My husband was on dexamethasone for 2 years and it was nearly the end of our 54-year marriage. He made horrendous accusations towards me, was surly and extremely difficult to be around. Always acted as if "someone was out to get him". This usually was me.
I finally told his doctor he had to find another drug and take my husband off or the marriage was over. I was then informed that he had other patients with the same anger issues and with marriages in tatters. My husband became physically abusive on one occasion. He had no remorse and seemed to feel he was "justified" in using these measures.
I feel sorry for your family as you have to deal with the myeloma and now this. Doctors should be more open about the side effects.
Forums
Re: Dexamethasone and anger issues
Charliegirl,
Your Dad is on a very high dose of dex. I just about went nuts on half of that amount, and told my oncologist I refused to live that way. The dosage was even further reduced, and everything worked out fine. A couple of years ago Mayo Clinic released info on lower dosages of dex being as effective as the higher doses. You might want to research it. Please contact his oncologist.
Best wishes.
Your Dad is on a very high dose of dex. I just about went nuts on half of that amount, and told my oncologist I refused to live that way. The dosage was even further reduced, and everything worked out fine. A couple of years ago Mayo Clinic released info on lower dosages of dex being as effective as the higher doses. You might want to research it. Please contact his oncologist.
Best wishes.
Re: Dexamethasone and anger issues
My husband has been on dexamethasone, Aloxi, and Velcade for two years, and he hasn't displayed any anger issues of yet. He also has dementia, going on 8 years, which effects your emotions, but so far so good.
Re: Dexamethasone and anger issues
Greetings,
I was a bit moody while on dex, but the scary stuff occurred when I was taken off dex. I experienced what I'm sure was some withdrawal symptoms. Extreme moods, hyped anger, and taking it out on the poor soul who was nearest to me at the time.
Counseling helped as I knew my partner didn't deserve the treatment he was receiving from me.
Be well.
I was a bit moody while on dex, but the scary stuff occurred when I was taken off dex. I experienced what I'm sure was some withdrawal symptoms. Extreme moods, hyped anger, and taking it out on the poor soul who was nearest to me at the time.
Counseling helped as I knew my partner didn't deserve the treatment he was receiving from me.
Be well.
-
Gus Madrigal
Re: Dexamethasone and anger issues
Is there a reason why your father is on dexamethasone 4 days a week? That is a very high dose. Dex is usually given once a week. I would talk with the oncologist to find out why such a high dose.
It s sounds like your father is seeing a general oncologist and not a myeloma specialist. I would also suggest that your father have a consult with a myeloma specialist. A myeloma specialist is an oncologist who only treats people with myeloma and also does research in myeloma. We can help you find one neatest to you if you let us know where you are located. Your parents may have to travel to see one. But most specialists will coordinate care with the local oncologist so you don't have to travel to the specialist too often.
This is a really important issue. Your family shouldn't have to live with your fathers rages because he is being over medicated on dex.
All the best to your father and your family,
Nancy in Phila
It s sounds like your father is seeing a general oncologist and not a myeloma specialist. I would also suggest that your father have a consult with a myeloma specialist. A myeloma specialist is an oncologist who only treats people with myeloma and also does research in myeloma. We can help you find one neatest to you if you let us know where you are located. Your parents may have to travel to see one. But most specialists will coordinate care with the local oncologist so you don't have to travel to the specialist too often.
This is a really important issue. Your family shouldn't have to live with your fathers rages because he is being over medicated on dex.
All the best to your father and your family,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Dexamethasone and anger issues
Hi CharlieGirl,
As you can tell, the experience your father is having with dexamethasone is by no means unusual, even if it is at the far end of the spectrum.
I do want to say, however, that there may be sound reasons for your father's doctor prescribing the dexamethasone dose he was originally given.
It is true that the Mayo Clinic published an important study more than 5 years ago showing lower dose dexamethasone, when combined with Revlimid, leads to higher overall survival than higher-dose dexamethasone. But here's what "higher" and "lower" dose dex was in that study:
Higher dose - 40 mg 4 days a week for 3 out of 4 weeks
Lower dose - 40 mg 1 day a week for 4 out of 4 weeks
So the "higher dose" was REALLY high.
