Hi I took 5 cycles of 25 mg of Revlimid and 40 mg of Dexamethason right after being diagnosed with Multiple Myeloma in late 2011 the combination got me down under 10% cancer cells in my plasma . I got an auto stem cell transplant in may of 2012 that got me down to 3%. My doctors give a maint program after transplant that I started in Sept of 2012 with a reduced Revlimid and a reduced dose of dexamethason of only 6 mg once a week. The reason for such a low dose of dex is that the drug is very, very hard for me to take. When I took the 40 mg i used to stand and scream in pain in my destroyed spine from the multiole myeloma having 7 broken vertebrae involved. It seemed like when I took Dex it felt like someone was welding in my spine and my muscles were getting driven wild , I could not stand the effects of the drug. Now on the much lower dose I take now it still is one of the most horrible days I have each week, then the crash 3 days after taking it I sleep 16 hours a day for at least 2 days.
I am just curious does Dex effect others the way it treats me? I have talked to others and it does not effect them as severely as it treats me. I absolutely hate what happens when I take this drug but take it I must. How about others or am I alone?
Ed
Forums
-
genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: How well are the side effects of dexamethason handled ?
Hi Ed,
I know what you mean about the problems with Dex- it is a very powerful drug both in good and bad ways. I don't have issues with pain from the Dex but know well the crash and for me it too is 3 days later. That's why I take my treatments on Wednesday so I crash over the weekend and can keep working. Its good that you know your body so you can plan accordingly.
A very long time ago when I was first diagnosed I was on 40mg Dex with Adriamycin and Doxirubicin (the old VAD). I actually diagnosed with amyloidosis and myeloma so my general health is considered a bit more fragile than most myeloma patients. My doctors who prescribed it were at MD Anderson but my treatments were done at George Washington Hosp in DC. Thet didn't think/know about taking antacids to help with the GI issues from the Dex and drugs. I got a severe case of gastritis- in the hospital for 3-4 days and very very sick. This a good reason to go to the best most experience centers who know the "side-issues".
Ed, I had genomic testing done on my multiple myeloma cells and one thing I/we learned was that my cells have very high Dex receptor (called glucocorticoid receptor) levels- actually in the top 20% so my cells are likely very sensitive to Dex. I relpased recently and went on 40mg Dex once a week with other drugs and had GI issues- mostly hiccups and some diarrhea. The high receptor levels allowed them to later reduce my doses to 20mg a week when we got my FLC counts down to almost normal.
Just a quick science question you might ask your doctors. It seems the effects of Dex might work against some of the effects of the Revlimid. Rev boosts the immune system, Dex suppresses it. I am approved for Rev but am resisting it so far getting very good response with Bortezomib, Cytoxan and Dex. If I ever went of Revlimid I would ask about changing the dose times so the drugs can work in synergy and not against each other. Dex's immunosuppression is probaly strongest for the first three days and Revlimid's immune boost is probably strongest for 3-4 days. This implies that maybe the Dex could be given on Thursday and Revlimid on Monday. I don't know of any studies on this but it makes logical sense to me and it is amazing how much research needs to be done to optimize the use of the many new myeloma drugs we have already. Some drug combinations are designed for a one-two punch against the cancer cells but for these drugs the effects can be delayed for Revlimid and both immediate and delayed for the Dex. I bet 5 years from now we will be much smarter in how we use these powerful drugs.
So you are not alone in your love/hate relationship with Dex. It is probably doing you a lot of good with your myeloma and there are ways to reduce some of the side-effects. Please talk to your doctors for their help.
I hope things get better for you and the treatments get easier not harder over time.
All my best,
Dan
genk wrote:
> Hi I took 5 cycles of 25 mg of Revlimid and 40 mg of Dexamethason right
> after being diagnosed with Multiple Myeloma in late 2011 the combination
> got me down under 10% cancer cells in my plasma . I got an auto stem cell
> transplant in may of 2012 that got me down to 3%. My doctors give a maint
> program after transplant that I started in Sept of 2012 with a reduced
> Revlimid and a reduced dose of dexamethason of only 6 mg once a week. The
> reason for such a low dose of dex is that the drug is very, very hard for
> me to take. When I took the 40 mg i used to stand and scream in pain in my
> destroyed spine from the multiole myeloma having 7 broken vertebrae
> involved. It seemed like when I took Dex it felt like someone was welding
> in my spine and my muscles were getting driven wild , I could not stand the
> effects of the drug. Now on the much lower dose I take now it still is one
> of the most horrible days I have each week, then the crash 3 days after
> taking it I sleep 16 hours a day for at least 2 days.
