[Beacon Staff]

Weekly Poll - Revlimid Maintenance - How Long?

by Beacon Staff on Wed Jul 03, 2013 2:08 pm

Welcome to this week's Beacon Weekly Poll. This week’s question is about how long you have been on Revlimid maintenance therapy.

As usual, we have a few clarifications:

This question is only for myeloma patients who are currently receiving Revlimid (lenalidomide) maintenance therapy, with or without dexamethasone (Decadron).

Thus, you should not answer the question if you are on maintenance therapy involving additional anti-myeloma treatments beyond just Revlimid and dexamethasone -- for example, Velcade.

You may answer the question, however, if, in addition to maintenance therapy with Revlimid (with or without dexamethasone), you also are receiving a bisphosphonate such as Aredia (pamidronate) or Zometa (zoledronic acid).

Please note that maintenance therapy is defined as prolonged treatment following one or more initial, usually more intensive, treatment regimens. The goal of maintenance therapy is to prolong survival beyond what might be possible with just the initial therapy.

Once you have answered the question above, please feel free to add whatever comments you feel might be relevant in the discussion below.

Also, you may wish to review the results of these previous Weekly Polls, which also concern maintenance therapy:

Revlimid maintenance dose:
https://myelomabeacon.org/forum/weekly-poll-revlimid-maintenance-dose-t1401.html

Current maintenance treatment regimen:
https://myelomabeacon.org/forum/weekly-poll-current-maintenance-regimen-t1155.html

Quality of life during maintenance therapy:
https://myelomabeacon.org/forum/weekly-poll-qol-during-maintenance-vs-drug-free-periods-t1868.html

Length of Velcade maintenance therapy:
https://myelomabeacon.org/forum/weekly-poll-velcade-maintenance-how-long-t2056.html

Velcade maintenance therapy dose:
https://myelomabeacon.org/forum/weekly-poll-velcade-maintenance-dosing-schedule-t1531.html

[morrow1022]

Re: Weekly Poll - Revlimid Maintenance - How Long?

by morrow1022 on Mon Jul 08, 2013 2:46 pm

Was on Revlimid and dex and Velcade for 6 months. They stop everything to get me ready for stem cell harvest. Harvest was done in April after a dose of cytoxin. In May my numbers had gone up from 49 (,in Dec) to 129. So was put back on Revlimid 25mg. In June numbers only went down to 125 so was put back on steroids 40mg a week. Hopefully numbers will go down enough that they won't start me on Velcade again.

[Mary Degenkolb]

Re: Weekly Poll - Revlimid Maintenance - How Long?

by Mary Degenkolb on Mon Jul 08, 2013 3:47 pm

I am still fighting the rash and skin issues I developed due to the Revlimid. I just about get the rash cleared up and healed, then I have to restart the Revlimid again (21 days on and 7 days off). Is there anyone else who is dealing with this rash behind your ears where the ear meets the head? I am exhausted with this side effect, and my onocologist told me he does not do rashes! Oh well!

[carolynah618]

Re: Weekly Poll - Revlimid Maintenance - How Long?

by carolynah618 on Mon Jul 08, 2013 3:59 pm

I have been on Revlimid for 4 years, 4 months. Started at 25, lowered to 15, then 10, now 5...still causes rash, but surprised that my platelets drop 50 to 60 points the 7 days I am off of it on a 28 day cycle

[morrow1022]

Re: Weekly Poll - Revlimid Maintenance - How Long?

by morrow1022 on Tue Jul 09, 2013 4:18 pm

Never got a rash from Remlivid . But had horrid rash on stomach with the first month of Valcaid.

[Jack]

Re: Weekly Poll - Revlimid Maintenance - How Long?

by Jack on Thu Jul 11, 2013 1:03 pm

I have been on Rev/Dex maintenance therapy twice...once for about 8 months and the second time for two months. I experienced no rash, just extreme fatigue, lack of energy and bit more chemo brain. Stopped the first time as my doctor just wanted to give me a break as my light chain number was in the mid 30s (I have no M spike). The second time I stopped, which was just this month, my light chain number again dropped after only two months from about 150 back down to the 37. However, in this second round, as well as at the end of the first round, my oncologist added Cytoxan as rev'dex along had stopped working...the addition of Cytoxan made the difference in this therapy. I have previously been on thalidomide/dex and two rounds of Velcade. I was first diagnosed in November 2005.