My M-spike is not staying the same and it is not going up and down. It is just going up, up, up. Even though i started low at 0.4 g/dL (4 g/L), it goes up 0.2ish g/dl every 6 months for the past 3 years.
This past visit, I was upgraded to smoldering mostly because of suppression in the unaffected immunoglobulins (I think). I don't have any of the major risk factors, but it still seems foolish to me to keep waiting. I can make a graph and extend the trend line. It makes a lovely slope. All of the other things they measure are heading in the wrong direction as well.
I understand waiting because things may remain stable and never get any worse, but everything we can measure is headed in the wrong direction.
So, is there a rationale to continuing to watch and wait?
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Re: Why wait?
Good question. My husband's oncologist said he would rather wait before starting treatments because of side effects. Also, my understanding is that once you start taking treatments, you have to stay on treatments.
Re: Why wait?
Oynk,
This is always a somewhat controversial issue to deal with.
Are you working with a multiple myeloma specialist? I have never come across anybody being technically classified as having smoldering multiple myeloma based on just uninvolved immunoglobulin suppression (immunoparesis). While immunoparesis can have prognostic significance, there are some very specific criteria for the classification of smoldering multiple myeloma, and immunoparesis is not one of them .... at least to my knowledge.
When you say "start treatment", are you talking about a drug-only approach or a stem cell transplant? I'm going to assume a drug-only treatment approach for now. Also, note that early treatment investigations for smoldering patients are almost exclusively limited to "high risk" smolderers.
You might find this debate to be insightful:
"High-Risk Smoldering Myeloma: To Treat or Not to Treat Still a Question", Oncology Times, Feb 10, 2015 (link to article) (debate between Dr. Joseph Mikhael and Dr. James Berenson)
Also, you need to consider if your insurance company would cover your early treatment. Insurance companies often times require that one meet some very specific criteria associated with symptomatic multiple myeloma in order to cover treatment. I also know of no clinical trials that are investigating treating "non high-risk" smolderers.
BTW, you might want to consider registering at this site and logging in when you post so that folks can better help you over time by being able to see your earlier posts, etc.
Hope this helps.
This is always a somewhat controversial issue to deal with.
Are you working with a multiple myeloma specialist? I have never come across anybody being technically classified as having smoldering multiple myeloma based on just uninvolved immunoglobulin suppression (immunoparesis). While immunoparesis can have prognostic significance, there are some very specific criteria for the classification of smoldering multiple myeloma, and immunoparesis is not one of them .... at least to my knowledge.
When you say "start treatment", are you talking about a drug-only approach or a stem cell transplant? I'm going to assume a drug-only treatment approach for now. Also, note that early treatment investigations for smoldering patients are almost exclusively limited to "high risk" smolderers.
You might find this debate to be insightful:
"High-Risk Smoldering Myeloma: To Treat or Not to Treat Still a Question", Oncology Times, Feb 10, 2015 (link to article) (debate between Dr. Joseph Mikhael and Dr. James Berenson)
Also, you need to consider if your insurance company would cover your early treatment. Insurance companies often times require that one meet some very specific criteria associated with symptomatic multiple myeloma in order to cover treatment. I also know of no clinical trials that are investigating treating "non high-risk" smolderers.
BTW, you might want to consider registering at this site and logging in when you post so that folks can better help you over time by being able to see your earlier posts, etc.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why wait?
Thanks guys.
From what I can tell, I wouldn't think I met the criteria for smoldering yet, but they did just upgrade me. One of the presentations I was viewing listed suppression of the other immunoglobulins as a criteria, but that was just a guess on my part as to the reason. (Actually, I think I also read somewhere that a 0.5 g/dl and/or 25% increase could also do it, so maybe that's it.) I'm just guessing on the rationale. (Yet another question to ask at my next appointment.) Truthfully, it doesn't really make a big difference to me, because it is just a matter of time the way things are going.
