I was diagnosed with MGUS in 2008 and have slowly increased my "numbers". I am followed every 3 months by a very experienced myeloma specialist. I am IGA Lambda. My m-spike started at 0.7 but is now not measurable because it is in the gamma globulin region- does that mean non-secreatory? My bone marrow started at 5% and is now 10%. My calcium, renal, and albumin have been normal. My initial bone survey showed 2 lytic lesions. I now have only 1 per PET. My FLC RATIO has slowly dropped and is now 0.11. My FISH started out normal and now I have abnormalities; amp 1q, t(4:14) and del 13. I am told that I have to be monitored so frequently because he can't measure the m-spike. So the abnormal ratio and chromosomes make me high risk, right? I feel like I am "circling the drain". I asked if you could remain smoldering with these abnormal chromosomes for many years, but I don't feel like he is being as blunt as I want. My next bone marrow is in 3 months. It is not fun living in 3 month increments! I guess I would like some input as to if it looks like I am high risk SMM, non-secretory. I am a 48 year old female. I am an RN case manager and it is difficult not being in control! Should I seriously start looking at treatment options?
Thank for letting me rant!
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Jaksix - Name: Jules
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2007 MGUS, 2012 Smoldering
- Age at diagnosis: 42
Re: High risk smoldering myeloma?
I was diagnosed with smoldering myeloma in 2002 and was monitored monthly for the first two years - receiving only aredia and then zometa - because the Onc expected changes to occur pretty quickly. However, my numbers stayed quite stable all these years (there were times when my Igg numbers increased and then leveled off and remained stable again - no anemia-no lesions) and I was monitored less frequently - first every 3 mos and most recently every 6 mos. Recently my numbers have been increasingly headed in the wrong directions (confirmed by another bone marrow aspiration at the end of July) and I am now considered at high risk for active multiple myeloma. I have spoken to my Onc about the early intervention treatment (Rev and dex) as reported in New England Journal of Medicine in early August and although I have not quite made that decision yet we have agreed that I need to be monitored very closely now - every 6 weeks. So I guess my point is that this disease is just so unpredictable, the only thing you can do is continue to be monitored by your doc and address each issue as it occurs. No patient is the same. I am an active 74 year old female, live by myself, do most of my own yard work, continue to work as a consultant,and walk 1.5-2 miles per day (because I have a very naggy dog).
Re: High risk smoldering myeloma?
Non-secretory myeloma (MGUS, Smoldering or active) are always a bit more difficult to monitor simply because we are unable to follow disease progression or response with serum and urine studies. I am not sure how the M-spike is not evaluable- IgA can sometimes show-up in the beta region vs gamma region on electrophoresis, but still should be evaluable. Furthermore, 0.7 grams should translated to a quantifiable (measured via IgA quantitative immunoglobulins). Of course those comments are limited by the information in the post.
As you may well know there are a number of ways in which we can determine risk in the smoldering category. Mayo Risk (greater then or equal to 10% PC, M-pike >3 and SFLC ratio >8 or <0.125); PETHEMA (immonparesis [decreased uninvolved Ig) and percent abnormal PCs) and most recently a commentary on the risk based on FISH anomalies. We are still trying to define the the true definition of high risk SMM and should we treat early (very poor agreement between the risk systems). Obviously, data out of Spain and other ongoing studies suggests that there may be merit in treating high risk multiple myeloma. However, I would suggest that outside a clinical trial this is not common practice and more data needs to be developed (as well a common definition of high risk smoldering disease) before we change management strategies outside a clinical trial. Clinical trials are always appropriate; however, most SMM trials will not have incorporated FISH to date.
With stable CRAB parameters- questionable bone lesions (as long as stable and small) and the percent PCs only increasing 5% (5-->10%) over the course of 5 years- I would continue to monitor carefully. 3 months should be quite reasonable. If non-secretory, continue to monitor Hgb, Creatinine , urine protein, Calcium, beta 2, LDH, percetn PCs and imaging without therapy- unless appropriate trial is available.
As you may well know there are a number of ways in which we can determine risk in the smoldering category. Mayo Risk (greater then or equal to 10% PC, M-pike >3 and SFLC ratio >8 or <0.125); PETHEMA (immonparesis [decreased uninvolved Ig) and percent abnormal PCs) and most recently a commentary on the risk based on FISH anomalies. We are still trying to define the the true definition of high risk SMM and should we treat early (very poor agreement between the risk systems). Obviously, data out of Spain and other ongoing studies suggests that there may be merit in treating high risk multiple myeloma. However, I would suggest that outside a clinical trial this is not common practice and more data needs to be developed (as well a common definition of high risk smoldering disease) before we change management strategies outside a clinical trial. Clinical trials are always appropriate; however, most SMM trials will not have incorporated FISH to date.
With stable CRAB parameters- questionable bone lesions (as long as stable and small) and the percent PCs only increasing 5% (5-->10%) over the course of 5 years- I would continue to monitor carefully. 3 months should be quite reasonable. If non-secretory, continue to monitor Hgb, Creatinine , urine protein, Calcium, beta 2, LDH, percetn PCs and imaging without therapy- unless appropriate trial is available.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: High risk smoldering myeloma?
