I have a problem that is driving me crazy. I have multiple myeloma, and am on dex, 40 mg every Friday. I am also on ranitidine [Zantac] for acid reflux, and enalapril [Vasotec] for high blood pressure. I have profuse sweating all the time, people look at me like I'm nuts, its running down my face no matter what the temperature is.
The worse problem -- and I'm wondering if anyone else has this and has a solution for it -- is the bad body odor associated with it. The main problem is at night, I wake up completely soaked from head to toe, clothes have to be changed and sheets too. But I have this horrible smell all over me and it is not like regular body odor, I can't even explain the smell as I have never smelled this before.
No matter how much I shower that smell is still there. I hate it as I am afraid that someone at work will think I don't kept myself clean.
Is the meds causing this, or the cancer itself? I need help on how to get rid of this odor on my body. It all I smell all the time.
Thanks, Nancy
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9 posts
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Sweating & body odor
Hi Nancy ... I am sorry to hear that you have those awful night sweats. I see from your profile that you might also be at the age for menopause. I went through that at your age, and had a lot of hot flashes, for a couple of years. But I would think that it might still be considered to be an oncology issue, since you are taking those sorts of meds.
Hopefully you have an exaggerated sense of smell, like some do on the meds, and the sweat is not as noticeable as you think it is to others.
Hopefully you have an exaggerated sense of smell, like some do on the meds, and the sweat is not as noticeable as you think it is to others.
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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: Sweating & body odor
Nancy,
I went through menopause at 38, had to have a total hysterctomy. So I know its not that. I had the sweats and things with that, but never had any night sweats again until I was diagnosed in 2007 with multiple myeloma and started the dex. But never had this odor until about 6-8 months ago and it is getting worse as time goes on.
Going to ask my doctor about it when I see him in Feb. But it just drives me nuts smelling this all the time. Thanks
I went through menopause at 38, had to have a total hysterctomy. So I know its not that. I had the sweats and things with that, but never had any night sweats again until I was diagnosed in 2007 with multiple myeloma and started the dex. But never had this odor until about 6-8 months ago and it is getting worse as time goes on.
Going to ask my doctor about it when I see him in Feb. But it just drives me nuts smelling this all the time. Thanks
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Sweating & body odor
Hi again Nancy ... after I went through my ASCT, my sense of smell was so out of the normal, that I smelt the lemon scented dishwashing soap and it seemed very strange. I kept insisting that there was rot in the drains and I should call a plumber! Other scents were also exaggerated. It lasted for a few weeks or months, but eventually subsided.
Hope you can get some relief from all of this after consulting with your doctor too. Maybe he/she will refer you to another specialist also.
Hope you can get some relief from all of this after consulting with your doctor too. Maybe he/she will refer you to another specialist also.
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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: Sweating & Body Odor
Ever since i was diagnosed I get frequent night sweats and I smell much quicker than I should after a shower. So you are not alone.
-Chris
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Sweating & body odor
I am on dex and pomalidomide [Pomalyst, Imnovid] after 9-10 months last year on dex & Velcade. I started my current regime in mid December last year and the body odour has become progressively worse. I often wake up sweaty but not on a daily basis, but when I do this odour is strongest.
I take 40mg of dex every Friday and then Saturday is a very lethargic day and the odour is strongest. Today it is horrible. I don't recall noticing it when I was on Velcade so maybe it is the pomalidomide? Today it is not associated with sweating. But what I do have a problem with is that when I shower I sweat and cannot get dry properly. Once I start to get dressed perspiration is running down my face and body.
I so hate this and feel terribly unclean to the point where I am considering that this is a quality of life issue and am considering stopping treatment. I know this is a radical step and am giving it a lot of thought, it is a decision I will not take lightly as I know the consequences will be dire. I am not in remission yet. I was diagnosed 18 years ago and initially got 8 years remission. But once I relapsed the longest remission I have had has been 2 years.
