I started with RVD has my induction therapy. After the second round we dropped the dex as I was having miserable side effects. In August 2011 I went through an autologous SCT. Since then I have been on a maintenance dose of 10 mg of Revlimid with no Velcade or dex. I have been in a complete remission.
There is another possible explanation to what Mikeb describes. I had the same symptoms as he describes a day or so after stopping a round of dex. My body was going through withdrawal. My understanding is that when you get the steroids from an external source, the adrenal gland gets the message that the endocrine system does not need to produce any. When the dex stops, the adrenal gland in my case, and perhaps with others, does not get kick started.
If withdrawal is the problem then it would make sense that the problem would disappear once the drug is given again. Once we made, the connection my oncologist slowly weaned me off steroids. Can't say I miss them!
Best of luck to everyone on this forum,
Tom
Forums
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Maintenance with Revlimid & Velcade but no steriods
I had a bad time with both dexamethasone and Velcade. Doc put me on regimen of simply 25 mg Revlimid. That got me into remission. I'm still on 25 mg of Revlimid alone for maintenance.
Best of Luck and Health,
Rob
Ace of Baseness
Best of Luck and Health,
Rob
Ace of Baseness
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Acebass
Re: Maintenance with Revlimid & Velcade but no steriods
The most important, practice-changing clinical trials to assess maintenance therapy are randomized, phase 3 studies. Several randomized trials of thalidomide maintenance after autologous transplant have been published (Attal 2006, Barlogie 2006, Spencer 2009). In the Attal and Barlogie trials, maintenance involved thalidomide alone. In the Spencer trial, prednisone maintenance was compared to thalidomide plus prednisone. In each of the studies, there was benefit to the inclusion of thalidomide as maintenance, although the side effects of this agent make it challenging as a long-term maintenance agent.
Several randomized trials of lenalidomide (Revlimid) maintenance have been published (McCarthy 2012, Attal 2012, Palumbo 2012). The McCarthy and Attal trials compared lenalidomide to placebo in patients who had undergone autologous transplant. The Palumbo trial involved transplant-ineligible patients and compared melphalan and prednisone to mel-pred plus rev for a defined period of nine cycles to mel-pred plus rev for nine cycles followed by lenalidomide maintenance. The incorporation of lenalidomide maintenance was associated with a benefit in progression free survival in each of the three studies. The McCarthy study demonstrated a survival benefit while the other two have not.
There are several clinical trials that have incorporated bortezomib (Velcade) as maintenance, perhaps most notably Sonneveld 2012 and Mateos 2012, but no randomzied trials. In addition, there are a number of ongoing studies that incorporate post-transplant therapy with two or even three drugs, but again these are not randomized trials.
Given these data, there a numerous possible approaches to therapy that is given following induction in transplant-ineligible patients and following autologous transplant in transplant-eligible patients. It's important to speak with your physician about the rationale for whatever approach is taken in your care, and to understand the potential risks and benefits.
Several randomized trials of lenalidomide (Revlimid) maintenance have been published (McCarthy 2012, Attal 2012, Palumbo 2012). The McCarthy and Attal trials compared lenalidomide to placebo in patients who had undergone autologous transplant. The Palumbo trial involved transplant-ineligible patients and compared melphalan and prednisone to mel-pred plus rev for a defined period of nine cycles to mel-pred plus rev for nine cycles followed by lenalidomide maintenance. The incorporation of lenalidomide maintenance was associated with a benefit in progression free survival in each of the three studies. The McCarthy study demonstrated a survival benefit while the other two have not.
There are several clinical trials that have incorporated bortezomib (Velcade) as maintenance, perhaps most notably Sonneveld 2012 and Mateos 2012, but no randomzied trials. In addition, there are a number of ongoing studies that incorporate post-transplant therapy with two or even three drugs, but again these are not randomized trials.
Given these data, there a numerous possible approaches to therapy that is given following induction in transplant-ineligible patients and following autologous transplant in transplant-eligible patients. It's important to speak with your physician about the rationale for whatever approach is taken in your care, and to understand the potential risks and benefits.
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Dr. Jacob Laubach - Name: Jacob Laubach, M.D., M.P.P.
Beacon Medical Advisor
Re: Maintenance with Revlimid & Velcade but no steriods
Tom184, thanks for the possible explanation for what I experienced that one time I forgot to take the dex before getting the Velcade.
