Hi all
A proposed sub-division was being dug up behind my home and I thought the dust was making me sick. After many tests I was diagnosed with smoldering myeloma. IgA lambda.
My paraproteins jumped around 15 or 16 g/L (1.5 - 1.6 g/dL) when initially diagnosed. Treatment was planned and then cancelled. My diagnosis is discussed in this thread here in the forum:
"Total confusion after diagnosis," Beacon forum discussion started Aug 29, 2014.
Last few months I have dropped to 14, then 11. I have just given more blood for this month and am really intrigued.
I'm really happy about this drop in paraproteins. Does it mean if it drops below 10 I will have gone back to MGUS stage?
Is this normal?
Thanks
Ailsa
Moderator's Note: For another forum discussion with a topic similar to this one, please see:
"M-spike & FLC improvement without treatment?"
Forums
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Can paraproteins (M-spike) drop without chemo?
Ailsa,
This could simply be a normal fluctuation/trend in the lifecycle of the disease. I think you will need a couple of more tests to see if any sort of a meaningful trend is developing here. Also, it can be hard to measuring IgA M-spikes accurately, so this might also be a factor. The IgA M-spike measurements simply aren't quite as accurate as they are with IgG type smoldering multiple myeloma .
Consider graphing your M-spike (paraprotein level) and involved free light chain and the free light chain ratio...you don't want to focus exclusively on the M-spike). You can get an idea of how my numbers fluctuate by looking at my graphs further down in this thread:
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690.html
Also, note that an M-spike dropping below 1.0 g/dL (10 mg/dL) is not a magic point in the diagnosis of smoldering multiple myeloma (however, 3.0 g/dL is a key level for diagnostic purposes). I think you might be confusing the M-spike number with your plasma cell percentage from your bone marrow biopsy, where a plasma cell value of > 10% puts one in the smoldering category. To be categorized as smoldering, your M-spike needs to be higher than 3.0 g/dL or your plasma % needs to be > 10% (with no CRAB).
Unfortunately, my understanding is that once you are diagnosed at a certain level, you don't get re-classified to a lower level, even if your numbers indicate otherwise. But obviously, your doc will take your current numbers into consideration in any dealings with him/her.
This could simply be a normal fluctuation/trend in the lifecycle of the disease. I think you will need a couple of more tests to see if any sort of a meaningful trend is developing here. Also, it can be hard to measuring IgA M-spikes accurately, so this might also be a factor. The IgA M-spike measurements simply aren't quite as accurate as they are with IgG type smoldering multiple myeloma .
Consider graphing your M-spike (paraprotein level) and involved free light chain and the free light chain ratio...you don't want to focus exclusively on the M-spike). You can get an idea of how my numbers fluctuate by looking at my graphs further down in this thread:
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690.html
Also, note that an M-spike dropping below 1.0 g/dL (10 mg/dL) is not a magic point in the diagnosis of smoldering multiple myeloma (however, 3.0 g/dL is a key level for diagnostic purposes). I think you might be confusing the M-spike number with your plasma cell percentage from your bone marrow biopsy, where a plasma cell value of > 10% puts one in the smoldering category. To be categorized as smoldering, your M-spike needs to be higher than 3.0 g/dL or your plasma % needs to be > 10% (with no CRAB).
Unfortunately, my understanding is that once you are diagnosed at a certain level, you don't get re-classified to a lower level, even if your numbers indicate otherwise. But obviously, your doc will take your current numbers into consideration in any dealings with him/her.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Can paraproteins (M-spike) drop without chemo?
Many thanks, Multibilly, for your clarification. Yes, I do get M spike and plasma % mixed up! But your clarification is great. Paraproteins from blood and plasma % from BMB.
Would that be why oncologist wants me to do another BMB? I managed to convince him it was too soon for another one at last month's appointment, but he said I would have to do it the following month then.
My first and only BMB was 15% increased plasma cells. Kappa/lambda ratio 0.3 mg/l. I get my blood results from the oncologist on Tuesday. Please wish me luck!
Would that be why oncologist wants me to do another BMB? I managed to convince him it was too soon for another one at last month's appointment, but he said I would have to do it the following month then.