I do understand the idea of not giving a treatment (I was thinking drugs) that has bad side effects to someone who may never progress. I also understand the idea of identifying high-risk patients based on risk factors. I just think that steady progression should also be viewed as a risk factor. (BTW, I am still a bit of an anomaly from the research prospective, I guess, since I am young, female, and Caucasian).
I think of other trends in medicine. We give drugs (with somewhat serious side effects) to people with high cholesterol even though the yearly risk of progression to serious heart disease (in the absence of other factors) is relatively low and a pretty hefty percentage of people who are have heart attacks don't have high cholesterol.
Contrast that to smoldering multiple myeloma (SMM) with a 10% risk of progression per year; and knowing that almost all of the people who end up with full blown myeloma had MGUS / SMM prior.
Or, how about the fact that we use chemo drugs to treat rheumatoid arthritis. And, it's a great thing because it reduces pain and prolongs functions; but, arthritis isn't likely to kill you. (At least not directly).
I know I'm ranting a bit. I just feel powerless and frustrated (I know, welcome to the club). I have a ten-year-old with pretty significant health needs who is going to need her mother to be around for a lot longer. It feels a bit like when they predict a hurricane is headed your way. Sure, sometimes the predictions are wrong, but I'd rather evacuate than take the risk of waiting and seeing.
Oh, and I was typing on my cellphone and thought I was registered. It should be better now, thanks.
From what I can tell, I wouldn't think I met the criteria for smoldering yet, but they did just upgrade me. One of the presentations I was viewing listed suppression of the other immunoglobulins as a criteria, but that was just a guess on my part as to the reason. (Actually, I think I also read somewhere that a 0.5 g/dl and/or 25% increase could also do it, so maybe that's it.) I'm just guessing on the rationale. (Yet another question to ask at my next appointment.) Truthfully, it doesn't really make a big difference to me, because it is just a matter of time the way things are going.
I do understand the idea of not giving a treatment (I was thinking drugs) that has bad side effects to someone who may never progress. I also understand the idea of identifying high-risk patients based on risk factors. I just think that steady progression should also be viewed as a risk factor. (BTW, I am still a bit of an anomaly from the research prospective, I guess, since I am young, female, and Caucasian).
I think of other trends in medicine. We give drugs (with somewhat serious side effects) to people with high cholesterol even though the yearly risk of progression to serious heart disease (in the absence of other factors) is relatively low and a pretty hefty percentage of people who are have heart attacks don't have high cholesterol.
Contrast that to smoldering multiple myeloma (SMM) with a 10% risk of progression per year; and knowing that almost all of the people who end up with full blown myeloma had MGUS / SMM prior.
Or, how about the fact that we use chemo drugs to treat rheumatoid arthritis. And, it's a great thing because it reduces pain and prolongs functions; but, arthritis isn't likely to kill you. (At least not directly).
I know I'm ranting a bit. I just feel powerless and frustrated (I know, welcome to the club). I have a ten-year-old with pretty significant health needs who is going to need her mother to be around for a lot longer. It feels a bit like when they predict a hurricane is headed your way. Sure, sometimes the predictions are wrong, but I'd rather evacuate than take the risk of waiting and seeing.
Oh, and I was typing on my cellphone and thought I was registered. It should be better now, thanks.
Re: Why wait?
Dear Oynk,
Again, Multibilly is right. I think I am going to hire him to work with me if he keeps it up!
We need to be careful about the designation of smoldering myeloma. Immunoparesis (suppression of the uninvolved immunoglobulin) is a risk factor for progression of smoldering myeloma to multiple myeloma. But it is not a criterion for the diagnosis of smoldering myeloma. You still could have MGUS.
Also of note, Dr. Blade and his colleagues identified a form of smoldering myeloma with an evolving phenotype in a previously published study. Specifically, those patients with a continual increase in their M spike over time were at higher risk of developing myeloma requiring treatment than those with stable parameters. (See reference below.)