Also, even though overall survival was higher in the LOWER dose patients, this apparently was because of side effects. The patients who got the higher dose of dex were more likely to get a deeper response to treatment, which generally will lead to longer survival if the side effects of treatment can be controlled.
Although lower doses of dex are more common now in the U.S., that is partly because many patients are given treatment that includes three drugs, or given treatment longer than in other countries.
Your father's doctors may have chosen the (somewhat) higher doses of dexamethasone because of restrictions on the other medications they can give your father at the same time, or how long they can treat your father, or other constraints. We here do not know the full picture.
So, yes, it's definitely worth discussing lowering the dose of dex with your father's doctors. But, despite what the many armchair physicians have suggested earlier in this thread, the fact that your father's doctors have prescribed a higher dose of dex does not automatically mean they are inept or out of step with current myeloma research. Those kind of statements are why doctors so often roll their eyes when someone says "Well, I read on the Internet that ... "
In case it's helpful, here's a reference to the Mayo Clinic study about higher- versus lower-dose dexamethasone:
SV Rajkumar et al, "Lenalidomide plus high-dose dexamethasone versus lenalidomide plus low-dose dexamethasone as initial therapy for newly diagnosed multiple myeloma: an open-label randomised controlled trial," The Lancet Oncology, January 2010 (abstract, full text of article at PubMed)
Good luck!
As you can tell, the experience your father is having with dexamethasone is by no means unusual, even if it is at the far end of the spectrum.
I do want to say, however, that there may be sound reasons for your father's doctor prescribing the dexamethasone dose he was originally given.
It is true that the Mayo Clinic published an important study more than 5 years ago showing lower dose dexamethasone, when combined with Revlimid, leads to higher overall survival than higher-dose dexamethasone. But here's what "higher" and "lower" dose dex was in that study:
Higher dose - 40 mg 4 days a week for 3 out of 4 weeks
Lower dose - 40 mg 1 day a week for 4 out of 4 weeks
So the "higher dose" was REALLY high.
Also, even though overall survival was higher in the LOWER dose patients, this apparently was because of side effects. The patients who got the higher dose of dex were more likely to get a deeper response to treatment, which generally will lead to longer survival if the side effects of treatment can be controlled.
Although lower doses of dex are more common now in the U.S., that is partly because many patients are given treatment that includes three drugs, or given treatment longer than in other countries.
Your father's doctors may have chosen the (somewhat) higher doses of dexamethasone because of restrictions on the other medications they can give your father at the same time, or how long they can treat your father, or other constraints. We here do not know the full picture.
So, yes, it's definitely worth discussing lowering the dose of dex with your father's doctors. But, despite what the many armchair physicians have suggested earlier in this thread, the fact that your father's doctors have prescribed a higher dose of dex does not automatically mean they are inept or out of step with current myeloma research. Those kind of statements are why doctors so often roll their eyes when someone says "Well, I read on the Internet that ... "
In case it's helpful, here's a reference to the Mayo Clinic study about higher- versus lower-dose dexamethasone:
SV Rajkumar et al, "Lenalidomide plus high-dose dexamethasone versus lenalidomide plus low-dose dexamethasone as initial therapy for newly diagnosed multiple myeloma: an open-label randomised controlled trial," The Lancet Oncology, January 2010 (abstract, full text of article at PubMed)
Good luck!
Re: Dexamethasone and anger issues
The dosage of 20 mg 4 times a week is very high! The standard dose is 40 mg once a week. That is called "low dose". There are studies which have shown that low dose dex works better with less side effects and is thus better tolerated.
Here is one study showing that low dose dex in combination with Revlimid was more effective than Revlimid with high dose dex:
"Study Shows Higher Survival With Revlimid And Low-Dose Dexamethasone Than Revlimid And High-Dose Dexamethasone In Multiple Myeloma Patients," The Myeloma Beacon, Oct 27, 2009
Hope this helps. There are other studies that come to the same conclusion. Most oncologists have moved away from high dose dex.
