I'm on chemo: the 21-day Velcade / Decadron (dexamethasone) cycle protocol, and I have a question:
My doses are the standard 1.3 mg/m2 (I think) of Velcade I get 2.8 mg... always the fastest out of the chemo room, aren't we!?
I also orally take Decadron at 20 mg 2x daily on days 1-4 & 9-12. I've been looking around and I haven't found that dosage of dex anywhere. It seems really really high to me. And it's hurting. I am having definite cognitive issues. Very definite muscle issues. Shaky. Moody. The dex crash is crazy when I come off.
What is typical? Any input appreciated. I am starting round 4 of chemo next week ... and I'd like to see the doctor with some info about this dosage.
Also, what does the dex actually do with the Velcade? Could I be looking at high-dose the days of and after (I understand the Velcade is 3/4 flushed in 48 hours), and low dose the other two days, or something like that?
Thanks, all.
Forums
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: How much dex?
Addendum: I understand that one of the reasons dex is given with Velcade is to help with the neuropathy, and that seems to have worked well. I have tingling in my hands and feet that's a bit variable as to intensity and how far up it extends (tho it's always there), and some minor vision issues (blurry, shakey ... and very dry eyes by late afternoon, usually), but other than that, the Velcade really hasn't lived up to it's negative potential.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: How much dex?
Hi Snip,
My partner also gets the Velcade / dex chemo 21 days, but only 20 mg on the Velcade day, and 20 mg the day after. He only has minimum problems with the dex, so is only a bit huffy on the dex days.
Regards from Germany,
Caro
My partner also gets the Velcade / dex chemo 21 days, but only 20 mg on the Velcade day, and 20 mg the day after. He only has minimum problems with the dex, so is only a bit huffy on the dex days.
Regards from Germany,
Caro
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: How much dex?
Hi Snip,
EJ as on the same protocol. After the first two rounds, EJ's doc lowered his dex to 40 mg once a week during the weeks he had treatment. Said he was having a good response, and they found they could still get a good response with a lower dose of dex.
Lyn
EJ as on the same protocol. After the first two rounds, EJ's doc lowered his dex to 40 mg once a week during the weeks he had treatment. Said he was having a good response, and they found they could still get a good response with a lower dose of dex.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: How much dex?
My hubby takes 20 mg of dex on the day of chemo (Velcade), which is once per week for 4 weeks. His dosage and frequency was reduced, from twice each week, because of severe neuropathy and kidney issues.
He has had 6 cycles and is in VGPR (very good partial response), without a stem cell transplant (SCT).
Every oncologist has a different plan, and every patient seems to react differently.
Sarah
He has had 6 cycles and is in VGPR (very good partial response), without a stem cell transplant (SCT).
Every oncologist has a different plan, and every patient seems to react differently.
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: How much dex?
Hi Snip,
Dexamethasone has anti-myeloma effect on its own. It may have protective effects for neuropathy, but the main reason it is used in myeloma is that it clearly kills myeloma cells even when used alone. When added to other drugs, there is a synergistic effect. Unfortunately the anti-myeloma effect (when used alone) of dex usually is brief.
The dosage and schedule of dexamethasone that you are receiving is what is called "pulse" dex. It was the favored way to give dex until a recent study showed a higher toxicity rate (including very serious infections) than in patients who took 40 milligrams of dex once weekly only. The response rates were similar whether the patient was on low dose dex or "pulse" dex.
Forty milligrams of dex for 4 days weekly is truly a tough therapy and without question causes mental, physical, infectious, and metabolic problems for many patients. In general, most centers now use the 40 mg once weekly schedule exclusively. Certainly, now that you have have had 3 cycles of high-dose dex, it would be very reasonable to decrease the dose.
Are you getting Velcade once weekly or twice weekly? Most centers have moved to the once weekly schedule using 1.5 mg/m2, and most centers are quickly moving to subcutaneous Velcade (less neuropathy when given subcutaneously).
Dexamethasone has anti-myeloma effect on its own. It may have protective effects for neuropathy, but the main reason it is used in myeloma is that it clearly kills myeloma cells even when used alone. When added to other drugs, there is a synergistic effect. Unfortunately the anti-myeloma effect (when used alone) of dex usually is brief.
The dosage and schedule of dexamethasone that you are receiving is what is called "pulse" dex. It was the favored way to give dex until a recent study showed a higher toxicity rate (including very serious infections) than in patients who took 40 milligrams of dex once weekly only. The response rates were similar whether the patient was on low dose dex or "pulse" dex.
Forty milligrams of dex for 4 days weekly is truly a tough therapy and without question causes mental, physical, infectious, and metabolic problems for many patients. In general, most centers now use the 40 mg once weekly schedule exclusively. Certainly, now that you have have had 3 cycles of high-dose dex, it would be very reasonable to decrease the dose.
