Burning tongue and metallic taste .

[GIDI]

I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and everything tastes metallic,but the worse is a burning tongue sensation. Does it have any connetion to CLL or Venetoclax ?Gidi

[AnneHill]

Hi, have you had your vitamin b12 checked? I had a sore tongue caused by low b12.If you lock your post you will get more replies, Anne uk

[GIDI in reply to AnneHill]

I am getting B12 shots one a month for a year now. My B12 is OK.

[Spark_Plug]

I would venture a wild guess based upon nothing substantial, that it has to do with the medication. All sorts of medicines can affect our sense of taste/smell.

[bonbeat]

I had a similar symptom from the allopurinol. I'm not sure if you are taking that? Once I stopped the allopurinol it resolved. Good luck

[GIDI in reply to bonbeat]

Thank you bonbeat, I was on allopurinol 18 months ago without any side reactions.

I will make an appointment with my oncologist to check if it is the Venetoclax.

[bonbeat]

I also had a similar symptom several years ago when I was going through a particularly stressful period on the job. It''s called "burning mouth syndrome." In that case it was brought on by stress. I found Biotene oral rinse and Lozenges to be helpful. However I am on Venetoclax and I have had so many odd side effects from that medicine that it is bound to be the culprit.

[GIDI in reply to bonbeat]

Stress makes sense. I will try Biotene.

Thank you for your advise.

[Sleep85]

Hi GIDI! I am currently on Gazyva and Ventoclax (starting 4th cycle of treatment), and have had many taste and smell issues. I can’t stand the smell of raw veggies and unfortunately many other thing since I started treatment.

I have experienced the burning sensation (not too intense though) since I’ve been on ventoclax, but it’s not all the time only occasionally, and it tends to be my whole mouth. I have found there are certain foods that make it worse, i.e. chocolate, spicy stuff, citrus, salty stuff. The Ventoclax has caused a lot of sinus issues and I have attributed some of the mouth issues to that. I take Quercetin 2-3 times a week and that helps some.

The nonstop nausea is still the hardest thing for me.

I hope you can find some relief soon.

[GIDI in reply to Sleep85]

Thank you sleep85, I hope so too