My "hometown" hematologist/oncologist told me I was not high risk smoldering myeloma, but he recommended another opinion.
I just got back from seeing a myeloma specialist at the University of Maryland, and he said I am definitely high-risk based on 1) my high K light chain and K/L ratio, 2) I am type IgA, with suppressed IgG and IgM, 3) I have what is believed to be a small plasmacytoma in my c-spine and 4) I am having issues with numbness in my hands while I sleep.
He did more blood work to rule out POEMS and amyloidosis (which he doesn't think I have). He is certain I will progress to active myeloma within 2 years and mentioned stem cell transplant in my future.
I am planning on going to Johns Hopkins and maybe the University of Pennsylvania.
For those of you with high-risk smoldering myeloma, could you please share your experiences? This is very scary!
Forums
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High-risk smoldering myeloma - experiences / opinions?
Hi gardengirl! It's interesting that I ran across your post as I just met with a new specialist today and he classifies me as "high risk smoldering". My oncologist wants me to begin therapy immediately - VRD [Velcade, Revlimid, dexamethasone]; whereas there is some thought that I can wait.
There are a lot of variables though. For instance, my plasma cell infiltration is 60%, i have elevated K/L ratio and I have some chromosomal mutations. I, however, have NO CRAB criteria Clearly my disease is progressing but without symptoms they don't know "at what point" it would progress to active, symptomatic multiple myeloma. Feel free to PM me if you want to discuss more.
Don't stress too, too much though. I know that sounds like an understatement and this is all very scary, but I've read/heard some very promising things out there. Many people are beating this and "statistically" you and I can't base anything on the numbers we see on the internet (as we don't fit the "profile" of an average multiple myeloma patient) ... I tell everyone that "Dr Google is very, very evil!"
There are a lot of variables though. For instance, my plasma cell infiltration is 60%, i have elevated K/L ratio and I have some chromosomal mutations. I, however, have NO CRAB criteria Clearly my disease is progressing but without symptoms they don't know "at what point" it would progress to active, symptomatic multiple myeloma. Feel free to PM me if you want to discuss more.
Don't stress too, too much though. I know that sounds like an understatement and this is all very scary, but I've read/heard some very promising things out there. Many people are beating this and "statistically" you and I can't base anything on the numbers we see on the internet (as we don't fit the "profile" of an average multiple myeloma patient) ... I tell everyone that "Dr Google is very, very evil!"
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High-risk smoldering myeloma - experiences / opinions?
Lizzie,
As I recall, you have a +1q mutation. Since you mentioned VRD, please see my earlier post on your thread re a recent caution about using Velcade on 1q21 patients. Not sure if your onc was aware of this study.
As I recall, you have a +1q mutation. Since you mentioned VRD, please see my earlier post on your thread re a recent caution about using Velcade on 1q21 patients. Not sure if your onc was aware of this study.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk smoldering myeloma - experiences / opinions?
Hi Multibilly! As always, thanks for the info. I did see this study and brought it up to the Oncologist I saw today. He didn't seem to give it much merit because it was conducted in China and I guess he questioned the methodology!? Additionally, it didn't seem to align with his own clinical experience with patients he's seen with this mutation. What do you think?
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High-risk smoldering myeloma - experiences / opinions?
Lizzie,
I think it is easy for some folks to say "it was done in China, so is it credible?". Having traveled throughout China over the past several years and as recently as year ago, I would say their state of medicine and technology is on par with the USA (every time I go there, I am blown away at how fast that country has developed in the past decade). So, I wouldn't simply discount the study based on where it came from.
Now, whether the study was good science or not? I'm not qualified to answer that and it very well may be junk science...but I wouldn't say that just because of the study's origin.
Regardless, I guess the study would concern me enough that I would seek a second opinion.
In any case, how are you going to overcome the issue with insurance of starting any sort of treatment as a technically smoldering patient? Correct me if I'm wrong, but I think your only options for covered treatment would be in a trial unless your insurance grants an exception.
The active smoldering drug trial combos are a number of new monoclonal antibodies (exciting stuff), Rev by itself, Kyprolis + Rev + Dex, and MLN9708 (a new oral proteasome inhibitor under development) + Dex, (curiously no trials with Velcade). I might be missing one or two, so you should scan all the smoldering trials yourself.
Also, be aware that these trials are notorious for not updating their status on the web in a timely manner. So don't get too excited about one until you verify its status. Also check around other sites, but here is one site you can start with.
http://www.clinicaltrials.gov/ct2/results?term=high+risk+smoldering&recr=Open
I think it is easy for some folks to say "it was done in China, so is it credible?". Having traveled throughout China over the past several years and as recently as year ago, I would say their state of medicine and technology is on par with the USA (every time I go there, I am blown away at how fast that country has developed in the past decade). So, I wouldn't simply discount the study based on where it came from.
Now, whether the study was good science or not? I'm not qualified to answer that and it very well may be junk science...but I wouldn't say that just because of the study's origin.
Regardless, I guess the study would concern me enough that I would seek a second opinion.
