Hi everyone,
After 2 months of trying to figure this all out (stemming from anemia) I was just diagnosed with smoldering myeloma 2 weeks ago, and I am at a loss. I have been researching as much as I can to educate myself and so glad I found this forum!
These are my results:
immunoelectropheresis protein total 7.6
albumin 4.0
a/g ratio 1.1
alpha 1 globulin .01
alpha 2 globulin 0.7
beta 1.7
gamma 0.9
igg 1055
iga 855
igm133
mspike 0.1
sed rate 25
immunofixatio interpretation : 2 IGA lambda bands seen
immuno/protein electrophoresis ur
protein electrophoresis, urine protein, total 12
remarks: unable to detect a electrophoretic pattern
Can someone please take a look at these results and tell me what you think? I really thought I had MGUS but the bone marrow aspiration & biopsy knocked that out of the park when it came back at 10%
I also thought I needed to have a larger m spike, apparently I was wrong about that too.
What am I to expect? I hate this wait and watch status! I can NOT believe there is no preventative treatment for this! Anyone know of any clinical trials? Or have participated in one?
Lyn
PS: (I will say I am grateful for it not yet manifesting, and I know others are in a worse situation, so I apologize for what may have come across as whining... )
Forums
Re: Newly diagnosed smoldering and looking for feedback
10% is right on the edge of so-called smoldering (versus MGUS), and may well be a sampling error. But I would want to know about other factors, including those associated with high-risk smoldering multiple myeloma:
What are your HB levels? Light chain levels? beta microglobulin? Did they do any cytogenetics (testing for chromosomal abnormalities) - which is typically the most informative - to see whether you have any high risk mutations?
What are your HB levels? Light chain levels? beta microglobulin? Did they do any cytogenetics (testing for chromosomal abnormalities) - which is typically the most informative - to see whether you have any high risk mutations?
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BottomLineThisTime
Re: Newly diagnosed smoldering and looking for feedback
I agree with the previous post. The 10% cut off to distinguish smoldering multiple myeloma from MGUS is somewhat arbitrary but was supposed to identify a group of patients at higher risk of progression to myeloma needing treatment when analyzing groups of patients.
The important thing is to ensure that you have appropriate monitoring of kidney function, calcium levels, blood counts, and monitoring for bone disease as well.
Every person is unique. While watch and wait can be very unnerving, the hope is that you never need treatment for this problem.
The important thing is to ensure that you have appropriate monitoring of kidney function, calcium levels, blood counts, and monitoring for bone disease as well.
Every person is unique. While watch and wait can be very unnerving, the hope is that you never need treatment for this problem.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Newly diagnosed smoldering and looking for feedback
Thanks for your answers.
I did take a minute to write down the above questions, and will bring them to my dr 's attention. I am doing the best I can with the research, so this is very helpful when not sure what questions to ask.
is there anything else I should know or ask? As far as diagnosis?
I did take a minute to write down the above questions, and will bring them to my dr 's attention. I am doing the best I can with the research, so this is very helpful when not sure what questions to ask.
is there anything else I should know or ask? As far as diagnosis?
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evndnl94 - Name: lyn
- Who do you know with myeloma?: no one
Re: Newly diagnosed smoldering and looking for feedback
The treatment of SMM is somewhat controversial. There is no nice, simple, totally-safe pill you can take to keep SMM from going into full-fledged symptomatic myeloma. The treatment for SMM can be unpleasant and have bad side effects, and being treated for SMM does not guarantee a better quality of live or a longer survival time (compared with people who begin treatment only after symptomatic myeloma appears). Moreover, SMM can potentially stay at the smoldering level for years. My impression is that most experts would not recommend treating SMM unless your risk-level is high. I would suggest getting a second opinion at a specialized myeloma center if there is one near you.
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: Newly diagnosed smoldering and looking for feedback
I am smoldering as well with a similar plasma cell percentage in my bones. The earlier posts are on the money. You need the additional data on FLCs, blood tests to evaluate kidney & blood health and cytogenetics (a FISH/cytogenetic test should have been done when you got your bone marrow biopsy...if not they might still have your sample in storage that they can run the FISH on). But you should also be getting a full body skeletal Xray series, MRI or PET/CT to see if you have any bone lesions. And perhaps a DEXA scan to evaluate your bone density.
