I, too, had a bad taste in my mouth after SCT. Check your tongue for "white tongue" that can cause bad breath. My dentist said to gently use a tongue scraper for that and non alcohol mouthwash. My transplant center gave me Prilosec (omeprazole), as acid reflux could contribute to this problem. I recently bought Smart Mouth mouthwash, and that helps with bad taste.
As for food, I really didn't have a change in how food tastes or smells.
Forums
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brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Taste and loss of desire to eat
I have been on Revlimid and Velcade for about 3 months. My multiple myeloma returned after a stem cell transplant in May of 2015.
I too have lost my sense of taste and it's horrible. Only eat sweets as I can taste that at least a little and nothing is ever salty enough. Sadly, I don't lose weight because of mainly consuming sweets. Some foods have a vinegar taste, so I'd just rather not eat anything.
In 2015 I was on 16 weeks of Velcade and had no problem with taste, so obviously it is the Revlimid and if if that is going to be a forever maintenance drug, I'm not looking forward to it at all. It is very hard to cook for my husband when you can't taste, especially with the salt situation.
Just wanted to let you all know the Revlimid has ruined my taste buds as well.
I too have lost my sense of taste and it's horrible. Only eat sweets as I can taste that at least a little and nothing is ever salty enough. Sadly, I don't lose weight because of mainly consuming sweets. Some foods have a vinegar taste, so I'd just rather not eat anything.
In 2015 I was on 16 weeks of Velcade and had no problem with taste, so obviously it is the Revlimid and if if that is going to be a forever maintenance drug, I'm not looking forward to it at all. It is very hard to cook for my husband when you can't taste, especially with the salt situation.
Just wanted to let you all know the Revlimid has ruined my taste buds as well.
Re: Taste and loss of desire to eat
My first treatment back in 2014 was Revlimid, Velcade, and dexamethasone. I could only stand that for 3 months. I have been on various regimens since then and right now it is melphalan and dexamethasone.
Revlimid and melphalan both attack the fast growing cells throughout the entire digestive tract, starting with the mouth and going all the way to the other end. In the event of severe mouth sores, it seems "magic mouthwash" works well, especially if you have thrush, but the politicians and lawyers don't want us to have anything containing effective pain killers. My doctor cannot call in a prescription for it, I must pick up a hard copy and had deliver it to the pharmacy. That product has a shelf life of about a year so I just get a new script as needed when I am at the doctor's and keep a fresh bottle in the fridge. I find that a warm salt water rinse, gargle and spit works well most of the time, bit I like to have the big gun available if I need it..
Loss of taste is inevitable but for me it seems to come and go. The same food will taste different from one day to the next. For me, salt does not enhance the taste of foods, it only makes them salty.
I also experience peeling of the skin in my mouth from time to time. Some days it is so sore I cannot wear my dentures. I haven't eaten a snack chip or nut in years.
Grizlump (grouchy German)
Revlimid and melphalan both attack the fast growing cells throughout the entire digestive tract, starting with the mouth and going all the way to the other end. In the event of severe mouth sores, it seems "magic mouthwash" works well, especially if you have thrush, but the politicians and lawyers don't want us to have anything containing effective pain killers. My doctor cannot call in a prescription for it, I must pick up a hard copy and had deliver it to the pharmacy. That product has a shelf life of about a year so I just get a new script as needed when I am at the doctor's and keep a fresh bottle in the fridge. I find that a warm salt water rinse, gargle and spit works well most of the time, bit I like to have the big gun available if I need it..
Loss of taste is inevitable but for me it seems to come and go. The same food will taste different from one day to the next. For me, salt does not enhance the taste of foods, it only makes them salty.
I also experience peeling of the skin in my mouth from time to time. Some days it is so sore I cannot wear my dentures. I haven't eaten a snack chip or nut in years.
Grizlump (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Taste and loss of desire to eat
Grizlump,
Are you sure this statement you made is correct?
I suspect it's true for melphalan, given that it's a traditional (old-style) chemotherapy agent. But I don't think it's true for Revlimid, which is a newer, "targeted" cancer treatment. When Revlimid causes stomach issues, for example, I believe it's because it affects how much bile the body produces, or the way the bile is processed. It's not because it kills off stomach cells.
Melphalan is known to cause mucositis, the sores in the mouth that can occur during the high-dose melphalan stage of the transplant process. Revlimid, however, is not known to have that side effect regularly.
Are you sure this statement you made is correct?
Revlimid and melphalan both attack the fast growing cells throughout the entire digestive tract
I suspect it's true for melphalan, given that it's a traditional (old-style) chemotherapy agent. But I don't think it's true for Revlimid, which is a newer, "targeted" cancer treatment. When Revlimid causes stomach issues, for example, I believe it's because it affects how much bile the body produces, or the way the bile is processed. It's not because it kills off stomach cells.
Melphalan is known to cause mucositis, the sores in the mouth that can occur during the high-dose melphalan stage of the transplant process. Revlimid, however, is not known to have that side effect regularly.
Re: Taste and loss of desire to eat
In my case, I found that the loss of taste differed for different tastes. For example, saltiness was radically diminished, so that anything that had a lot of salt, such as breads, cakes, pretzels, cereal, etc., tasted like cardboard. But sweet was not affected. (My taste problem was compounded by something else I had to take for a while for osteonecrosis of the jaw, which was caused by Zometa. That was a mouthwash called chlorhexidine (Peridex), which is known to interfere with salt taste.)
So I would suggest you see if you could identify differences in the aspects of taste that are affected, and if that is the case, you might be able to find foods that remained reasonably good. Also, I have read that people with this condition might find that strong spices can punch up food and make it tasty again. (I found that putting raisins in cereal made a big difference in how palatable it was to eat the cereal, because sweet was not affected in me as much as salt taste. I know raisins are not spices, but the principle is the same.)
I am currently on maintenance doses of dexamethasone (10 mg) and Revlimid (10 mg), and my taste has been gradually normalizing over the months.
I hope these suggestions will be helpful. Good luck!
So I would suggest you see if you could identify differences in the aspects of taste that are affected, and if that is the case, you might be able to find foods that remained reasonably good. Also, I have read that people with this condition might find that strong spices can punch up food and make it tasty again. (I found that putting raisins in cereal made a big difference in how palatable it was to eat the cereal, because sweet was not affected in me as much as salt taste. I know raisins are not spices, but the principle is the same.)
I am currently on maintenance doses of dexamethasone (10 mg) and Revlimid (10 mg), and my taste has been gradually normalizing over the months.
I hope these suggestions will be helpful. Good luck!
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
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