I got Velcade sub q injections on days 1 & 4 and took 10 mg of dex on days 1,2,4,5 of the week. I regularly experienced the dex withdrawal that you described on days 3 and 6. What I experienced that one day I forgot to take the dex before getting the Velcade was sort of like the days 2 & 6 withdrawal on steroids (sorry for the pun).
So I think there may be something to your explanation, but I also think in my case there was something about the dex that mitigated the worst immediate side effects of the Velcade. So when I didn't have the dex, I experienced those side effects.
I got Velcade sub q injections on days 1 & 4 and took 10 mg of dex on days 1,2,4,5 of the week. I regularly experienced the dex withdrawal that you described on days 3 and 6. What I experienced that one day I forgot to take the dex before getting the Velcade was sort of like the days 2 & 6 withdrawal on steroids (sorry for the pun).
So I think there may be something to your explanation, but I also think in my case there was something about the dex that mitigated the worst immediate side effects of the Velcade. So when I didn't have the dex, I experienced those side effects.
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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 with Revlimid & Velcade but no steriods
Hi
I have just taken 5 doses of 5 mg Revlimid, no dex. My haematologist wanted me to start with 10 mg. I didn't want any as the consultant said after my ASCT that, as I had experienced such extreme peripheral neuropathy before with Velcade and dex, that maybe I should try interferon. The hospital to which I have returned does not have to take his recommendation though, and she will not.
I am stopping this now as it is coming back, it has never gone completely, and I am still on 6 tablets a day of Lyrica. I do not intend to go back in the wheelchair yet, I could not walk across the room for 3 months after taking the Velcade and dex.
I have no idea what dex does except puff you up as it is a steroid and I don't know why it is given.
No one has mentioned the possibility of secondary cancers with Revlimid, or should we not worry about that?
This probably is of no help but I welcome any feed back,
I have just taken 5 doses of 5 mg Revlimid, no dex. My haematologist wanted me to start with 10 mg. I didn't want any as the consultant said after my ASCT that, as I had experienced such extreme peripheral neuropathy before with Velcade and dex, that maybe I should try interferon. The hospital to which I have returned does not have to take his recommendation though, and she will not.
I am stopping this now as it is coming back, it has never gone completely, and I am still on 6 tablets a day of Lyrica. I do not intend to go back in the wheelchair yet, I could not walk across the room for 3 months after taking the Velcade and dex.
I have no idea what dex does except puff you up as it is a steroid and I don't know why it is given.
No one has mentioned the possibility of secondary cancers with Revlimid, or should we not worry about that?
This probably is of no help but I welcome any feed back,
Re: Maintenance with Revlimid & Velcade but no steriods
Millie,
First I'm a little unclear about exactly what you are currently on, what your hematologist is recommending, what your consultant is recommending and what the hospital you went to wants you to do. You might try restating your comment to make things a bit more clear for everyone.
Steroids like dexamethasone and prednisone are quite important for the treatment of multiple myeloma. Used only by themselves, they actually can kill multiple myeloma cells. They also have important synergistic effects with many of the standard multiple myeloma drugs that are used today, including Velcade and Revlimid. Now, having said that, steroids are not always prescribed for use with other drugs for ongoing maintenance, but they are typically used for induction and consolidation therapy. This is partly due to the fact that long term use of steroids can have significant side effects (more than just becoming puffy).
The issue of secondary cancer from the long term use of Revlimid is a realistic concern and should be taken into consideration when you discuss a maintenance approach with your doctors. You need to weigh the benefits of using Revlimid to extend progression-free survival (PFS) and overall survival (OS) versus its secondary cancer risk, while taking into account the overall best drug approach for your particular circumstances (which only a multiple myeloma specialist can truly evaluate).
Did you develop peripheral neuropathy (PN) as a result of IV infusions of Velcade or were you taking subcutaneous shots of Velcade? (The latter is much better for helping reduce the chances of PN, so you may want to explore this if your were given Velcade via an IV). I am going to guess that since you used the word "consultant" in your reply that you are in Europe? Otherwise, I might also suggest looking into carfilzomib (Kyprolis) as a maintenance choice ... but I don't think that is an option for patients in most European countries right now (I may be wrong about this?)
