here because I have no idea, but the Enza might have masked some of the other taste senses. Does he still have a good sense of smell (which is heavily involved in taste too)? What about trying some more spicy foods, maybe things that your father might have found too spicy in the past? This is a suggestion made to many older people who lose some of their sense of taste with age. Some more salt or using MSG (mono sodium glutamate) might help too - try testing that with some Parmezan cheese which contains both.

It's good that the Enza is working, and wishing your dad all the best.

User
Posted 14 Dec 2019 at 07:21

Luis

Can't help with your original query.     I will create a  new conversation an elaborate on bump.

Thanks Chris

 

User
Posted 14 Dec 2019 at 09:39

Good morning,

Andy, thanks a lot for the explanation, I'm new here so I now understand it, really appreciated giving visibility to this conversation.

What you suggest is very true, I was talking to my dad in regards the sense of smell, as it is so close to the sense of taste. Also something we have done is to change certain habits. For example now breakfast is not bread and milkmwith coffee but more japanesse style misho soup with different ingredients. As misho soup is i not sweet but saltier, it seems to be more enjoyable for him.

So experimenting and selecting the recipees that work is now the challenge.

Chris, thanks for your previous feedback and sharing your experience, always encouraging.

Thanks for all your support and have a lovely weekend,

Lluis

 

User
Posted 11 Feb 2021 at 13:15

Just happened across your post, looking for info about enzalutamide changing the sense of taste - my partner has been on it for about 8 months, and says he has a sweet taste in his mouth in the mornings. His likes and dislikes have changed - he's right off bread (tastes too sweet), and hasn't eaten biscuits for ages. Interesting to see he's not the only one affected, I hadn't realised it could be the drug.

User
Posted 11 Feb 2021 at 16:47
Enza can have similar side effects to chemotherapies such as docetaxel, cabazitaxel, carboplatin - including nausea, diarrhoea, sore skin, increased risk form infection, a metallic taste in the mouth and loss of taste.

According to the Journal of Oncology, loss of / change in taste affects about 5% of men on enza but for some, it can (allegedly) be improved by taking the tablets at night rather than in the morning.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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