Although anti-cholesterol medications such as statins cause problems, the risk profile of myeloma chemotherapy is higher. As such, it is often more prudent to wait before leaping into early treatment!
I think a thorough re-evaluation as to your exact disease status would be of value at this point. A bone marrow examination may be a worthwhile thing to consider if not already done recently. Comprehensive bone imaging may also be of value (PET-CT, MRI).
If you do meet criteria for smoldering myeloma and have any high-risk features, you could consider a clinical study evaluating treatments with a more favorable side effect profile. In this regard, a study of daratumumab in smoldering multiple myeloma is gearing up and would be an attractive option. There is also an ongoing study looking at the use of Revlimid, as well, that is recruiting in the US and would be a good choice.
Regardless, you should be around for a very long time, and will have plenty of opportunities to spend valuable time with your child!
Good luck and hang in there!
Pete V.
Reference:
L. Rosiñol, J. Bladé, et al, “Smoldering multiple myeloma: natural history and recognition of an evolving type,” British Journal of Haematology, 2003 (link to full text)
Abstract:
Patients with smoldering multiple myeloma (SMM) meet the diagnostic criteria of multiple myeloma (multiple myeloma) but are asymptomatic. Between January 1978 and July 2001, 53 patients (median age 63 years) were diagnosed with SMM. The median serum M-protein and proportion of bone marrow plasma cells were 36 g/l and 27% respectively.
Two subsets of SMM were identified: (i) evolving SMM (n = 22), characterized by a progressive increase in serum M-protein, a previously recognized monoclonal gammopathy of undetermined significance (MGUS) and a significant higher proportion of IgA type and (ii) non-evolving SMM (n = 26) with stable M-protein that abruptly increases when symptomatic multiple myeloma develops.
Thirty-four patients developed symptomatic multiple myeloma. The median time to progression in the overall series was 3.2 years and the only feature associated with a shorter time to progression was the evolving versus non-evolving type (1.3 vs. 3.9 years respectively, P = 0.007). The pattern of progression consisted of anaemia, lytic bone lesions or both, without renal failure, hypercalcaemia or extramedullary plasmacytomas. Fifty-seven per cent of patients that required chemotherapy showed no or minimal response. The median survival from diagnosis and from progression was 8.2 and 3.5 years respectively.
Again, Multibilly is right. I think I am going to hire him to work with me if he keeps it up!
We need to be careful about the designation of smoldering myeloma. Immunoparesis (suppression of the uninvolved immunoglobulin) is a risk factor for progression of smoldering myeloma to multiple myeloma. But it is not a criterion for the diagnosis of smoldering myeloma. You still could have MGUS.
Also of note, Dr. Blade and his colleagues identified a form of smoldering myeloma with an evolving phenotype in a previously published study. Specifically, those patients with a continual increase in their M spike over time were at higher risk of developing myeloma requiring treatment than those with stable parameters. (See reference below.)
Although anti-cholesterol medications such as statins cause problems, the risk profile of myeloma chemotherapy is higher. As such, it is often more prudent to wait before leaping into early treatment!
I think a thorough re-evaluation as to your exact disease status would be of value at this point. A bone marrow examination may be a worthwhile thing to consider if not already done recently. Comprehensive bone imaging may also be of value (PET-CT, MRI).
If you do meet criteria for smoldering myeloma and have any high-risk features, you could consider a clinical study evaluating treatments with a more favorable side effect profile. In this regard, a study of daratumumab in smoldering multiple myeloma is gearing up and would be an attractive option. There is also an ongoing study looking at the use of Revlimid, as well, that is recruiting in the US and would be a good choice.
Regardless, you should be around for a very long time, and will have plenty of opportunities to spend valuable time with your child!
Good luck and hang in there!
Pete V.
