My husband was recently diagnosed with multiple myeloma and amyloidosis, and started treatment with Velcade subQ weekly for 4 weeks of a 5 week cycle, melphalan po days 1-4 only, and 40 mg po of dex days 1-4, 9-12, and 17-20. My question has to do with the dex.
He is tolerating everything else OK, but we are at day 18 of his first cycle and he announced tonight that he is going to quit the dex!
His stomach is so sore for the past 2 days he can't stand it and is doubled over in pain, he can't sleep, and he is very short of breath. I offered to take him to our local hospital and he refused, saying "What are they going to do anyway?"
And yes I should explain he takes it with food and I am feeding him a bland diet. No coffee, nothing like that and he is taking Pariet (rabeprazole) too. I am so concerned that he will not get remission of his multiple myeloma unless he takes his dex as prescribed.
I should explain that he was referred to oncology when his kidney function suddenly plummeted to Grf 15 and stayed there. He also has heart damage from an MI with 2 stents last year. He is not a transplant candidate in consequence.
I know the high dose dex is to try to save his kidneys, but instead of quitting could he take a lower dose in some way, that he can tolerate better but would be just as effective?
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Moderator's note: This posting has been moved to a thread of its own after originally being posted in this thread: Dexamethasone - how much is too much?
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Re: Extreme dexamethasone side effects - may quit it
Hi OD2
I am so sorry your husband is having such problems with dex. I must say that of all the drugs I have been given in the last 2 years, dex is probably the one I most disliked.
So, I sympathize with him and I think you should definitely discuss what options he has with your doctor.
I am so sorry your husband is having such problems with dex. I must say that of all the drugs I have been given in the last 2 years, dex is probably the one I most disliked.
So, I sympathize with him and I think you should definitely discuss what options he has with your doctor.
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Anonymous
Re: Extreme dexamethasone side effects - may quit it
I took prednisone and did well with it. I don't know the criteria for giving it, but perhaps you should ask the doctor.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Extreme dexamethasone side effects - may quit it
I would try to get your husband to get over the “what are they going to do anyway” view about going to the hospital when he is having severe and unexpected problems as a myeloma patient. People often do play their own doctor and take OTC pain, cold remedies, allergy, and antacid etc medications without consulting a doctor. But this is myeloma and as a myeloma patient I would not recommend playing my own doctor with this disease and the medications prescribed to treat it.
I understand the frustration of taking time off work to get an appointment to find out that there is not much that can be done, but then there are the times it was really important I went in when I did or things may have gotten really bad if I had not.
I have had my own experiences with dexamethasone and have read many peoples experiences with dexamethasone on the Beacon. What you are describing and attributing to dexamethasone seems to be atypical. Shortness of sleep is very typical but not that kind of stomach pain.
There can be a lot of side effects from all the drugs myeloma patients take and from my own experience is not always clear what may be causing what. I had a period of really bad stomach pain to at one point in my treatment, but it was from opiate drugs, not dexamethasone. I do not know how you can be sure any stomach pain and shortness of breath is really a side effect of a particular medication, it could be a problem in and of itself and doctor should sort all this out.
My recommendation is to talk to your husband and get him to go into the hospital and see your oncologist as soon as possible if you are having severe and/or unexpected side effects from any medication your husband may be taking. From the symptoms you husband is describing you may want to take him straight to the ER.
My own doctors and the Beacon's myeloma specialist have said that dexamethasone is a critical component of myeloma treatment that is effective by itself but more importantly works with many other myeloma drugs to boost their effectiveness. If your husband has stopped dexamethasone I feel it is really important you let his oncologist know this ASAP. If dexamethasone is the problem with his pain and shortness of breath maybe they can adjust the dose or find another way to make it more tolerable.
I understand the frustration of taking time off work to get an appointment to find out that there is not much that can be done, but then there are the times it was really important I went in when I did or things may have gotten really bad if I had not.
I have had my own experiences with dexamethasone and have read many peoples experiences with dexamethasone on the Beacon. What you are describing and attributing to dexamethasone seems to be atypical. Shortness of sleep is very typical but not that kind of stomach pain.
There can be a lot of side effects from all the drugs myeloma patients take and from my own experience is not always clear what may be causing what. I had a period of really bad stomach pain to at one point in my treatment, but it was from opiate drugs, not dexamethasone. I do not know how you can be sure any stomach pain and shortness of breath is really a side effect of a particular medication, it could be a problem in and of itself and doctor should sort all this out.