>
> I am just curious does Dex effect others the way it treats me? I have
> talked to others and it does not effect them as severely as it treats me. I
> absolutely hate what happens when I take this drug but take it I must. How
> about others or am I alone?
>
> Ed
I know what you mean about the problems with Dex- it is a very powerful drug both in good and bad ways. I don't have issues with pain from the Dex but know well the crash and for me it too is 3 days later. That's why I take my treatments on Wednesday so I crash over the weekend and can keep working. Its good that you know your body so you can plan accordingly.
A very long time ago when I was first diagnosed I was on 40mg Dex with Adriamycin and Doxirubicin (the old VAD). I actually diagnosed with amyloidosis and myeloma so my general health is considered a bit more fragile than most myeloma patients. My doctors who prescribed it were at MD Anderson but my treatments were done at George Washington Hosp in DC. Thet didn't think/know about taking antacids to help with the GI issues from the Dex and drugs. I got a severe case of gastritis- in the hospital for 3-4 days and very very sick. This a good reason to go to the best most experience centers who know the "side-issues".
Ed, I had genomic testing done on my multiple myeloma cells and one thing I/we learned was that my cells have very high Dex receptor (called glucocorticoid receptor) levels- actually in the top 20% so my cells are likely very sensitive to Dex. I relpased recently and went on 40mg Dex once a week with other drugs and had GI issues- mostly hiccups and some diarrhea. The high receptor levels allowed them to later reduce my doses to 20mg a week when we got my FLC counts down to almost normal.
Just a quick science question you might ask your doctors. It seems the effects of Dex might work against some of the effects of the Revlimid. Rev boosts the immune system, Dex suppresses it. I am approved for Rev but am resisting it so far getting very good response with Bortezomib, Cytoxan and Dex. If I ever went of Revlimid I would ask about changing the dose times so the drugs can work in synergy and not against each other. Dex's immunosuppression is probaly strongest for the first three days and Revlimid's immune boost is probably strongest for 3-4 days. This implies that maybe the Dex could be given on Thursday and Revlimid on Monday. I don't know of any studies on this but it makes logical sense to me and it is amazing how much research needs to be done to optimize the use of the many new myeloma drugs we have already. Some drug combinations are designed for a one-two punch against the cancer cells but for these drugs the effects can be delayed for Revlimid and both immediate and delayed for the Dex. I bet 5 years from now we will be much smarter in how we use these powerful drugs.
So you are not alone in your love/hate relationship with Dex. It is probably doing you a lot of good with your myeloma and there are ways to reduce some of the side-effects. Please talk to your doctors for their help.
I hope things get better for you and the treatments get easier not harder over time.
All my best,
Dan
genk wrote:
> Hi I took 5 cycles of 25 mg of Revlimid and 40 mg of Dexamethason right
> after being diagnosed with Multiple Myeloma in late 2011 the combination
> got me down under 10% cancer cells in my plasma . I got an auto stem cell
> transplant in may of 2012 that got me down to 3%. My doctors give a maint
> program after transplant that I started in Sept of 2012 with a reduced
> Revlimid and a reduced dose of dexamethason of only 6 mg once a week. The
> reason for such a low dose of dex is that the drug is very, very hard for
> me to take. When I took the 40 mg i used to stand and scream in pain in my
> destroyed spine from the multiole myeloma having 7 broken vertebrae
> involved. It seemed like when I took Dex it felt like someone was welding
> in my spine and my muscles were getting driven wild , I could not stand the
> effects of the drug. Now on the much lower dose I take now it still is one
> of the most horrible days I have each week, then the crash 3 days after
> taking it I sleep 16 hours a day for at least 2 days.
>
> I am just curious does Dex effect others the way it treats me? I have
> talked to others and it does not effect them as severely as it treats me. I
> absolutely hate what happens when I take this drug but take it I must. How
> about others or am I alone?
>
> Ed
-
Dan in Phoenix
Re: How well are the side effects of dexamethason handled ?
Dex is effective but is poison; when too much is used in combination with Revlimid, death increases, pure and simple.
I, like everyone else, am taking this drug, however, but because dosage is anything but an exact science, I take it with some flexibility, I now take about 20-24 mgs per week rather than 40 because I do not like the groggy, dizzy, sleepy feeling that takes over about 3 days after taking the 40 mg dose and that itself lasts about 2 days.
