Taste

[Lellycat1]

Hi all,

This site is a godsend, even though I am in early stage CLL.

I am as a person naturally inclined to want to know about the struggles and prefer to be prepared in some way for what might be in the future. Everyone here shares the bad days along with the good, are always ready to offer support and buckets loads of optimism, I very much appreciate this. 😍

So today’s question is around taste.

Over the last few months I have been experiencing loss of taste, on occasions food tastes strange . I had a cold virus three weeks ago which I am over but my loss of taste seems to have progressed further.

This week I have had a strange taste of what I can only explain as burnt rubber... maybe a little like the medicine on the spoon that accompanied either the smallpox or polio injection given to me as a child - I can’t remember which one. Food tastes really tangy and I do not enjoy eating like I used to...

I would like to ask if anybody experienced this as part of Cll ?

Thanks again for being here... ❤️

[cllady01 Former Volunteer]

Lellycat1, you might explore the possibility of the medication you took for the cold virus as a source of your taste disruption. Also, if there is any infection lingering in the sinuses or or nasal passages, that might be a cause.

I have read that some medicines can cause the taste problems some time after you have stopped them.

healthline.com/health/taste...

I hope this helps in your exploration. It is important to be able taste on several levels—if we can't taste or all tastes bad, we may not eat enough; if the food happens to have turned bad, we won't be able to discern that and it can make us ill; if the lack of taste is a loss of our ability to smell, we won't be able to smell the food turned bad nor the scent of gas or other fumes that can be harmful.

I would get an appt. with my Dr. if this continues.

[Lellycat1 in reply to cllady01]

Thank you... just paracetamol taken for virus, you may have a good point though for future reference.

I take antihistamine every day for urticaria- could be something to do with that ..I shall do some some research. 😃

[Carajito]

My CLL caused my lingual tonsils to grow after my regular tonsils were removed last year. And last month they removed these lingual tonsils with a robotic surgery (TORS).

Ever since that surgery I lost a great deal of my taste. Especially flavors like coffee and chocolate taste like nothing. I hate it, because coffee really was my thing.

But for me it's most likely caused by the surgery and for that only indirect related to the CLL. I have hope that it will come back.

Did you get any treatment? Medication sometimes affect taste as well.

I really hope for you it will come back. It sucks not be able to enjoy food.

Carajito (Netherlands)

[Lellycat1 in reply to Carajito]

I have a problem with coffee in particular ...and curiously I have been blaming a well known chocolate company for possibly changing their recipe..lol😂 How weird !!!

Still have my tonsils for now though.

Fascinating...thank you 😊