Reference:
L. Rosiñol, J. Bladé, et al, “Smoldering multiple myeloma: natural history and recognition of an evolving type,” British Journal of Haematology, 2003 (link to full text)
Abstract:
Patients with smoldering multiple myeloma (SMM) meet the diagnostic criteria of multiple myeloma (multiple myeloma) but are asymptomatic. Between January 1978 and July 2001, 53 patients (median age 63 years) were diagnosed with SMM. The median serum M-protein and proportion of bone marrow plasma cells were 36 g/l and 27% respectively.
Two subsets of SMM were identified: (i) evolving SMM (n = 22), characterized by a progressive increase in serum M-protein, a previously recognized monoclonal gammopathy of undetermined significance (MGUS) and a significant higher proportion of IgA type and (ii) non-evolving SMM (n = 26) with stable M-protein that abruptly increases when symptomatic multiple myeloma develops.
Thirty-four patients developed symptomatic multiple myeloma. The median time to progression in the overall series was 3.2 years and the only feature associated with a shorter time to progression was the evolving versus non-evolving type (1.3 vs. 3.9 years respectively, P = 0.007). The pattern of progression consisted of anaemia, lytic bone lesions or both, without renal failure, hypercalcaemia or extramedullary plasmacytomas. Fifty-seven per cent of patients that required chemotherapy showed no or minimal response. The median survival from diagnosis and from progression was 8.2 and 3.5 years respectively.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Why wait?
Wow, thanks. Very informative. I will ask again at my next appointment about MGUS vs SMM. I found the study you referenced very interesting. It is more than ten years old. Is there anything more recent? I was part of the natural history study for MGUS / SMM at the NIH before they moved, but I didn't know if there was anything else.
I actually have another bone marrow biopsy scheduled for next month, so I'll know more then. The last one was 3 years ago and looked pretty good except for a high M:E ratio (6.9:1). I never could get a handle on what exactly that meant in terms I could understand.
Also, just had another bone survey (x-ray) and was planning on asking about MRI as well.
I hadn't thought about the issues with insurance, so that is definitely something to keep in mind.
I guess part of my anxiety is coming from the fact that things aren't going as "planned" I got the reassuring MGUS "You have nothing to worry about. You're m-spike is low and you have no risk factors" speech 3 years ago. My docs probably didn't even realize it, but this last visit's discussion went from "if" you ever were to progress to "when" you progress.
(BTW, it's not just the M-spike. My calcium and creatinine are going up each visit while my hemoglobin goes down. Heck, I even had a few bacterial infections. Even the weird things like the Beta 2 thing are headed in the wrong direction. Oh, and the neuropathy in my hands and feet is getting worse)
Sorry, not trying to be a whiner. It is good to vent my concerns to people who understand, especially since I am not really telling anyone about the whole MGUS / SMM thing on the assumption that nothing will ever happen.
Thanks again.
I actually have another bone marrow biopsy scheduled for next month, so I'll know more then. The last one was 3 years ago and looked pretty good except for a high M:E ratio (6.9:1). I never could get a handle on what exactly that meant in terms I could understand.
Also, just had another bone survey (x-ray) and was planning on asking about MRI as well.
I hadn't thought about the issues with insurance, so that is definitely something to keep in mind.
I guess part of my anxiety is coming from the fact that things aren't going as "planned" I got the reassuring MGUS "You have nothing to worry about. You're m-spike is low and you have no risk factors" speech 3 years ago. My docs probably didn't even realize it, but this last visit's discussion went from "if" you ever were to progress to "when" you progress.
(BTW, it's not just the M-spike. My calcium and creatinine are going up each visit while my hemoglobin goes down. Heck, I even had a few bacterial infections. Even the weird things like the Beta 2 thing are headed in the wrong direction. Oh, and the neuropathy in my hands and feet is getting worse)
Sorry, not trying to be a whiner. It is good to vent my concerns to people who understand, especially since I am not really telling anyone about the whole MGUS / SMM thing on the assumption that nothing will ever happen.
Thanks again.
6 posts
• Page 1 of 1