I also have observed in several recent blogs or entries that others have switched to Medrol or to prednisone. And I wonder whether these options - although maybe not as strong - may not come with the same panel of side effects. My onc does not seem to care; his view is that if it is working, don't change it, and, in fact, he seems to think that I should take this for as long as I can tolerate it, meaning years and years......he does not consider these side effects and the general toxicty of steroids on the body....one more aspect of cancer treatment I love; you are screwed so do what you are told...don't think so...
I, like everyone else, am taking this drug, however, but because dosage is anything but an exact science, I take it with some flexibility, I now take about 20-24 mgs per week rather than 40 because I do not like the groggy, dizzy, sleepy feeling that takes over about 3 days after taking the 40 mg dose and that itself lasts about 2 days.
I also have observed in several recent blogs or entries that others have switched to Medrol or to prednisone. And I wonder whether these options - although maybe not as strong - may not come with the same panel of side effects. My onc does not seem to care; his view is that if it is working, don't change it, and, in fact, he seems to think that I should take this for as long as I can tolerate it, meaning years and years......he does not consider these side effects and the general toxicty of steroids on the body....one more aspect of cancer treatment I love; you are screwed so do what you are told...don't think so...
-
Dan D
Re: How well are the side effects of dexamethason handled ?
I have been in treatment for 4 years and have been on Dex all 4 of those years. I have taken it in combination with Revlimid and Velcade. Of these 3 drugs it has only been the dex that I experience phisical side effects. (I don not have issues with PN like many Velcade and Revlimid users have experienced). In my case the dex effects last about 2 days. I was on 40 mg every week when I was first diagonosed but after about 9 months of treatment the dex was reduced down first to 20 mg every week then finally to my current protocal of 20 mg every 2 weeks.
My side effects with Dex- (worse with the higher doses)
Negative side effects
Flushness in the face after the first 24 hours - that lasts for 24 hours.
Hickups - had more problems with this when I was dosing once a week and at 40 mg
insomnia - the first 2 nights - effect has been the same even at 20 mg
moodiness and short tempered - worse at the higher doses
elevated heart rate - worse with the higher doses
higher blood preasure - lasts 48 hours - again worse at higher doses
scater brained and impared logic - sporadic and worse with higher dosing
Positive side effects
more focused and can get more things done - last about 24 - 30 hours
arthritis pain greatly diminished - better range of motion
Alergy relief during alergy season- due to supression of imune system
Ron
My side effects with Dex- (worse with the higher doses)
Negative side effects
Flushness in the face after the first 24 hours - that lasts for 24 hours.
Hickups - had more problems with this when I was dosing once a week and at 40 mg
insomnia - the first 2 nights - effect has been the same even at 20 mg
moodiness and short tempered - worse at the higher doses
elevated heart rate - worse with the higher doses
higher blood preasure - lasts 48 hours - again worse at higher doses
scater brained and impared logic - sporadic and worse with higher dosing
Positive side effects
more focused and can get more things done - last about 24 - 30 hours
arthritis pain greatly diminished - better range of motion
Alergy relief during alergy season- due to supression of imune system
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: How well are the side effects of dexamethason handled ?
FYI: My onc is not yet aware that I am adjusting the dose - I will let the results guide me - not his advice; he is very new and very young but very smart and amibitious ... OK for now, although I don't believe he has the experience to offer a long term plan - and yes, I plan to outlive the cure, but that means not using or becoming refractory to all effective treatment options. As a doctoral research scientist, I am also not operating from a postion of no logic.
Why do I say all this: speak up - and let your body be the guide.
Why do I say all this: speak up - and let your body be the guide.
-
Dan D
Re: How well are the side effects of dexamethason handled ?
My experiences exactly as noted previously
Negative side effects
Flushness in the face after the first 24 hours - that lasts for 24 hours.
Hickups - had more problems with this when I was dosing once a week and at 40 mg
insomnia - the first 2 nights - effect has been the same even at 20 mg
moodiness and short tempered - worse at the higher doses
elevated heart rate - worse with the higher doses
higher blood preasure - lasts 48 hours - again worse at higher doses
scater brained and impared logic - sporadic and worse with higher dosing
Negative side effects
Flushness in the face after the first 24 hours - that lasts for 24 hours.
Hickups - had more problems with this when I was dosing once a week and at 40 mg
insomnia - the first 2 nights - effect has been the same even at 20 mg
moodiness and short tempered - worse at the higher doses
elevated heart rate - worse with the higher doses
higher blood preasure - lasts 48 hours - again worse at higher doses
scater brained and impared logic - sporadic and worse with higher dosing
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: How well are the side effects of dexamethason handled ?