Sorry- if not already receiving Zometa (or Aredia) with Calcium and Vitamin D- I would consider it as well.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: High Risk Smoldering?
Hi Dr. Shain,
Such helpful and informative responses.
Should someone with SMM receive Zometa or Aredia, or is it only recommended for High Risk SMM?
Thank you,
Dana
Such helpful and informative responses.
Should someone with SMM receive Zometa or Aredia, or is it only recommended for High Risk SMM?
Thank you,
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: High risk smoldering myeloma?
There is data demonstrating that smoldering myeloma patients also have a microscopic bone disease. That being said- typically simply recommend calcium + vitamin D for non-high risk smoldering myeloma. Then in high-risk smoldering myeloma patients with any hints of boney disease I consider placing them on zoledronic acid (Zometa). But it is patients specific - It is not perfect - side effects (post-infusion reactions, osteonecrosis of the jaw and potential kidney complications ... ) and other potential issues (financial, social and other).
Further it is preferable that smoldering patients receive bone modulating therapy under the auspices of a clinical trial.
A Phase 3 study out of Italy in smoldering myeloma demonstrated reduced risk of SRE (skeletal related events) in patients receiving zoledronic acid (Zometa) over placebo (55% vs 78%). No differences were seen in progression or other CRAB criteria (Musto et al Cancer 2008).
D'Arena et al in Leukemia and Lymphoma (2011) similarly demonstrated decreased SRE in patient treated with pamidronate (Aredia) vs placebo at progression (39% vs 72%).
One cannot compare the numbers - i.e. assume that Aredia is better then Zometa. In fact, I feel it is the opposite for myeloma patients. Furthermore, bisphosphonates [like Aredia and Zometa] are not without side effects so it is not for everyone. Even with these results - bisphosphonates in smoldering myeloma is still not currently standard of care.
Further it is preferable that smoldering patients receive bone modulating therapy under the auspices of a clinical trial.
A Phase 3 study out of Italy in smoldering myeloma demonstrated reduced risk of SRE (skeletal related events) in patients receiving zoledronic acid (Zometa) over placebo (55% vs 78%). No differences were seen in progression or other CRAB criteria (Musto et al Cancer 2008).
D'Arena et al in Leukemia and Lymphoma (2011) similarly demonstrated decreased SRE in patient treated with pamidronate (Aredia) vs placebo at progression (39% vs 72%).
One cannot compare the numbers - i.e. assume that Aredia is better then Zometa. In fact, I feel it is the opposite for myeloma patients. Furthermore, bisphosphonates [like Aredia and Zometa] are not without side effects so it is not for everyone. Even with these results - bisphosphonates in smoldering myeloma is still not currently standard of care.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: High risk smoldering myeloma?
Dr. Shain,
Thank you again for this information, it surely provides me with a great starting point. Best to you.
Dana
Thank you again for this information, it surely provides me with a great starting point. Best to you.
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: High risk smoldering myeloma?
Thanks D.r Ken for your replies. My hematologist said that the m-spike is hiding in the gamma rangeand is now undetcable, initially it was 1.7 then 0.7 and now indictable he tells me that the only way to monitor are FLCs, MRI, PET/ct24 hr urine and bone marrow biopsy, which I get every 3 months.and now my FISH Came back abnormal, amp 1q, del 13, and t(4;14). The only CRAB I have is 2 small lytic lesions. I have never received treatment. In the beginning I was offered biophosphanate. I chose to not start it at that time. Now I am wondering if I do néed to start Zometa, calcium, vit d, biophosomate.
I don't understand why the m spike in undetectable , hiding in the gamma region.does that m ne oligosecretory?
I am a nurse and he is well aware of this, the other day he was documenting about me and he crossed out MGUS and wrote HR SMM he saw that I saw this and he went to another screen. When he listened to my lung they were rattlely. He wrote clear, but changed it to extremely decreased in the bilateral lobes. I have "Flunked" my pulmonary function test, 2 times abnormal. He knows that I have pulmonary fibrosis too. He didnt want me to see that he wrote HR SMM or that my lung sounds are bad, remember he first wrote clear, then diminished.
I asked him educated questions about my FISH abnormalities, he gave me brief answers, but I would love have to tell him I knew about the bad ones to have, he would only say that yes, they do coorolate with bad outcome.
My autoimmune flares more frequently. I am wondering if my flare is because my good cells are working overtime to fight the myeloma. I get fevers that last 4-5 days, pain,aches, short of breath, wheezy.
I need my doctor to lay it out on the table. I don't want to try to feel comfortable when it is introduced 48 hrs prior to treatment. My hematologist does random auto transplants. I am reading that allo is better for high risk. .?
I live in Iowa and have been thinking of a trial .
Having these translocation, will that make me progress to symptomatic faster than if I didn't have them?
Thanks all!
I don't understand why the m spike in undetectable , hiding in the gamma region.does that m ne oligosecretory?