In any case, how are you going to overcome the issue with insurance of starting any sort of treatment as a technically smoldering patient? Correct me if I'm wrong, but I think your only options for covered treatment would be in a trial unless your insurance grants an exception.
The active smoldering drug trial combos are a number of new monoclonal antibodies (exciting stuff), Rev by itself, Kyprolis + Rev + Dex, and MLN9708 (a new oral proteasome inhibitor under development) + Dex, (curiously no trials with Velcade). I might be missing one or two, so you should scan all the smoldering trials yourself.
Also, be aware that these trials are notorious for not updating their status on the web in a timely manner. So don't get too excited about one until you verify its status. Also check around other sites, but here is one site you can start with.
http://www.clinicaltrials.gov/ct2/results?term=high+risk+smoldering&recr=Open
Last edited by Multibilly on Tue Feb 04, 2014 9:36 pm, edited 2 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk smoldering myeloma - experiences / opinions?
Multibilly, your knowledge amazes me! I wish I had to time to learn what you know! Well, I guess I need to make time now! The doc today did tell me I cannot have a SCT at U of M because my insurance is contracted with Hopkins. Will need to look into coverage for smoldering myeloma treatments that are not clinical trials.
Lizzie, I will PM you ... glad I found someone on the same track!
Lizzie, I will PM you ... glad I found someone on the same track!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High-risk smoldering myeloma - experiences / opinions?
I am in a similar situation with possible high-risk SMM and deciding on treatment options.
Am not sure if I am setting a record for multiple opinions, but after 4 general heme/oncologists, and 3 myeloma experts, I am going for my 4th (and hopefully last) consult for a "tie-breaker"!
All this leads me to believe that the current state of science for SMM is not that clear, so we smolderers should try to stay current with the literature, but above all, stay POSITIVE!
Am not sure if I am setting a record for multiple opinions, but after 4 general heme/oncologists, and 3 myeloma experts, I am going for my 4th (and hopefully last) consult for a "tie-breaker"!
All this leads me to believe that the current state of science for SMM is not that clear, so we smolderers should try to stay current with the literature, but above all, stay POSITIVE!
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: High-risk smoldering myeloma - experiences / opinions?
Blee and gardengirl...... Would you mind sharing "why" considered high risk? Have you had FISH test? I'm simply asking because I too am gathering opinions and I think it would be great to share what we're hearing. This disease is so individualized and every patient is different. I'm just curious as to the sense of urgency that you might be hearing...... And I'm assuming much of this will be based on why you're considered high risk. Sending positive vibes ..... 
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High-risk smoldering myeloma - experiences / opinions?
Certainly! The specialist I just saw really scared me! He thinks I am high risk because my K/L ratio is very high (400), I am type IgA (harder to treat) with suppressed IgG and IgM, I have a small plasmacytoma in C7 and I am experiencing tingling in my hands and arms. He is certain I will progress within 2 years. As of now it is recommended that high-risk SMM should not be treated outside of a clinical trial, so he is trying to get me in a study at NIH. What freaked me out the most was that he wants to harvest my stem cells for a future transplant! (I was reeling with emotions since I have 2 tweens to think about!) My BMPC are 15% and cytogenetics were normal. Looking forward to hearing from you and Blee!
Positive vibes right back at you!
Positive vibes right back at you!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High-risk smoldering myeloma - experiences / opinions?
Positive vibes much appreciated, lizzie and gardengirl!
My doctor was using the Mayo criteria (see following links):
http://bloodjournal.hematologylibrary.org/content/122/26/4172.full.pdf (full text)
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.expansion.html
My situation is based on BMPC (40%), high FLC ratio (101), with unclear PET/CT. My FISH is neg.
Here's the gamut of options I've received:
-- close monitoring for now.
-- gentler chemo ( Rd [Revlimid+dexamethasone])
-- NCI [National Cancer Institute] trial using triplet [Kyprolis, Revlimid, dexamethasone]
-- aggressive chemo (VRD), plus SCT.
No wonder our emotions are reeling! I'm trying to process all this, and this forum has been so helpful. I posted under "Angst of smoldering myeloma" recently, and appreciated thoughtful responses from both TerryH and Multibilly. Given the lack of consensus amongst the experts, am trying to find that "leap of faith".
Glad to be able to share with both of you. Helps to not feel so scared and alone.
My doctor was using the Mayo criteria (see following links):
http://bloodjournal.hematologylibrary.org/content/122/26/4172.full.pdf (full text)
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.expansion.html
My situation is based on BMPC (40%), high FLC ratio (101), with unclear PET/CT. My FISH is neg.
Here's the gamut of options I've received:
-- close monitoring for now.
-- gentler chemo ( Rd [Revlimid+dexamethasone])
-- NCI [National Cancer Institute] trial using triplet [Kyprolis, Revlimid, dexamethasone]
-- aggressive chemo (VRD), plus SCT.
No wonder our emotions are reeling! I'm trying to process all this, and this forum has been so helpful. I posted under "Angst of smoldering myeloma" recently, and appreciated thoughtful responses from both TerryH and Multibilly. Given the lack of consensus amongst the experts, am trying to find that "leap of faith".
Glad to be able to share with both of you. Helps to not feel so scared and alone.
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
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