I have been reading up on dexamethasone on this forum with some trepidation. I am on a CyBorD induction therapy (Velcade, cyclophosphamide, and dexamethasone) at the moment and just finished 2 cycles.
I have taken 10 x 4 mg tablets (40 mg) of dexamethasone daily on days 1-4, 9-12 and 17-20 for each of these two 22 day cycles (December and January). That is 480 mg of dex each cycle.
I just started my third cycle (February) and the frequency of the 40 mg dosage has been reduced to 1 x 40 mg dose per week (4 per cycle = 160 mg).
This is obviously much higher than the low dosage described in many of the forum posts I have read. I do have insomnia, and feel my feet tingling (peripheral neuropathy?). Overall, though, I have been tolerant of this steroid, and my M-spike has come down from 39 g/L (3.9 g/dL) at the end of November to 21.1 g/L (2.11 g/dL) on January 6 to 10.4 g/L (1.04 g/dL) on February 3. (Reference range is 7 to 14 g/L at the lab I am using). I am excited about this decrease in the M-spike, naturally, but I am concerned about the levels of dexamethasone.
I was told at the cancer clinic that the dexamethasone would be reduced after the first two cycles. I am just wondering whether this sort of regimen is common. Thanks.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Dexamethasone dose during CyBorD?
Hello,
I am a caregiver to my father who has been through almost all treatment combinations. In my dad's experience, we believe the high-dose dexamethasone pulses (40 mg daily x 4 days) have been a major contributor to keeping the resurgence of multiple myeloma at bay. Totally hear you in the concerns for high dose steroids, but the reality of myeloma is that it can come back presenting as a higher risk form. For my dad, he has chosen to keep up on the high dose pulses. I suspect it's a common treatment, and he's decided that his quality of life is manageable.
Sorry, not first-hand experience, I don't know what it feels like. But I thought it wouldn't hurt to convey that, yeah, other folks get that much. Hang in there!
I am a caregiver to my father who has been through almost all treatment combinations. In my dad's experience, we believe the high-dose dexamethasone pulses (40 mg daily x 4 days) have been a major contributor to keeping the resurgence of multiple myeloma at bay. Totally hear you in the concerns for high dose steroids, but the reality of myeloma is that it can come back presenting as a higher risk form. For my dad, he has chosen to keep up on the high dose pulses. I suspect it's a common treatment, and he's decided that his quality of life is manageable.
Sorry, not first-hand experience, I don't know what it feels like. But I thought it wouldn't hurt to convey that, yeah, other folks get that much. Hang in there!
Re: Dexamethasone dose during CyBorD?
Hello Colin!
My husband did CyBorD as induction chemo in December 2014, prior to a stem cell transplant in August 2015. I do recall him taking 40 mg dex each week of a cycle, which we had to split into 2 days of 20 mg doses because of insomnia. He continued this same dose of dex right up until the transplant. He did 7 cycles of CyBorD; after 6 cycles, he was in remission and we decided to go on a mini-vacation prior to his transplant. The vacation delayed his transplant by a month, hence the 7th cycle of CyBorD.
Since the transplant, he started on maintenance with Velcade and 10 mg dex weekly, but has been changed to Velcade only just recently. He remains in a "sustained" remission (per our myeloma specialist) and is doing well, all things considered.
I do hope that you will continue to see a drop in your M-spike. One thing you mentioned was the tingling in your feet. That may be from the Velcade, and you should mention it to your doctor.
Good luck to you in the coming days!
My husband did CyBorD as induction chemo in December 2014, prior to a stem cell transplant in August 2015. I do recall him taking 40 mg dex each week of a cycle, which we had to split into 2 days of 20 mg doses because of insomnia. He continued this same dose of dex right up until the transplant. He did 7 cycles of CyBorD; after 6 cycles, he was in remission and we decided to go on a mini-vacation prior to his transplant. The vacation delayed his transplant by a month, hence the 7th cycle of CyBorD.