Are you getting Velcade once weekly or twice weekly? Most centers have moved to the once weekly schedule using 1.5 mg/m2, and most centers are quickly moving to subcutaneous Velcade (less neuropathy when given subcutaneously).
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: How much dex?
It is really a sad state of affairs that we even have to ask this question. The answer is obvious ... the amount and frequency is different for everyone.
There are methods available for determining this individualized dosage for each person BEFORE they start treatment. However, they are not being used for a variety of reasons I have alluded to previously. Instead, the docs will continue to use us as guinea pigs, observing the efficacy and toxicities starting with a "standard" dose.
Unless patients unite against this archaic practice, I suspect there will be more "How much ..." topics which do not provide us with anything better than anecdotal advice.
Gary
There are methods available for determining this individualized dosage for each person BEFORE they start treatment. However, they are not being used for a variety of reasons I have alluded to previously. Instead, the docs will continue to use us as guinea pigs, observing the efficacy and toxicities starting with a "standard" dose.
Unless patients unite against this archaic practice, I suspect there will be more "How much ..." topics which do not provide us with anything better than anecdotal advice.
Gary
Re: How much dex?
Doctor Libby wrote:
I'm still on the days 1, 4, 9, and 13 of the 21-day cycle, with days 14-21 off. The dose is 1.3/m2 (I believe I am given 2.8 mg per session.) I asked about/for subq, but they have not worked out the protocol here in Ontario yet, so no dice on that. Sigh ... we may have 'free', but a lot of y'all have 'better', for sure.
Per the once weekly: so a slightly larger dose, once a week ... *every* week? That would work for me too, but I know they won't do that either.
Thanks for the reply, Doctor. It certainly confirms what I have been thinking (and obviously, feeling.) In any event, whatever the next round of chemo is 'supposed' to be (that is, whatever they assign), I won't be taking that much dex. That's for sure.
Are you getting Velcade once weekly or twice weekly? Most centers have moved to the once weekly schedule using 1.5 mg/m2, and most centers are quickly moving to subcutaneous Velcade (less neuropathy when given subcutaneously).
I'm still on the days 1, 4, 9, and 13 of the 21-day cycle, with days 14-21 off. The dose is 1.3/m2 (I believe I am given 2.8 mg per session.) I asked about/for subq, but they have not worked out the protocol here in Ontario yet, so no dice on that. Sigh ... we may have 'free', but a lot of y'all have 'better', for sure.
Per the once weekly: so a slightly larger dose, once a week ... *every* week? That would work for me too, but I know they won't do that either.
Thanks for the reply, Doctor. It certainly confirms what I have been thinking (and obviously, feeling.) In any event, whatever the next round of chemo is 'supposed' to be (that is, whatever they assign), I won't be taking that much dex. That's for sure.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: How much dex?
Dr. Edward Libby wrote:
[quoteThe dosage and schedule of dexamethasone that you are receiving is what is called "pulse" dex. It was the favored way to give dex until a recent study showed a higher toxicity rate (including very serious infections) than in patients who took 40 milligrams of dex once weekly only. The response rates were similar whether the patient was on low dose dex or "pulse" dex.[/quote]
Do you have a link to that/those studies?
[quoteThe dosage and schedule of dexamethasone that you are receiving is what is called "pulse" dex. It was the favored way to give dex until a recent study showed a higher toxicity rate (including very serious infections) than in patients who took 40 milligrams of dex once weekly only. The response rates were similar whether the patient was on low dose dex or "pulse" dex.[/quote]
Do you have a link to that/those studies?
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: How much dex?
Well, long story short. I wrote a letter to my doctor asking for a reduction. He wasn't there for our meet, and send a substitute onc who was familiar with my file. She strongly advised me to remain on the "pulse" dose (20 mg x 2 daily), telling me that in fact that amount of dex is actually doing 70% of the work killing cancer cells (I t thought the Velcade was doing that ... surprising info once again).
So, this week, anyhow, I did. And today is the last day, and I have only gotten minimally weaker (tho quite shakey), so I guess all good. And next week the chemo phase of my treatment plan comes to an end, so that's good news too. We get started on what seems like a very slow work-up to my ASCT (starts August 9, and the cells don't go back in, tentatively, till September 27).
Gotta stick with the doctors on this, right?
So, this week, anyhow, I did. And today is the last day, and I have only gotten minimally weaker (tho quite shakey), so I guess all good. And next week the chemo phase of my treatment plan comes to an end, so that's good news too. We get started on what seems like a very slow work-up to my ASCT (starts August 9, and the cells don't go back in, tentatively, till September 27).
Gotta stick with the doctors on this, right?
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
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