My recommendation is to talk to your husband and get him to go into the hospital and see your oncologist as soon as possible if you are having severe and/or unexpected side effects from any medication your husband may be taking. From the symptoms you husband is describing you may want to take him straight to the ER.
My own doctors and the Beacon's myeloma specialist have said that dexamethasone is a critical component of myeloma treatment that is effective by itself but more importantly works with many other myeloma drugs to boost their effectiveness. If your husband has stopped dexamethasone I feel it is really important you let his oncologist know this ASAP. If dexamethasone is the problem with his pain and shortness of breath maybe they can adjust the dose or find another way to make it more tolerable.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Extreme dexamethasone side effects - may quit it
OD2, I am sorry to hear about what you and your husband are going through.
Dex does have both positive and negative effects. Dex is our friend when it comes to getting in remission faster and also getting a deeper remission. And dex can be our enemy when it comes to side effects and some of them can be quite serious.
I think the best thing to do is to communicate with your doctor about the severity of side effects. We don't know the exact right dose of dex and in this case it sounds like the dose and schedule is too much. Instead of stopping altogether, consider a dose reduction or a schedule change (less dex).
And I agree with Eric. If your husband is sick, call the doctor and get evaluated.
I wish you the best,
Jlk
Dex does have both positive and negative effects. Dex is our friend when it comes to getting in remission faster and also getting a deeper remission. And dex can be our enemy when it comes to side effects and some of them can be quite serious.
I think the best thing to do is to communicate with your doctor about the severity of side effects. We don't know the exact right dose of dex and in this case it sounds like the dose and schedule is too much. Instead of stopping altogether, consider a dose reduction or a schedule change (less dex).
And I agree with Eric. If your husband is sick, call the doctor and get evaluated.
I wish you the best,
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Extreme dexamethasone side effects - may quit it
My husband has been on dex more than off for the last 4 years. The worst side effect for him is the rise in his blood glucose levels. When I say rise, I mean between 400-600 with Lantus and glipizide, To help keep his sugar at least manageable, they lowered his dose to 20mg. His sugar is at least manageable with increased insulin. I will say that the 20mg does not seem to have the punch of the 40mg.
If your husband is having such abdominal pain, I would certainly at least put a call in to the doctor. It could be something more serious that just a dex side effect.
If your husband is having such abdominal pain, I would certainly at least put a call in to the doctor. It could be something more serious that just a dex side effect.
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Marie64 - Name: Marie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 45
Re: Extreme dexamethasone side effects - may quit it
First let me say I am sorry for what you and your husband are going thru. Been there for over 8 years and sorry to say it most likely is not the dex.
My husband was on 3x as much at different times and it is very important that he stay with it. It most likely is the melphalan, but you can't just stop that either. Today there are a lot of other options especially when you're just starting out. I know it's very scary but educate yourself, your husband is most likely angry right now at the diagnosis and is going to take it out on you. Needless to say the highs & lows of steroids don't help with that.
Talk to your doctors get second opinions. And the fact that they told you he's not an option for a transplant only means he's not an option for a transplant at THAT hospital! When my husband was first diagnosed ,they gave him six months to live, he also had the amniocentesis, he was in complete renal failure, seven fractured vertebrae, and problems with his heart. Since then he had (4) bone marrow transplants!
Every time my husband refused to go to the hospital I just called the ambulance. He's got to want to work with you! Good luck.
My husband was on 3x as much at different times and it is very important that he stay with it. It most likely is the melphalan, but you can't just stop that either. Today there are a lot of other options especially when you're just starting out. I know it's very scary but educate yourself, your husband is most likely angry right now at the diagnosis and is going to take it out on you. Needless to say the highs & lows of steroids don't help with that.
Talk to your doctors get second opinions. And the fact that they told you he's not an option for a transplant only means he's not an option for a transplant at THAT hospital! When my husband was first diagnosed ,they gave him six months to live, he also had the amniocentesis, he was in complete renal failure, seven fractured vertebrae, and problems with his heart. Since then he had (4) bone marrow transplants!
Every time my husband refused to go to the hospital I just called the ambulance. He's got to want to work with you! Good luck.