Since the transplant, he started on maintenance with Velcade and 10 mg dex weekly, but has been changed to Velcade only just recently. He remains in a "sustained" remission (per our myeloma specialist) and is doing well, all things considered.
I do hope that you will continue to see a drop in your M-spike. One thing you mentioned was the tingling in your feet. That may be from the Velcade, and you should mention it to your doctor.
Good luck to you in the coming days!
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ByYourSide - Name: Susan
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 65
Re: Dexamethasone dose during CyBorD?
Thanks ByYourSide.
Just finished my third cycle and my first at the reduced dosage of 40 mg per week of dexamethasone. The first 2 weeks of the February cycle I experienced two consecutive nights of insomnia following each treatment day (with cyclophosphamide and dex pills in the morning and the Velcade injection in the afternoon). But this week I managed to get it down to one night of insomnia. One night of poor sleep is so much more manageable than two nights and doesn't cause excessive fatigue.
I have discussed the neuropathy with my treatment doctors and nurses and it seems to still be reasonably mild, although I haven't really got a proper measuring stick for it.
I have started to add short intervals of running to my walking and am pleased with the progress so far. I am careful not to get over zealous on the running in fear of causing more bone pain. But it feels great to open up the possibilities of returning to an activity I love very much.
Getting more blood work done this Friday and hoping the downward trend in the M-spike will continue.
Just finished my third cycle and my first at the reduced dosage of 40 mg per week of dexamethasone. The first 2 weeks of the February cycle I experienced two consecutive nights of insomnia following each treatment day (with cyclophosphamide and dex pills in the morning and the Velcade injection in the afternoon). But this week I managed to get it down to one night of insomnia. One night of poor sleep is so much more manageable than two nights and doesn't cause excessive fatigue.
I have discussed the neuropathy with my treatment doctors and nurses and it seems to still be reasonably mild, although I haven't really got a proper measuring stick for it.
I have started to add short intervals of running to my walking and am pleased with the progress so far. I am careful not to get over zealous on the running in fear of causing more bone pain. But it feels great to open up the possibilities of returning to an activity I love very much.
Getting more blood work done this Friday and hoping the downward trend in the M-spike will continue.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Dexamethasone dose during CyBorD?
Hi Colin:
I was on the same induction therapy (CyBorD) for 6 cycles, with the dex being 40 mg once a week, and was very fortunate that I had little to no side effects from the steroids. Also within those 6 months I had an anterior ischemic optic neuropathy (AION) episode in my right eye, that they attempted to treat with 1000 mg of dex a day for 7 days, and 2 blood transfusions. During that week I had insomnia - felt wonderful, but unfortunately it did nothing to improve the sight in my eye. The only side effect that I had from that experience was a 20-pound weight gain
which I am still struggling to get off.
Your treatment doesn't seem to me to be unusual.
Best of luck.
I was on the same induction therapy (CyBorD) for 6 cycles, with the dex being 40 mg once a week, and was very fortunate that I had little to no side effects from the steroids. Also within those 6 months I had an anterior ischemic optic neuropathy (AION) episode in my right eye, that they attempted to treat with 1000 mg of dex a day for 7 days, and 2 blood transfusions. During that week I had insomnia - felt wonderful, but unfortunately it did nothing to improve the sight in my eye. The only side effect that I had from that experience was a 20-pound weight gain
which I am still struggling to get off.Your treatment doesn't seem to me to be unusual.
Best of luck.
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Dexamethasone dose during CyBorD?
The dexamethasone can be hard handle. I had loss of sleep, emotional highs and lows, and hunger! Finally my doc reduced the dose to 40 mg every Saturday with the Revlimid for 21 days out of 28. Not much champagne in the side effects from the dex. Hang in there!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Dexamethasone dose during CyBorD?
Hey Colin!
