Lizzy,
In the context of Dana's comments, you can view one doctor's history (and opinions) on this topic here (it's easier to understand than having to read through several heady studies):
https://www.youtube.com/watch?v=nP0pI2opicM
BTW, Dr. Comenzo does mention the PVX-410 vaccine trial for smolderers in the above youtube, which I forgot about. Since you mentioned you are in interested in immunotherapy options, this is one trial that you would potentially qualify for.
http://clinicaltrials.gov/show/NCT01718899
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
My husband was diagnosed in July. He started with treatment and it was relatively successful. In December, he had an Auto SCT. He is at Day 23 post transplant and doing very well. The story is still being written, but we claim healing and restoration.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Newly diagnosed, need treatment ... success stories?!
Wow ... I just want to say thank you for all of the amazing information. This is all so frightening and overwhelming, that I feel comforted by the genuine nature of this "community". I know none of us want to be here, but if we must be, it's certainly nice to be in the company of wonderful people. I am truly grateful for all of this information!! 
Re: Newly diagnosed, need treatment ... success stories?!
Multibilly,
Dr. Comenzo actually used my posted question on this site in his presentation. So good to know the specialists are taking notice of our very real concerns !
Dana
Dr. Comenzo actually used my posted question on this site in his presentation. So good to know the specialists are taking notice of our very real concerns !
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Newly diagnosed, need treatment ... success stories?!
Dana,
Like Andy Warhol said, we all get to be famous for 15 minutes in our lives. This must have been your moment
Like Andy Warhol said, we all get to be famous for 15 minutes in our lives. This must have been your moment
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
You can jump to the specific point in Dr. Comenzo's video where Dana's posting is mentioned by either manually going to the 6:51 mark in the video, or by clicking on this link (which, in most cases, should take you directly to the 6:51 mark):
http://www.youtube.com/watch?feature=player_detailpage&v=nP0pI2opicM#t=411
The discussion thread that Dr. Comenzo mentions in the video is this one (which Multibilly linked to earlier):
https://myelomabeacon.org/forum/would-you-consider-treatment-for-high-risk-smoldering-multiple-myeloma-t1711.html
http://www.youtube.com/watch?feature=player_detailpage&v=nP0pI2opicM#t=411
The discussion thread that Dr. Comenzo mentions in the video is this one (which Multibilly linked to earlier):
https://myelomabeacon.org/forum/would-you-consider-treatment-for-high-risk-smoldering-multiple-myeloma-t1711.html
Re: Newly diagnosed, need treatment ... success stories?!
Here is another video - Dr. Comenzo discussing similar topic "Smoldering Myeloma : Who and when to treat ? " but w/ some additional elements. He states it is a changing landscape and updated IMWG guidelines will be forthcoming. Love the Warhol quote Multibilly
http://www.youtube.com/watch?v=RYlBW-rl8U0
http://www.youtube.com/watch?v=RYlBW-rl8U0
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Newly diagnosed, need treatment ... success stories?!
Greetings from foggy Seattle Lizzie,
The conversation thread for your post is pretty accurate. In general it is not recommended to treat patients with smoldering myeloma unless they are part of a clinical trial. At the American Society for Hematology (ASH) meetings in New Orleans in December 2013, this topic was extensively explored.
Overall the worlds experts (all of whom were present at the meeting) were not recommending that oncologists start treating all of these patients. More research needs to be done. Having said that, it would not be "wrong" for an oncologist to recommend therapy. But there is no consensus in 2014 and without question we need to learn more.
The conversation thread for your post is pretty accurate. In general it is not recommended to treat patients with smoldering myeloma unless they are part of a clinical trial. At the American Society for Hematology (ASH) meetings in New Orleans in December 2013, this topic was extensively explored.
Overall the worlds experts (all of whom were present at the meeting) were not recommending that oncologists start treating all of these patients. More research needs to be done. Having said that, it would not be "wrong" for an oncologist to recommend therapy. But there is no consensus in 2014 and without question we need to learn more.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Newly diagnosed, need treatment ... success stories?!
Thank you Dr. Libby!
My oncologist wants to start me on Velcade-Revlimid-dex within the next week. Again, I have no symptoms specific to CRAB, but I have 60% monoclonal plasma infiltration and my K/L ratio is pretty high. I guess that's why we're starting. Is this fairly standard with no symptoms?
My oncologist wants to start me on Velcade-Revlimid-dex within the next week. Again, I have no symptoms specific to CRAB, but I have 60% monoclonal plasma infiltration and my K/L ratio is pretty high. I guess that's why we're starting. Is this fairly standard with no symptoms?