Lastly, interferon as currently administered to multiple myeloma patients, doesn't have a very great track record. As I recall, it hasn't demonstrated very compelling results and it can cause a lot of side effects. I'm therefore a bit surprised to hear that this was offered up as a drug strategy for you.
In any case, a multiple myeloma specialist is really the best person to help guide you through all this.
First I'm a little unclear about exactly what you are currently on, what your hematologist is recommending, what your consultant is recommending and what the hospital you went to wants you to do. You might try restating your comment to make things a bit more clear for everyone.
Steroids like dexamethasone and prednisone are quite important for the treatment of multiple myeloma. Used only by themselves, they actually can kill multiple myeloma cells. They also have important synergistic effects with many of the standard multiple myeloma drugs that are used today, including Velcade and Revlimid. Now, having said that, steroids are not always prescribed for use with other drugs for ongoing maintenance, but they are typically used for induction and consolidation therapy. This is partly due to the fact that long term use of steroids can have significant side effects (more than just becoming puffy).
The issue of secondary cancer from the long term use of Revlimid is a realistic concern and should be taken into consideration when you discuss a maintenance approach with your doctors. You need to weigh the benefits of using Revlimid to extend progression-free survival (PFS) and overall survival (OS) versus its secondary cancer risk, while taking into account the overall best drug approach for your particular circumstances (which only a multiple myeloma specialist can truly evaluate).
Did you develop peripheral neuropathy (PN) as a result of IV infusions of Velcade or were you taking subcutaneous shots of Velcade? (The latter is much better for helping reduce the chances of PN, so you may want to explore this if your were given Velcade via an IV). I am going to guess that since you used the word "consultant" in your reply that you are in Europe? Otherwise, I might also suggest looking into carfilzomib (Kyprolis) as a maintenance choice ... but I don't think that is an option for patients in most European countries right now (I may be wrong about this?)
Lastly, interferon as currently administered to multiple myeloma patients, doesn't have a very great track record. As I recall, it hasn't demonstrated very compelling results and it can cause a lot of side effects. I'm therefore a bit surprised to hear that this was offered up as a drug strategy for you.
In any case, a multiple myeloma specialist is really the best person to help guide you through all this.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Maintenance with Revlimid & Velcade but no steriods
ACEbass;
What I wanna know is,..."How long has this been going on,...How long..."
"Do I ask your friends with the fancy persuasion ? "
BTW--the best opening Bass riff ever,..in "How Long".
Be well.
What I wanna know is,..."How long has this been going on,...How long..."
"Do I ask your friends with the fancy persuasion ? "
BTW--the best opening Bass riff ever,..in "How Long".
Be well.
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Rneb
Re: Maintenance with Revlimid & Velcade but no steriods
Hi Daniel,
Do you have a link for this "virtually unknown study from Europe that my oncologist at COH knew about (specifically relative to 17P deletion myeloma)" that you refer to?
It would be interesting to see.
I know this discussion is 6 months old.
Thanks, Ping
Do you have a link for this "virtually unknown study from Europe that my oncologist at COH knew about (specifically relative to 17P deletion myeloma)" that you refer to?
It would be interesting to see.
I know this discussion is 6 months old.
Thanks, Ping
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ping - Name: ping
- When were you/they diagnosed?: December, 2014
- Age at diagnosis: 54
Re: Maintenance with Revlimid & Velcade but no steriods
Hello Ping,
The study Daniel referred to may be this German one from 2012:
K Neben et al, "Administration of bortezomib before and after autologous stem cell transplantation improves outcome in multiple myeloma patients with deletion 17p", Blood 2012 (full text)
It's discussed in this article here at the Beacon:
"Velcade-Based Therapy May Improve Survival Of Multiple Myeloma Patients With Deletion In chromosome 17," The Myeloma Beacon, Feb 24, 2012.
The study Daniel referred to may be this German one from 2012:
K Neben et al, "Administration of bortezomib before and after autologous stem cell transplantation improves outcome in multiple myeloma patients with deletion 17p", Blood 2012 (full text)
It's discussed in this article here at the Beacon:
"Velcade-Based Therapy May Improve Survival Of Multiple Myeloma Patients With Deletion In chromosome 17," The Myeloma Beacon, Feb 24, 2012.
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JimNY
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