You should discuss this with your dad's oncologist.
Here is one study showing that low dose dex in combination with Revlimid was more effective than Revlimid with high dose dex:
"Study Shows Higher Survival With Revlimid And Low-Dose Dexamethasone Than Revlimid And High-Dose Dexamethasone In Multiple Myeloma Patients," The Myeloma Beacon, Oct 27, 2009
Hope this helps. There are other studies that come to the same conclusion. Most oncologists have moved away from high dose dex.
You should discuss this with your dad's oncologist.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Dexamethasone and anger issues
Hi Ron,
The Beacon article you mention is a summary of the research study I describe in my posting earlier in this thread. That study is one of the best-known myeloma research publications of the past 10 years. It would be surprising if CharlieGirl's doctors do not know of it, or that they are unaware of the dexamethasone dosing that has been used in recent clinical trials.
In my eyes, it takes a lot of hubris for any patient or caregiver here to think they can explicitly or implicitly belittle the treatment decisions CharlieGirl's father's doctors have made, the way some people in this thread have. As well-known as the higher-dose dex vs. lower-dose dex study is, there are parts of the world where informed physicians believe higher-dose dex is still a useful tool in certain situations when treating myeloma patients.
Doctors may choose to use the higher-dose dex in combination with Velcade, rather than with Revlimid (as in the case of CharlieGirl's father's situation). Note that the study I mentioned earlier investigated higher and lower dose dex in combination with Revlimid, not Velcade.
Doctors also may choose to use higher-dose dex for short periods of time to get the disease under control quickly, particularly in cases where adding a third drug – such as Revlimid or thalidomide – may not be possible for reimbursement reasons, or due to the patient's other health issues (for example, kidney issues).
The doctors treating CharlieGirl's father's almost certainly have reasons for doing what they've done. It doesn't help CharlieGirl if people who don't know all the details about her father's situation say things that might scare her about the quality of care her father is getting.
I'm all for patient enpowerment and patient's learning as much as possible about their disease. Anyone who knows my history of posting here in the forum knows that I encourage both. But I rarely feel it is correct to question the treatment decisions another patient's doctors have made, because they almost certainly have more experience, and more information about the specific case, than I do.
The Beacon article you mention is a summary of the research study I describe in my posting earlier in this thread. That study is one of the best-known myeloma research publications of the past 10 years. It would be surprising if CharlieGirl's doctors do not know of it, or that they are unaware of the dexamethasone dosing that has been used in recent clinical trials.
In my eyes, it takes a lot of hubris for any patient or caregiver here to think they can explicitly or implicitly belittle the treatment decisions CharlieGirl's father's doctors have made, the way some people in this thread have. As well-known as the higher-dose dex vs. lower-dose dex study is, there are parts of the world where informed physicians believe higher-dose dex is still a useful tool in certain situations when treating myeloma patients.
Doctors may choose to use the higher-dose dex in combination with Velcade, rather than with Revlimid (as in the case of CharlieGirl's father's situation). Note that the study I mentioned earlier investigated higher and lower dose dex in combination with Revlimid, not Velcade.
Doctors also may choose to use higher-dose dex for short periods of time to get the disease under control quickly, particularly in cases where adding a third drug – such as Revlimid or thalidomide – may not be possible for reimbursement reasons, or due to the patient's other health issues (for example, kidney issues).
The doctors treating CharlieGirl's father's almost certainly have reasons for doing what they've done. It doesn't help CharlieGirl if people who don't know all the details about her father's situation say things that might scare her about the quality of care her father is getting.
I'm all for patient enpowerment and patient's learning as much as possible about their disease. Anyone who knows my history of posting here in the forum knows that I encourage both. But I rarely feel it is correct to question the treatment decisions another patient's doctors have made, because they almost certainly have more experience, and more information about the specific case, than I do.