When I was doing induction chemo, i also switched from a dex dose of 40 mg to 20 mg since I couldn't handle the higher dose. My oncologist was sympathetic , and adjusted it down for me. My induction still went fine! Probably your onco is aware of different dosing regimens for deX, Dan!
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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: How well are the side effects of dexamethason handled ?
Nancy: thank you for that insight. For me, the Dex high is not crazy mania or pain - as others have described experienced - but actually a day or two of heightened mental clarity and an increased ability to multi-task - although I still procrastinate on BIG projects! But the two days of fuzziness that follows is a drag, and I don't think its main source is sleep deprivation. I think I get enough sleep in total.
Speaking more generally about reducing doses, I also was thinking -- in line with the less is more approach - that when one has achived a large percent reduction in M-protein (in my case greater than 90 percent), why it is still necesary to continue with the same large starting doses.
In other words, I think that maintenance should be more appropriately regarded as an on-going process, so that in which doses are reduced to their minimal effective levels. Doing so may be important for survival: some clinicians point out that if one does experience relapse, sometimes just increasing the dose of what you are already one can do the trick. But if you are already at the ceiling of such doses, there is no place to go. So if I am taking 25 daily of rev and 40 mg weekly of dex, I would have to look for other drugs.
Again, this underlines the need for a long-term approach, so in the not too distant future we all can be free of the mental uncertainty (at least) of this disease -- if not the disease altogether. But we have to get there first!
Speaking more generally about reducing doses, I also was thinking -- in line with the less is more approach - that when one has achived a large percent reduction in M-protein (in my case greater than 90 percent), why it is still necesary to continue with the same large starting doses.
In other words, I think that maintenance should be more appropriately regarded as an on-going process, so that in which doses are reduced to their minimal effective levels. Doing so may be important for survival: some clinicians point out that if one does experience relapse, sometimes just increasing the dose of what you are already one can do the trick. But if you are already at the ceiling of such doses, there is no place to go. So if I am taking 25 daily of rev and 40 mg weekly of dex, I would have to look for other drugs.
Again, this underlines the need for a long-term approach, so in the not too distant future we all can be free of the mental uncertainty (at least) of this disease -- if not the disease altogether. But we have to get there first!
-
Dan D
Re: How well are the side effects of dexamethason handled ?
When I was taking 40mg dex on Mondays once a week I would get really bad insomnia, elevated heart rate up to 110, blood pressure about the same, and I would talk too much. I do not remember having impaired cognitive abilities. I have never heard anyone having pains from dex before until now. For me, it seemed to help my back pain my attacking the myeloma.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How well are the side effects of dexamethason handled ?
Hello,
My husband has insomnia the first two nights after taking 20mg Dex and now takes Ambien to sleep those first two nights. His face also gets flushed and puffy from water retention for a few days. He'll crash a couple of days after taking the Dex and usually for about 2 days he'll be very tired, although he will still push himself to do things he thinks he needs to. He got easily irritated in the beginning but not as easily now, I think he tries to scale it back a bit because it was getting to me...
Another problem he experienced has been cataracts and glaucoma that the ophthalmologist said were due to his longterm use of steroids (about 20 months now). He had surgery to remove the cataracts from both eyes and has eye drops to reduce the glaucoma pressure in his eyes. The Dr hopes that once he's done with the Dex this summer--assuming he goes on maintenance Revlimid only at that time--the pressure will hopefully drop and glaucoma won't be a longterm concern. Glaucoma can cause blindness though, so this is being watched closely.
My husband has insomnia the first two nights after taking 20mg Dex and now takes Ambien to sleep those first two nights. His face also gets flushed and puffy from water retention for a few days. He'll crash a couple of days after taking the Dex and usually for about 2 days he'll be very tired, although he will still push himself to do things he thinks he needs to. He got easily irritated in the beginning but not as easily now, I think he tries to scale it back a bit because it was getting to me...
Another problem he experienced has been cataracts and glaucoma that the ophthalmologist said were due to his longterm use of steroids (about 20 months now). He had surgery to remove the cataracts from both eyes and has eye drops to reduce the glaucoma pressure in his eyes. The Dr hopes that once he's done with the Dex this summer--assuming he goes on maintenance Revlimid only at that time--the pressure will hopefully drop and glaucoma won't be a longterm concern. Glaucoma can cause blindness though, so this is being watched closely.
-
Chris M
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