Having said this, you can easily smolder the rest of your life (which is my goal). Even if your are staged as being "High Risk" based on cytogenetics or some other factor, it's still a big question whether you would want to initiate treatment or just wait till you became symptomatic. I personally will wait till I become symptomatic to initiate any sort of chemo and would likely make this same decision even if I were high risk (I'm not high risk and my cytogenetics are thankfully normal).
I'm a big believer in diet, exercise and supplements to hold this thing at bay. Also, you should be working with somebody that lives and breathes this disease, not just an oncologist that sees a handful of multiple myeloma patients now and then.
Having said this, you can easily smolder the rest of your life (which is my goal). Even if your are staged as being "High Risk" based on cytogenetics or some other factor, it's still a big question whether you would want to initiate treatment or just wait till you became symptomatic. I personally will wait till I become symptomatic to initiate any sort of chemo and would likely make this same decision even if I were high risk (I'm not high risk and my cytogenetics are thankfully normal).
I'm a big believer in diet, exercise and supplements to hold this thing at bay. Also, you should be working with somebody that lives and breathes this disease, not just an oncologist that sees a handful of multiple myeloma patients now and then.
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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 smoldering and looking for feedback
Thank for your post mountainguy.
I definitely have been writing down questions to take with me next week to the doctor. the only symptom I have is anemia. it is bad because I have decreased iron storage which isn't helping the matter.
I did have a bone scan done, and everything looked ok, as far as I know, other than being diagnosed with scoliosis.
I myself plan on staying in the smoldering stage for the rest of my life too, however, it scares me to think this could change..the damn question is not if, but when.
I hope that feeling will disappear with time.
Thanks again.
I definitely have been writing down questions to take with me next week to the doctor. the only symptom I have is anemia. it is bad because I have decreased iron storage which isn't helping the matter.
I did have a bone scan done, and everything looked ok, as far as I know, other than being diagnosed with scoliosis.
I myself plan on staying in the smoldering stage for the rest of my life too, however, it scares me to think this could change..the damn question is not if, but when.
I hope that feeling will disappear with time.
Thanks again.
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evndnl94 - Name: lyn
- Who do you know with myeloma?: no one
Re: Newly diagnosed smoldering and looking for feedback
Is it true, I don't have to have a high m spike but can have a high IGA count? And 10% plasma cells to be in the smoldering stage? Is this rare? IgA myeloma?
My doctor originally suggested it would probably be MGUS however, the pathology report indicated smoldering myeloma.
As I stated above, the only part of CRABI have is my anemia. my hemoglobin stays at 10 for the most part, and my iron level doesn't even make the chart, It was under 10.
Thanks.
My doctor originally suggested it would probably be MGUS however, the pathology report indicated smoldering myeloma.
As I stated above, the only part of CRABI have is my anemia. my hemoglobin stays at 10 for the most part, and my iron level doesn't even make the chart, It was under 10.
Thanks.
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evndnl94 - Name: lyn
- Who do you know with myeloma?: no one
Re: Newly diagnosed smoldering and looking for feedback
You always need to be sure to include the units of measurement for your markers. Different labs utilize different units of measure and you therefore often have to convert your figures by a factor of 10, 100, etc. In particular, we don't know what units of measure you are using for your M-Spike. Is your M-Spike expressed in g/dL or something else?
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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 smoldering and looking for feedback
As I am gathering my information, I am having a hard time understanding how I can be diagnosed with smoldering myeloma when I have a low m spike (under 3) and a plasma count of exactly 10.
According to the research I have done, it states that my m spike should be greater than 3 and my plasma count greater than 10. I also have anemia, which is part of crab, and once again research says I shouldn't have any part of CRAB.
I really thought I had MGUS, but the pathology report is where SMM came up...
If I am not mistaken, is it true I can have a low spike (rare cases)?
Sorry for all the questions, but I know there are people out there that have probably been in my shoes as they were newly diagnosed. Just looking for answers. Thanks for all your help!
According to the research I have done, it states that my m spike should be greater than 3 and my plasma count greater than 10. I also have anemia, which is part of crab, and once again research says I shouldn't have any part of CRAB.
I really thought I had MGUS, but the pathology report is where SMM came up...
If I am not mistaken, is it true I can have a low spike (rare cases)?
Sorry for all the questions, but I know there are people out there that have probably been in my shoes as they were newly diagnosed. Just looking for answers. Thanks for all your help!
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evndnl94 - Name: lyn
- Who do you know with myeloma?: no one
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