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Lizzie
Re: Newly diagnosed, need treatment ... success stories?!
Hi Lizzie,
Allow me to jump in and highlight a point that Dr Libby made regarding trials. You are technically smoldering and the current industry consensus is to watch and wait. This consensus and various working groups also drives insurance coverage policy. You definitely want to check with your insurance company to see if they will even cover any level of treatment for a smoldering patient, whether it be VRd or any other treatment.
The cost to cover these drugs on your own nickel would be astronomical (tens of thousands of $$/month). A trial may indeed be the only way that you could get the cost of your drugs covered as a smoldering patient.
On the subject of VRd, the fundamental question you need to ask is what will be your second and third steps of treatment down the line when you become refractory to these drugs? Is it better to go for a deep upfront response with a stronger cocktail of 3 drugs, or would you be better suited to start with Rd or Vd and then save the omitted Velcade of Revlimid (respectively) for a later date?
There is also the question that really isn't addressed in the current analyses of treating smoldering patients up front (at least I can't find the discussions anywhere). That is, what is the downside to starting your chemo clock ticking earlier if there is a likelihood of becoming R/R in a few years? The hope in treating smoldering patients up front is that it may prevent the transition to symptomatic myeloma, but that hasn't been proven to be the case as there is no long term data that exists yet for those smoldering patients that were treated early (folks like Dana are helping answer those questions). So, will you then potentially compromise your choice of drugs down the line if you start drug treatment early as a smolderer? These are not easy questions to answer.
There were some studies that were presented at ASH 2013 on the efficacy of using just Rd and Vd and you may want to look at these studies. They were done in the context of comparing drugs which we in the USA may consider to be obsolete (thalidomide, etc). You may ask why anyone would compare Rd or Vd to one the older regiments instead of analyzing Rd versus VRd or some other newer cocktail? You need to remember that many countries including those in Europe haven't approved many of the novel drugs that we take for granted here in the USA. So, these studies were crucial for those patients in these non-US countries that don't have access to many of these novel therapies and whose regulatory boards are grappling with whether or not to approve these newer drugs that we've had in place in the USA for several years now. The bottom line for you is that there is some good data on the PFS and OS of Vd and Rd that you can extract from these studies, even though you may not care about the drug cocktails they are comparing Vd and Rd against.
Allow me to jump in and highlight a point that Dr Libby made regarding trials. You are technically smoldering and the current industry consensus is to watch and wait. This consensus and various working groups also drives insurance coverage policy. You definitely want to check with your insurance company to see if they will even cover any level of treatment for a smoldering patient, whether it be VRd or any other treatment.
The cost to cover these drugs on your own nickel would be astronomical (tens of thousands of $$/month). A trial may indeed be the only way that you could get the cost of your drugs covered as a smoldering patient.
On the subject of VRd, the fundamental question you need to ask is what will be your second and third steps of treatment down the line when you become refractory to these drugs? Is it better to go for a deep upfront response with a stronger cocktail of 3 drugs, or would you be better suited to start with Rd or Vd and then save the omitted Velcade of Revlimid (respectively) for a later date?
There is also the question that really isn't addressed in the current analyses of treating smoldering patients up front (at least I can't find the discussions anywhere). That is, what is the downside to starting your chemo clock ticking earlier if there is a likelihood of becoming R/R in a few years? The hope in treating smoldering patients up front is that it may prevent the transition to symptomatic myeloma, but that hasn't been proven to be the case as there is no long term data that exists yet for those smoldering patients that were treated early (folks like Dana are helping answer those questions). So, will you then potentially compromise your choice of drugs down the line if you start drug treatment early as a smolderer? These are not easy questions to answer.
There were some studies that were presented at ASH 2013 on the efficacy of using just Rd and Vd and you may want to look at these studies. They were done in the context of comparing drugs which we in the USA may consider to be obsolete (thalidomide, etc). You may ask why anyone would compare Rd or Vd to one the older regiments instead of analyzing Rd versus VRd or some other newer cocktail? You need to remember that many countries including those in Europe haven't approved many of the novel drugs that we take for granted here in the USA. So, these studies were crucial for those patients in these non-US countries that don't have access to many of these novel therapies and whose regulatory boards are grappling with whether or not to approve these newer drugs that we've had in place in the USA for several years now. The bottom line for you is that there is some good data on the PFS and OS of Vd and Rd that you can extract from these studies, even though you may not care about the drug cocktails they are comparing Vd and Rd against.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
31 posts
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