I am fighting my 4th relapse and it is proving to be a long and trying road. I am now 65 years old and can look forward to being on this regimen for the rest of my life it works for me. My kappa light chains at last reading had risen from 11 to 14 after going down from over 200. So it looks as if they are on the move upwards again.
I know this odour is not menopause - been there and done that with all the attendant night sweats and hot flushes. This is quite different.
Many of you seem to have this problem and I sincerely hope someone has an answer.
I take 40mg of dex every Friday and then Saturday is a very lethargic day and the odour is strongest. Today it is horrible. I don't recall noticing it when I was on Velcade so maybe it is the pomalidomide? Today it is not associated with sweating. But what I do have a problem with is that when I shower I sweat and cannot get dry properly. Once I start to get dressed perspiration is running down my face and body.
I so hate this and feel terribly unclean to the point where I am considering that this is a quality of life issue and am considering stopping treatment. I know this is a radical step and am giving it a lot of thought, it is a decision I will not take lightly as I know the consequences will be dire. I am not in remission yet. I was diagnosed 18 years ago and initially got 8 years remission. But once I relapsed the longest remission I have had has been 2 years.
I am fighting my 4th relapse and it is proving to be a long and trying road. I am now 65 years old and can look forward to being on this regimen for the rest of my life it works for me. My kappa light chains at last reading had risen from 11 to 14 after going down from over 200. So it looks as if they are on the move upwards again.
I know this odour is not menopause - been there and done that with all the attendant night sweats and hot flushes. This is quite different.
Many of you seem to have this problem and I sincerely hope someone has an answer.
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SusanMary - Name: Susan Brown
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 1996
- Age at diagnosis: 47
Re: Sweating & body odor
Hi Nancy 524,
It has been a long time since I was on dex (40 mg) but I can still remember the night sweats. The night sweats do decrease. This question does come up on the beacon from time to time. The following is from one of my previous posts on the same topic, for more comments go to;
https://myelomabeacon.org/forum/sweating-buckets-while-taking-revlimid-and-decadron-t1658.html
"I had those wringing wet night shirts, having to change my top at least twice a night (particularly on those dex nights) . I put the majority of it down to the dex (some of it my changed eating habits) and a little due to a change in my hormones (chemo intiated menopause). "
and
The following is from eHealthMe
Could Dexamethasone cause Night sweats? A study of 171 users
This is a real world study of Night sweats among people who take Dexamethasone. It is created by eHealthMe based on 171 reports from FDA. In total 50,257 Dexamethasone users are studied.
Dexamethasone
Dexamethasone has active ingredients of dexamethasone. It is used in swelling, multiple myeloma, inflammation, congenital adrenal hyperplasia, metastatic brain tumor. Commonly reported side effects of Dexamethasone include fever, pneumonia, agranulocytosis, nausea, weakness.
Night sweats
On Jan, 23, 2013: 50,257 people reported to have side effects when taking Dexamethasone. Among them, 171 people (0.34%) have Night Sweats.
Time on Dexamethasone when people have Night sweats * :
< 1 month 1 - 6 months 6 - 12 months 1 - 2 years 2 - 5 years 5 - 10 years 10+ years
Night sweats 83.33% 8.33% 8.33% 0.00% 0.00% 0.00% 0.00%
Gender of people who have Night sweats when taking Dexamethasone * :
Female Male
Night sweats 72.32% 27.68%
Age of people who have Night sweats when taking Dexamethasone * :
0-1 2-9 10-19 20-29 30-39 40-49 50-59 60+
Night sweats 0.00% 3.68% 0.00% 0.00% 4.91% 30.67% 30.67% 30.06%
Top conditions involved for these people * : 1. Multiple myeloma (29%)
I had a look at other forums where dex is used for treatment and it appears that there is a small percentage of people (mainly females) who have the night sweats when on dex.