I was on a weekly CyBorD plan for 16 weeks back in 2013 / 2014, which resulted in a stringent complete remission. The myeloma started to creep back this past December after nearly three years, so I'm doing the same 16 weeks of treatment right now.
Regarding the dex, I only get 20 mg a week, directly in the IV, since our insurance pays 100% as opposed to getting the pills and having a copay. Go figure!
But what I want to say is that every week, whatever nurse I have assumes I'm getting 40 mg of the dex, and I have to say, "No, only 20 mg." Then they lecture me that 40 is the standard, but then check with my doctor who confirms that I get 20 mg.
All that to say that 40 mg really is the usual dose for most of the myeloma world. I tell them with 40, my wife would have to muzzle me and put me in a cage because I'd be a raving lunatic!
It sounds like you're tolerating the dose pretty well. For me the insomnia is par for the course, so sometimes I just take an over the counter sleeping pill and that usually helps. A beer and a sleeping pill help even more
.
Anyway, if I were you, I wouldn't be overly concerned about the dex as long as everything is moving in the right direction. Blessings on your journey!
Paul
I was on a weekly CyBorD plan for 16 weeks back in 2013 / 2014, which resulted in a stringent complete remission. The myeloma started to creep back this past December after nearly three years, so I'm doing the same 16 weeks of treatment right now.
Regarding the dex, I only get 20 mg a week, directly in the IV, since our insurance pays 100% as opposed to getting the pills and having a copay. Go figure!
But what I want to say is that every week, whatever nurse I have assumes I'm getting 40 mg of the dex, and I have to say, "No, only 20 mg." Then they lecture me that 40 is the standard, but then check with my doctor who confirms that I get 20 mg.
All that to say that 40 mg really is the usual dose for most of the myeloma world. I tell them with 40, my wife would have to muzzle me and put me in a cage because I'd be a raving lunatic!
It sounds like you're tolerating the dose pretty well. For me the insomnia is par for the course, so sometimes I just take an over the counter sleeping pill and that usually helps. A beer and a sleeping pill help even more
. Anyway, if I were you, I wouldn't be overly concerned about the dex as long as everything is moving in the right direction. Blessings on your journey!
Paul
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Paul58 - Name: Paul J
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 54
Re: Dexamethasone dose during CyBorD?
My mom has been taking the standard dose of 40 mg during her induction phase. She has felt angry, hungry, and sleepless, but this would improve on her days off.
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dchrzano - Name: Ula
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: Dexamethasone dose during CyBorD?
Hi Colin,
I wanted to pass on to you what my husband figured out during his 16 week induction therapy concerning the dex. We initially thought, take the 40 mg as early in the day upon arising so that maybe he could sleep by night. It never worked. He would be able to sleep maybe 2 hours, and then be up the remaining of the night. He switched to taking it right before he went to bed and was able to sleep all night. Who would have thought? Wish he would have tried that sooner in the course of cycles. I know your question wasn't about sleep, but thought it might help if you are still on therapy.
My husband did CyBorD also. He had very good results. He is in the transplant phase now. He did stem cell collection on Monday (gave 18 million cells on 1st day! yay!) He will be admitted next week for the transplant. Wishing you great results!
I wanted to pass on to you what my husband figured out during his 16 week induction therapy concerning the dex. We initially thought, take the 40 mg as early in the day upon arising so that maybe he could sleep by night. It never worked. He would be able to sleep maybe 2 hours, and then be up the remaining of the night. He switched to taking it right before he went to bed and was able to sleep all night. Who would have thought? Wish he would have tried that sooner in the course of cycles. I know your question wasn't about sleep, but thought it might help if you are still on therapy.
My husband did CyBorD also. He had very good results. He is in the transplant phase now. He did stem cell collection on Monday (gave 18 million cells on 1st day! yay!) He will be admitted next week for the transplant. Wishing you great results!
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Lavonne_H - Name: Lavonne
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 11/2016
- Age at diagnosis: 60
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