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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
August 10, 2025
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A MyMyelomaTeam Member

I had the same problem with food, my taste buds finally came back after about two years, it’s the steroids that affected my taste buds. Told my doctor I didn’t like them, my weight loss was down to 170 lbs, the doctor ordered a pill that helped me put on weight back to 190lbs. After five years I finally that I am in remission for two months so far. Feeling wonderful now, no problems!

August 12, 2025
A MyMyelomaTeam Member

Victor;I am not on treatment, haven't been for almost 4 yrs. Experience has taught me that oncology is separate from other issues. Even if it may be a side effect of MM/treatment. My primary deals with and refers me to whatever dept. His thinks can help. Lately I'm waiting for an MRI of my head/brain.Radiology..or insurance has not
approved of an MRI yet. I did have a CT Scan and he thinks I should further it with the MRI. I hope it isn't turned down. The specialist would mean better insurance coverage. I am not complaining.It is what it is

August 12, 2025 (edited)
A MyMyelomaTeam Member

Are you still on active treatment? One of the agents you are on may be causing this.
The other thing I cautiously suggest is testing for Covid as it is still around and also causes loss of taste and smell even if you don’t think you are experiencing other symptoms.

I would highly suggest that you get a Myeloma Specialist, especially if you are not getting the results you feel you should from your current doctor.
Unfortunately if you are seeing an oncologist, many only concentrate on killing the cancer and are not concerned with side effects or other issues that may arise.

August 11, 2025
A MyMyelomaTeam Member

I hope your taste returns. Mine did but it has changed, in such that somethings are not so appealing as they used to be; like dark chocolate.

August 10, 2025
MyMyelomaTeam

Loss of taste is a known side effect that can occur with myeloma treatments. Many MyMyelomaTeam members report experiencing changes in taste, including a metallic taste in their mouth that some refer to as "metal mouth." This can happen even during maintenance therapy while the myeloma is under control. Since your doctor Show Full Answer

Loss of taste is a known side effect that can occur with myeloma treatments. Many MyMyelomaTeam members report experiencing changes in taste, including a metallic taste in their mouth that some refer to as "metal mouth." This can happen even during maintenance therapy while the myeloma is under control. Since your doctor hasn't been helpful, consider these steps:
• Ask for a referral to a specialist who can evaluate your taste/smell issues
• Request blood work to ensure everything is being properly monitored
• Discuss if any medication adjustments might help
• Ask about potential new treatment options on the horizon

Remember to be proactive in your care and don't hesitate to ask questions about any changes in your symptoms or treatment plan.

August 10, 2025

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