If you reached CR or stringent CR with RVD [Revlimid + Velcade + dexamethasone] and no transplant, what was your maintenance strategy?
My mom's nurse mentioned she would "indefinitely" be on 25 mg of Revlimid and 1 shot of Velcade 1.0 mg each week. This just seems ridiculous to us -- especially when my mom spends most of her time in bed exhausted from the treatment. What kind of life would that be?
Forums
7 posts
• Page 1 of 1
Re: Maintenance therapy after remission with RVD
This is a copy of a post I made on Velcade Maintenance that appears applicable.
Re: Velcade or Revlimid maintenance therapy?
by Ron Harvot on Sat Aug 02, 2014 10:10 pm
I have been on maintenance with Velcade for nearly 5 years. For the past two it has been a shot once every 2 weeks accompanied by 8 mg of dex. I continue to be in a remissive state.
I should add that I have not had an ASCT.
I reached a CR with VRD [Velcade, Revlimid, dex] which I took for about 10 cycles (initially weekly injections of Velcade accompanied with 40 mg of dex, 10 mg of Revlimid - on 21 days off 7.) The Velcade was then changed to subcutaneous and changed to once every 2 weeks. The dex was gradually backed down from 40 to 20 to 16 and then 8. Revlimid was dropped 2 years ago."
Ron
Re: Velcade or Revlimid maintenance therapy?
by Ron Harvot on Sat Aug 02, 2014 10:10 pm
I have been on maintenance with Velcade for nearly 5 years. For the past two it has been a shot once every 2 weeks accompanied by 8 mg of dex. I continue to be in a remissive state.
I should add that I have not had an ASCT.
I reached a CR with VRD [Velcade, Revlimid, dex] which I took for about 10 cycles (initially weekly injections of Velcade accompanied with 40 mg of dex, 10 mg of Revlimid - on 21 days off 7.) The Velcade was then changed to subcutaneous and changed to once every 2 weeks. The dex was gradually backed down from 40 to 20 to 16 and then 8. Revlimid was dropped 2 years ago."
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Maintenance therapy after remission with RVD
Hopeful,
Ron's suggestion is a good one.
Also, as you read through studies on maintenance, you will find more and more references to to lower dose Revlimid in the various trials that are being conducted. 25mg of Revlimid is quite a big dose and is not considered to be a "low dose". You will also find patients on this site and in various studies and/or on this site taking 15, 10 and 5mg of Revlimid for maintenance, with no Velcade. I would also consider looking at just low-dose subcutaneous Velcade as an alternative (my family has a pretty rich history of cancer and there is a decent chance that I also have the BRCA-2 gene, so long term Revlimid use concerns me).
Of course, the dose and the combo of maintenance drugs depends on your Mom's situation and circumstances, but dialing down the dose and or reducing the treatment to one drug would be something I would discuss with the doc. If the doc is unwilling to consider it, you may want to also seek a second opinion.
Ron's suggestion is a good one.
Also, as you read through studies on maintenance, you will find more and more references to to lower dose Revlimid in the various trials that are being conducted. 25mg of Revlimid is quite a big dose and is not considered to be a "low dose". You will also find patients on this site and in various studies and/or on this site taking 15, 10 and 5mg of Revlimid for maintenance, with no Velcade. I would also consider looking at just low-dose subcutaneous Velcade as an alternative (my family has a pretty rich history of cancer and there is a decent chance that I also have the BRCA-2 gene, so long term Revlimid use concerns me).
Of course, the dose and the combo of maintenance drugs depends on your Mom's situation and circumstances, but dialing down the dose and or reducing the treatment to one drug would be something I would discuss with the doc. If the doc is unwilling to consider it, you may want to also seek a second opinion.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Maintenance therapy after remission with RVD
Hi everyone,
I'm not trying to hijack this tread, but I have a question for Ron if ya'll won't mind.
My question is how and why did you decide to go with Velcade instead of Revlimid?
Also are you gonna do this maintenance forever or is there a stop date?
marvin
I'm not trying to hijack this tread, but I have a question for Ron if ya'll won't mind.
My question is how and why did you decide to go with Velcade instead of Revlimid?
Also are you gonna do this maintenance forever or is there a stop date?
marvin
-
gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Maintenance therapy after remission with RVD
Marvin,
My original maintenance was just a gradual back down of the RVD, extending the cycles of Velcade from once a week to once every two weeks and backing down the dex as described. I was getting infections and came down with meningitis in July 2012. My oncologist initially stopped the Revlimid temporarily because it was impacting my white cell count. My tests showed that my remission was holding without the Revlimid so it was never reintroduced.
I am going in for aortic valve replacement surgery on August 19 and will be taking a holiday from all chemo for a while until I recover. It will be interesting to see if my numbers hold.
I lobbied for the reduction in the dex. Velcade does not seem to give me any side effects and a shot once every 2 weeks in my abdomen is not inconvenient. Dex, however, does appear to have a symbiotic relationship with Velcade and they work well in tandem. So although it has been reduced it has not been eliminated.
My experience with the maintenance has been trial and error - keep backing off / tweak the meds until you reach a proper level, which may vary patient to patient.
Ron
My original maintenance was just a gradual back down of the RVD, extending the cycles of Velcade from once a week to once every two weeks and backing down the dex as described. I was getting infections and came down with meningitis in July 2012. My oncologist initially stopped the Revlimid temporarily because it was impacting my white cell count. My tests showed that my remission was holding without the Revlimid so it was never reintroduced.
I am going in for aortic valve replacement surgery on August 19 and will be taking a holiday from all chemo for a while until I recover. It will be interesting to see if my numbers hold.
I lobbied for the reduction in the dex. Velcade does not seem to give me any side effects and a shot once every 2 weeks in my abdomen is not inconvenient. Dex, however, does appear to have a symbiotic relationship with Velcade and they work well in tandem. So although it has been reduced it has not been eliminated.
My experience with the maintenance has been trial and error - keep backing off / tweak the meds until you reach a proper level, which may vary patient to patient.
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Maintenance therapy after remission with RVD
And not to hijack the thread either, but good luck to you, Ron, with the aortic valve replacement surgery. My brother had that same surgery a couple of years ago, and it went well for him.
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance therapy after remission with RVD
Good luck, Ron. Knowing you it will be no time until you are back on your bike again!
-
Mark11
7 posts
• Page 1 of 1
Return to Treatments & Side Effects