I am a nurse and he is well aware of this, the other day he was documenting about me and he crossed out MGUS and wrote HR SMM he saw that I saw this and he went to another screen. When he listened to my lung they were rattlely. He wrote clear, but changed it to extremely decreased in the bilateral lobes. I have "Flunked" my pulmonary function test, 2 times abnormal. He knows that I have pulmonary fibrosis too. He didnt want me to see that he wrote HR SMM or that my lung sounds are bad, remember he first wrote clear, then diminished.
I asked him educated questions about my FISH abnormalities, he gave me brief answers, but I would love have to tell him I knew about the bad ones to have, he would only say that yes, they do coorolate with bad outcome.
My autoimmune flares more frequently. I am wondering if my flare is because my good cells are working overtime to fight the myeloma. I get fevers that last 4-5 days, pain,aches, short of breath, wheezy.
I need my doctor to lay it out on the table. I don't want to try to feel comfortable when it is introduced 48 hrs prior to treatment. My hematologist does random auto transplants. I am reading that allo is better for high risk. .?
I live in Iowa and have been thinking of a trial .
Having these translocation, will that make me progress to symptomatic faster than if I didn't have them?
Thanks all!
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Jaksix - Name: Jules
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2007 MGUS, 2012 Smoldering
- Age at diagnosis: 42
Re: High risk smoldering myeloma?
I believe the study Dr. Shain referred to looking at risk of progression in smoldering myeloma and chromosomal abnormalities is this one:
https://myelomabeacon.org/news/2013/03/29/chromosomal-abnormalities-smoldering-myeloma-high-risk-progression/
It says "patients with a chromosomal abnormality known as t(4;14) progressed to myeloma faster, and had shorter survival compared to patients with other chromosomal abnormalities ...
Patients with a chromosomal abnormality known as del(17p) also appeared to progress more rapidly than those with other chromosomal abnormalities. However, the number of patients with del(17p) was small, making it difficult for the researchers to draw any definitive conclusions about this patient group."
Note, however, that this was a retrospective study at a single institution. The more accepted definitions of risk of progression for smoldering myeloma are those from the Mayo Clinic and Spanish myeloma group that Dr. Shain mentioned -- and even those don't come close to agreeing when it comes to classifying patients.
I think that, at this point, you really need to go back to your physician and pin down exactly what you have. Is it smoldering and, if so, should it be considered high-risk? Is it non-secretory? Is it possibly non-secretory active myeloma, given your lytic lesions?
Your physician has the complete picture and is really the best person to tell you exactly what your diagnosis is.
https://myelomabeacon.org/news/2013/03/29/chromosomal-abnormalities-smoldering-myeloma-high-risk-progression/
It says "patients with a chromosomal abnormality known as t(4;14) progressed to myeloma faster, and had shorter survival compared to patients with other chromosomal abnormalities ...
Patients with a chromosomal abnormality known as del(17p) also appeared to progress more rapidly than those with other chromosomal abnormalities. However, the number of patients with del(17p) was small, making it difficult for the researchers to draw any definitive conclusions about this patient group."
Note, however, that this was a retrospective study at a single institution. The more accepted definitions of risk of progression for smoldering myeloma are those from the Mayo Clinic and Spanish myeloma group that Dr. Shain mentioned -- and even those don't come close to agreeing when it comes to classifying patients.
I think that, at this point, you really need to go back to your physician and pin down exactly what you have. Is it smoldering and, if so, should it be considered high-risk? Is it non-secretory? Is it possibly non-secretory active myeloma, given your lytic lesions?
Your physician has the complete picture and is really the best person to tell you exactly what your diagnosis is.
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JimNY
Re: High risk smoldering myeloma?
First of all, I'd like to say hello to the wonderful users of this site and the doctors who generously provide such useful information. I am a new member; and my mother has been diagnosed (or I should say is currently being diagnosed!) with smoldering multiple myeloma (percentage of bone marrow PC's ~11%, IgG ~2700 and a kappa/lambda free-light chain ratio of over 70). We have received the FISH results but still waiting on the conventional karyotyping. I thought my question is related to high-risk smoldering and decided to post it here rather than create a new topic.
My question is the following: the FISH report says that there is 13q deletion in 7% of the cells, and the t(4;14) translocation has been identified in 2-4 cells (out of 200), which are of a different clone than the cells presenting with the 13q deletions. And then it says that since this latter abnormality is below the "cutoff value", "the significance of this translocation should be evaluated with respect to clinical findings"...So, does this mean that she has the t(4;14) for sure and that it may present as a significant factor later on? Does the percentage of these aberrant cells yield any extra information here than the mere presence of the translocation (in terms of time to progression, for example)?
Thank you very much for your help.
My question is the following: the FISH report says that there is 13q deletion in 7% of the cells, and the t(4;14) translocation has been identified in 2-4 cells (out of 200), which are of a different clone than the cells presenting with the 13q deletions. And then it says that since this latter abnormality is below the "cutoff value", "the significance of this translocation should be evaluated with respect to clinical findings"...So, does this mean that she has the t(4;14) for sure and that it may present as a significant factor later on? Does the percentage of these aberrant cells yield any extra information here than the mere presence of the translocation (in terms of time to progression, for example)?
Thank you very much for your help.
10 posts
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