Hi All,
My mother will be starting 2 mg Pomalyst (pomalidomide) from tomorrow for 21 days along with Velcade and 40 mg dex at the start of the cycle. She has been on Revlimid maintenance since 2012.
I have read here on the forum that people who are already treated with Revlimid for a long time, are less likely to respond to Pomalyst. Is that generally true? Is it possible that Pomalyst can still work even if someone has been on Revlimid maintenance for a long time?
Thanks,
Ruchi
Forums
Re: Pomalyst after Revlimid maintenance: what to expect?
Just an update:
Mother has been on Pomalyst since June for 3 weeks on and one week off. In between when her WBC counts went really low, the doctor stopped Pomalyst for a couple of days. She took Velcade at the start of the cycle along with 20 mg dexamethasone for 3 days. She had her ratio tested this week and her kappa value rose to 1000 mg/L and lambda was at 18.54 mg/L. So her ratio increased from 18 (last measured in June) to 56.28. So I think in her case too, Pomalyst doesn't seem to work.
Today she also started complaining of back ache / back muscle tightness. We are not sure if this is due to the Pomalyst. She will be meeting with her hematologist this week.
Mother has been on Pomalyst since June for 3 weeks on and one week off. In between when her WBC counts went really low, the doctor stopped Pomalyst for a couple of days. She took Velcade at the start of the cycle along with 20 mg dexamethasone for 3 days. She had her ratio tested this week and her kappa value rose to 1000 mg/L and lambda was at 18.54 mg/L. So her ratio increased from 18 (last measured in June) to 56.28. So I think in her case too, Pomalyst doesn't seem to work.
Today she also started complaining of back ache / back muscle tightness. We are not sure if this is due to the Pomalyst. She will be meeting with her hematologist this week.
Re: Pomalyst after Revlimid maintenance: what to expect?
Sorry to hear the pomalidomide (Pomalyst, Imnovid) didn’t work. Let’s hope the next drug option does work.
Good luck to her.
David
Good luck to her.
David
-

Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Pomalyst after Revlimid maintenance: what to expect?
She met with her hematologist today. He put her on weekly Velcade along with 40 mg dexamethasone and 5 mg Revlimid.
As far as the backache goes, he thinks it might be one of the withdrawal symptoms from Pomalyst, as currently she was on her off week from the drug.
As far as the backache goes, he thinks it might be one of the withdrawal symptoms from Pomalyst, as currently she was on her off week from the drug.
Re: Pomalyst after Revlimid maintenance: what to expect?
I was on Revlimid maintenance for 5 years. No dexamethasone, just Revlimid 2.5 mg. Switched to Pomalyst, no dexamethasone, one year ago after my M-spike and kappa/lambda ratio started going up. The Pomalyst brought them back to normal. Faint M-spike. Started at 4 mg Pomalyst, lowered to 3 mg after dangerously low WBC. All is good for the moment. WBC back to acceptable number. Ratio and M-spike in check and stable. Minor side effects. Some fatigue at times and occasional muscle cramps.
The myeloma specialist I see anticipates the Pomalyst working for another year and a half or so. The rule of thumb seems to be that the second remission will be half as long as the first.
The myeloma specialist I see anticipates the Pomalyst working for another year and a half or so. The rule of thumb seems to be that the second remission will be half as long as the first.
Re: Pomalyst after Revlimid maintenance: what to expect?
Borntorun,
Do you know how long it takes for Pomalyst to bring myeloma markers back to normal? I was just wondering if the two-month duration that my mother was on the drug wasn't enough for it to kick in and there might be a possibility for the ratio to go down if she took it for some more time.
Thanks,
Ruchi
Do you know how long it takes for Pomalyst to bring myeloma markers back to normal? I was just wondering if the two-month duration that my mother was on the drug wasn't enough for it to kick in and there might be a possibility for the ratio to go down if she took it for some more time.
Thanks,
Ruchi
Re: Pomalyst after Revlimid maintenance: what to expect?
For me, the markers starting improving, slowly, during my first 21-day cycle. Keep in mind, though, that no two patients are the same.
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