Re: Dexamethasone and anger issues
Dear Charlie,
I am sure you have heard the term roid rage. Well, guess what? It's true. I was on the same doses as your father. As treatment progressed, my doses reduced. As ashamed as I am to say it, there were moments when I had to remove myself from my children because I could feel rage consuming me. Thankfully, I recognized this abnormality in behavior and removed myself. I can honestly say to you, though, that it really was out of my control. Thankfully, the high doses only lasted about 3 months.
When they reduced me, however, I had another effect, and that was crying at the drop of a hat. Again, out of my control, and definitely not characteristic of me.
My doctor warned me of the potential rages and mood swings when I started. However, I was given no warning about the down side.
Perhaps talk to your dad about it. And when he feels the anger rising to let your mum know or remove himself until he calms down.
Vicki
I am sure you have heard the term roid rage. Well, guess what? It's true. I was on the same doses as your father. As treatment progressed, my doses reduced. As ashamed as I am to say it, there were moments when I had to remove myself from my children because I could feel rage consuming me. Thankfully, I recognized this abnormality in behavior and removed myself. I can honestly say to you, though, that it really was out of my control. Thankfully, the high doses only lasted about 3 months.
When they reduced me, however, I had another effect, and that was crying at the drop of a hat. Again, out of my control, and definitely not characteristic of me.
My doctor warned me of the potential rages and mood swings when I started. However, I was given no warning about the down side.
Perhaps talk to your dad about it. And when he feels the anger rising to let your mum know or remove himself until he calms down.
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Dexamethasone and anger issues
I think many of you can relate to this poem I wrote when I was finishing up almost three years of treatment with dexamethasone
Dex Reflections
I sit in the warm grainy sand.
Back and forth I massage my tingly toes and feet in the warmth of the grains.
Messaging my mind with myeloma thoughts.
Always there when my world is quiet.
The hot sun warms my cold bones,
my chemo curls.
The hot sun melts into my parched skin
dried from drugs, and side effects.
I don’t recognize parts of this body anymore.
Portraits from my past are just faint ripples
of my reflection in the water now.
My youthful appearance changes as the effects
of dex puff and fluff shaking my nerves, my hands, my patience.
The dex waves this week seem stronger.
The foaming swirls swoosh up to my ankles.
lapping at my soul.
threatening to overcome my positive thoughts
my marching-forward-attitude, my sunshine.
I breathe deep, sleep more, try to protect my children from my pain.
I’m hiding my slacking energy behind the strong shoulders of my beloved.
I breathe, I wait, I pray, and then...
The draining dex waves slink back into the sea
and once again I can see the hidden gifts left behind
in the wet, cool, sand.
The shiny twisted shells of miracles.
Each one a unique blessing.
The life I have been given, the smooth, peaceful thoughts of family, love, God.
The tender mercies of my Saviour glistening among the grains.
and I arise stiffly, slowly and walk back to my world preparing for another round.
Dex Reflections
I sit in the warm grainy sand.
Back and forth I massage my tingly toes and feet in the warmth of the grains.
Messaging my mind with myeloma thoughts.
Always there when my world is quiet.
The hot sun warms my cold bones,
my chemo curls.
The hot sun melts into my parched skin
dried from drugs, and side effects.
I don’t recognize parts of this body anymore.
Portraits from my past are just faint ripples
of my reflection in the water now.
My youthful appearance changes as the effects
of dex puff and fluff shaking my nerves, my hands, my patience.
The dex waves this week seem stronger.
The foaming swirls swoosh up to my ankles.
lapping at my soul.
threatening to overcome my positive thoughts
my marching-forward-attitude, my sunshine.
I breathe deep, sleep more, try to protect my children from my pain.
I’m hiding my slacking energy behind the strong shoulders of my beloved.
I breathe, I wait, I pray, and then...
The draining dex waves slink back into the sea
and once again I can see the hidden gifts left behind
in the wet, cool, sand.
The shiny twisted shells of miracles.
Each one a unique blessing.
The life I have been given, the smooth, peaceful thoughts of family, love, God.
The tender mercies of my Saviour glistening among the grains.
and I arise stiffly, slowly and walk back to my world preparing for another round.
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