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PatRoof
Re: Extreme dexamethasone side effects - may quit it
My husband also has terrible side effects from dex. He decided after double stem cell transplant no dex. No guarantee dex will extend remission & quality of his life is more important. We will cross the bridge when & if myeloma comes back. One year remission now.
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Thoresen
Re: Extreme dexamethasone side effects - may quit it
Go to the doctor or hospital. I had abdominal pain last October while on dex and other meds in preparation for a SCT. I thought it may be caused by the sever constipation that was caused by the meds I was on. I waited a day too long and my appendix burst. You never know exactly what is causing the pain.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Extreme dexamethasone side effects - may quit it
OD2, Hello
Sorry to hear about the dexamethasone treatment issues. It's good to hear from others and their experience with this drug. For myself, I have been on Revlimid 25mg 21 days on with 7 off and dex once per week 40mg since the beginning of February 2014 with great results. Mentally I was ok with the Revlimid but not about the dex and the first time taking it i was very anxious and worried.
As it turns out, the dex has only made me a little hyper about 10 hours after taking it. I love regular coffee and know that would not be good so I tried one cup of decaf the day of taking the dex and the day after. It seams to work out ok. I usually have some toast, milk and a banana when I take it. I also try to go for long walks or ride my mountain bike around the neighborhood (about 4 to 5 miles) to burn up some of that energy.
What i do now notice is that I am getting some cramping in my fingers. They clinch together. It's usually the day of and a few days after taking dex. And it's usually compounded doing things like using a screwdriver twisting the wrist and fingers. I drink a lot of water during the day and evening but that doesn't help.
My wife works at a local hospital ER and if any serious side effects should happen after my oncologists is closed, I would definitely go in to the ER. My wife has seen my oncologist in the ER several times to treat his patients after his hours. And some times have them admitted for treatment there.
I know its hard to stay positive but even when I have a bad day due to other things besides multiple myeloma I will go for a walk and kind of vent those things away. What else can we really do? Stay down and be negative day and night? I guess that I am stubborn and unwilling to be negative.
Every visit to my oncologist I have to fill out a survey of about 20 questions. Some are related to depression, side effects, pain, and the like. A scale of 1 to 10. If your doctor has this type of survey, be honest and tell him how you feel, both mentally and fiscally. He can help you through it.
I work on heavy equipment for a living and this past January I broke several ribs which led to X-rays and blood work. I have been off work this whole time due to one of the ribs was broken and dislocated so the healing is slow. Being off work is my biggest issue. So I even talked to my oncologist about that.
Castaway
Sorry to hear about the dexamethasone treatment issues. It's good to hear from others and their experience with this drug. For myself, I have been on Revlimid 25mg 21 days on with 7 off and dex once per week 40mg since the beginning of February 2014 with great results. Mentally I was ok with the Revlimid but not about the dex and the first time taking it i was very anxious and worried.
As it turns out, the dex has only made me a little hyper about 10 hours after taking it. I love regular coffee and know that would not be good so I tried one cup of decaf the day of taking the dex and the day after. It seams to work out ok. I usually have some toast, milk and a banana when I take it. I also try to go for long walks or ride my mountain bike around the neighborhood (about 4 to 5 miles) to burn up some of that energy.
What i do now notice is that I am getting some cramping in my fingers. They clinch together. It's usually the day of and a few days after taking dex. And it's usually compounded doing things like using a screwdriver twisting the wrist and fingers. I drink a lot of water during the day and evening but that doesn't help.
My wife works at a local hospital ER and if any serious side effects should happen after my oncologists is closed, I would definitely go in to the ER. My wife has seen my oncologist in the ER several times to treat his patients after his hours. And some times have them admitted for treatment there.
I know its hard to stay positive but even when I have a bad day due to other things besides multiple myeloma I will go for a walk and kind of vent those things away. What else can we really do? Stay down and be negative day and night? I guess that I am stubborn and unwilling to be negative.
Every visit to my oncologist I have to fill out a survey of about 20 questions. Some are related to depression, side effects, pain, and the like. A scale of 1 to 10. If your doctor has this type of survey, be honest and tell him how you feel, both mentally and fiscally. He can help you through it.
I work on heavy equipment for a living and this past January I broke several ribs which led to X-rays and blood work. I have been off work this whole time due to one of the ribs was broken and dislocated so the healing is slow. Being off work is my biggest issue. So I even talked to my oncologist about that.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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