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Pomalyst after Revlimid maintenance: what to expect?

by Ruchi on Tue Jun 26, 2018 5:16 pm

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

Ruchi

Re: Pomalyst after Revlimid maintenance: what to expect?

by Ruchi on Wed Sep 05, 2018 1:49 pm

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.

Ruchi

Re: Pomalyst after Revlimid maintenance: what to expect?

by Arizonan on Wed Sep 05, 2018 11:27 pm

Sorry to hear the pomalidomide (Pomalyst, Imnovid) didn’t work. Let’s hope the next drug option does work.

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?

by Ruchi on Thu Sep 06, 2018 9:55 am

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.

Ruchi

Re: Pomalyst after Revlimid maintenance: what to expect?

by borntorun on Thu Sep 06, 2018 11:17 am

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.

borntorun

Re: Pomalyst after Revlimid maintenance: what to expect?

by Ruchi on Sat Sep 08, 2018 11:16 pm

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

Ruchi

Re: Pomalyst after Revlimid maintenance: what to expect?

by borntorun on Sun Sep 09, 2018 8:48 am

For me, the markers starting improving, slowly, during my first 21-day cycle. Keep in mind, though, that no two patients are the same.

borntorun


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