It has been a long time since I was on dex (40 mg) but I can still remember the night sweats. The night sweats do decrease. This question does come up on the beacon from time to time. The following is from one of my previous posts on the same topic, for more comments go to;
https://myelomabeacon.org/forum/sweating-buckets-while-taking-revlimid-and-decadron-t1658.html
"I had those wringing wet night shirts, having to change my top at least twice a night (particularly on those dex nights) . I put the majority of it down to the dex (some of it my changed eating habits) and a little due to a change in my hormones (chemo intiated menopause). "
and
The following is from eHealthMe
Could Dexamethasone cause Night sweats? A study of 171 users
This is a real world study of Night sweats among people who take Dexamethasone. It is created by eHealthMe based on 171 reports from FDA. In total 50,257 Dexamethasone users are studied.
Dexamethasone
Dexamethasone has active ingredients of dexamethasone. It is used in swelling, multiple myeloma, inflammation, congenital adrenal hyperplasia, metastatic brain tumor. Commonly reported side effects of Dexamethasone include fever, pneumonia, agranulocytosis, nausea, weakness.
Night sweats
On Jan, 23, 2013: 50,257 people reported to have side effects when taking Dexamethasone. Among them, 171 people (0.34%) have Night Sweats.
Time on Dexamethasone when people have Night sweats * :
< 1 month 1 - 6 months 6 - 12 months 1 - 2 years 2 - 5 years 5 - 10 years 10+ years
Night sweats 83.33% 8.33% 8.33% 0.00% 0.00% 0.00% 0.00%
Gender of people who have Night sweats when taking Dexamethasone * :
Female Male
Night sweats 72.32% 27.68%
Age of people who have Night sweats when taking Dexamethasone * :
0-1 2-9 10-19 20-29 30-39 40-49 50-59 60+
Night sweats 0.00% 3.68% 0.00% 0.00% 4.91% 30.67% 30.67% 30.06%
Top conditions involved for these people * : 1. Multiple myeloma (29%)
I had a look at other forums where dex is used for treatment and it appears that there is a small percentage of people (mainly females) who have the night sweats when on dex.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Sweating & body odor
Hi, my Dan has the same problem, we think it is dex? He sweats so much I watch it come out of his skin, totally amazing, but really horrible for him. He now takes his dex in the morning, so he sweats all day, but not quite so much at night. He sleeps on 2 or 3 towels and I have spare pillows around for him to use, because he sweats all the way through 2 pillows and on the mattress. Dan's also on Pomalyst and cyclophosphamide.
The sweats were happening before myeloma diagnosis 2 year ago.
The sweats were happening before myeloma diagnosis 2 year ago.
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41
Re: Sweating & body odor
Hi Nancy,
I too have had severe night sweats as well as sweating no matter the temperature in the daytime. This has been an issue since my stem cell transplant in 2013. I know that sweats is a common reaction in those taking steroids but, I was off steroids for 3 years and still had the sweating. As for the odor, it seems like I can still smell the melphalan treatment I received as part of the transplant process. Not sure how or why I remember that smell.
I am taking a drug called glycopyrrolate (glycopyrronium) at night that has worked phenomenally well for the sweating. It is an off label use in this case, but is well worth it. I think they use this drug for stomach ulcers. Hopefully, your physician will read up on this med and if you get to try it, I hope it will work for you too!
I too have had severe night sweats as well as sweating no matter the temperature in the daytime. This has been an issue since my stem cell transplant in 2013. I know that sweats is a common reaction in those taking steroids but, I was off steroids for 3 years and still had the sweating. As for the odor, it seems like I can still smell the melphalan treatment I received as part of the transplant process. Not sure how or why I remember that smell.
I am taking a drug called glycopyrrolate (glycopyrronium) at night that has worked phenomenally well for the sweating. It is an off label use in this case, but is well worth it. I think they use this drug for stomach ulcers. Hopefully, your physician will read up on this med and if you get to try it, I hope it will work for you too!
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Rita Thrash
9 posts
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