I see a lot of us patients lose the ability to taste and a loss of appetite under Revlimid / dex, but I don't see many solutions to this problem. It can sure ruin Thanksgiving dinner but is good way to control weight.
Does anyone have a solution other than discontinuing treatment to regain the taste and a desire to eat?
Forums
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blustein - Name: Richard Blustein
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Taste and loss of desire to eat
Hi,
I have been in a clinical trial for newly diagnosed using carfilzomib (Kyprolis) / Revlimid / dex since early May. I take the maximum Revlimid dose of 25 mg. At first, I did notice that food tasted differently and sometimes like cardboard. This lasted a couple months and now things taste like they used too ... thank God ... because I never lost my appetite and I love to eat good food and cook (weekend warrior grillmeister!).
Tough it out. Things will get better! Terry L.
I have been in a clinical trial for newly diagnosed using carfilzomib (Kyprolis) / Revlimid / dex since early May. I take the maximum Revlimid dose of 25 mg. At first, I did notice that food tasted differently and sometimes like cardboard. This lasted a couple months and now things taste like they used too ... thank God ... because I never lost my appetite and I love to eat good food and cook (weekend warrior grillmeister!).
Tough it out. Things will get better! Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Taste and loss of desire to eat
For me, the loss of taste and lack of appetite was not permanent. Maybe the whole experience helped me to get healthier eating habits too, since I don't like to eat really heavy meat dishes or extremely calorific foods either anymore. Ginger is a good anti-nauseant, and fresh fruits and vegetables help too. So hang in there ... lots of people voluntarily control their eating habits anyhow as we get older.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Taste and loss of desire to eat
I had also lost my taste and appetite. I've lost 30 lbs (14 kg), which was a good thing.
For me, taste came back after a bit, but I still have less of an appetite than I did after I had a stem cell transplant (SCT). I'm on Revlimid now as a maintenance chemo. I eat less now, but better foods, and I'm keeping my weight down.
For me, taste came back after a bit, but I still have less of an appetite than I did after I had a stem cell transplant (SCT). I'm on Revlimid now as a maintenance chemo. I eat less now, but better foods, and I'm keeping my weight down.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Taste and loss of desire to eat
Thanks for the replies. I have had this before and did regain my taste – as well as the 50 lbs (23 kg) I lost. I am preparing for an SCT in February, so I am looking at a prolonged problem.
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blustein - Name: Richard Blustein
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Taste and loss of desire to eat
Hi Bluestein,
Since you can anticipate a problem with nutrition, maybe now would be a good time to get in touch with a nutritionist. They may have this service at your cancer centre! Then you could avoid the roller coaster ride of weight loss/gain.
Best wishes to you for your ongoing treatments!
Since you can anticipate a problem with nutrition, maybe now would be a good time to get in touch with a nutritionist. They may have this service at your cancer centre! Then you could avoid the roller coaster ride of weight loss/gain.
Best wishes to you for your ongoing treatments!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: taste and loss of desire to eat
I also have experienced a loss of taste first when I was on Velcade for more than a year and lost about 30 pounds (14 kg). Food tastes like cardboard, and I seem to like sweets and salty food; this feeling comes and goes.
I am now on Revlimid and the problem has not gone away. I have to force myself to eat, otherwise I feel weak from not eating.
Does anybody know a way to treat this?
I am now on Revlimid and the problem has not gone away. I have to force myself to eat, otherwise I feel weak from not eating.
Does anybody know a way to treat this?
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Peter Dieguez
Re: Taste and loss of desire to eat
I was lucky enough not to get a loss of appetite. I did have a friend who had it ... she dealt with it by inhaling cannabis through a vaporizer (more of a smoking dope kind-of-thing than medical cannabis oil). It worked a treat for her ...
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Mijji - When were you/they diagnosed?: 2011
Re: Taste and loss of desire to eat
I have been on Revlimid / dex - 3 weeks on and one week off for 6 months. I have posted before about a 'salty taste' from the Revlimid. At times it is fairly intense. Increased my desire for sweets at time. When I am off for the week, it seems to be a bit better. I don't know of any solution. I definitely have lost some weight. My appetite is good, but once the food is in my mouth, I have little desire to eat more.
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fetalsono - Age at diagnosis: 66
Re: Taste and loss of desire to eat
I still have a very bad taste (I describe it more like cotton-mouth) after being off all medications for seven months. I was on Revlimid for two years, and I thought that was causing it; but it remains a constant annoyance. I suck on ACT Dry Mouth lozenges (xylitol), which help somewhat.
Coach Hoke
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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