My first and only BMB was 15% increased plasma cells. Kappa/lambda ratio 0.3 mg/l. I get my blood results from the oncologist on Tuesday. Please wish me luck!
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Can paraproteins (M-spike) drop without chemo?
Best of luck to you.
Last edited by Multibilly on Sat Oct 11, 2014 8:05 am, edited 1 time 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: Can paraproteins (M-spike) drop without chemo?
I agree with Multibilly. IgA monoclonal spikes / paraproteins can be difficult to measure and tend to fluctuate to greater extremes than other types. A useful test to complement the "M spike" number that you get from an SPEP is the serum IgA level.
There is also a Hevylite assay, developed by the Binding Site, that is useful as a way of measuring M spikes that are difficult to assess by other means. This is not in wide use yet, but I believe will gain increasing traction in these type of scenarios.
I would have a urinalysis checked to make sure you are not losing a large amount of protein in your urine that would change the steady state levels of the IgA M spike in your serum (highly unlikely scenario).
And, at the end of the day, if your M spike goes to 0 and your repeat bone marrow biopsy shows no disease, we will bottle up your serum and try and find out how the heck you did it!
Good luck!
Pete V.
There is also a Hevylite assay, developed by the Binding Site, that is useful as a way of measuring M spikes that are difficult to assess by other means. This is not in wide use yet, but I believe will gain increasing traction in these type of scenarios.
I would have a urinalysis checked to make sure you are not losing a large amount of protein in your urine that would change the steady state levels of the IgA M spike in your serum (highly unlikely scenario).
And, at the end of the day, if your M spike goes to 0 and your repeat bone marrow biopsy shows no disease, we will bottle up your serum and try and find out how the heck you did it!
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Can paraproteins (M-spike) drop without chemo?
Well my paraproteins have dropped to 8 g/L. I'm assuming it's due to all the healthy eating, herbal stuff working. Only problem is that my anaemia is getting worse and platelets still dropping, now at 64. Had a BMB last week and woke in a pool of blood. Any ideas how I could increase my platelets, or is it just part if the progression?
Am worried that despite my paraprotein level dropping, the platelet issue will send me back to hospital.
Am worried that despite my paraprotein level dropping, the platelet issue will send me back to hospital.
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Can paraproteins (M-spike) drop without chemo?
Ailsa,
You always need to look at the trends over time with most of these markers. What were your hemogloblin levels from your previous tests and what is it now? Same question for your platelet count (PLT)...please be sure to include the units of measure and the normal ranges from the lab for these values.
You always need to look at the trends over time with most of these markers. What were your hemogloblin levels from your previous tests and what is it now? Same question for your platelet count (PLT)...please be sure to include the units of measure and the normal ranges from the lab for these values.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Can paraproteins (M-spike) drop without chemo?
Results from BMB indicate plasma cells increased to 30%, ie doubled from last BMB, even though para proteins staying at 8. (Please don't have a field day with me Multibilly if terminology too basic). Portacath now goes in next week, followed by blood test, following by blood transfusion. On the same day oncology were going to start steroids, bortezomib (Velcade) and bisphosphonater for bone strengthening. Have suggested to them that I should have a few days after transfusion to build up strength prior to treatment with steroids and Velcade. Am I being silly or is it okay to do the lot in one day?
Oncologist is okay that I don't include chemo in the cocktail of drugs. Said I should get good results with Velcade and steroids.
(My platelets and haemoglobin started dropping about six months ago and now stand at platelets 61 and haemoglobin 88.).
Grateful any advice. Thanks
Oncologist is okay that I don't include chemo in the cocktail of drugs. Said I should get good results with Velcade and steroids.
(My platelets and haemoglobin started dropping about six months ago and now stand at platelets 61 and haemoglobin 88.).
Grateful any advice. Thanks
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Can paraproteins (M-spike) drop without chemo?
LOL about your comment about me. I will leave it to others that have been down this particular road to comment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Can paraproteins (M-spike) drop without chemo?
Whoa!
I was seeking help and for my disease. Obviously I've come to the wrong place.
Don't act so pedantic multibilly. Not everyone knows medical jargon. People are sick and trying to seek advice. I am sorry I have been open with my disease. You have pushed me away from this site and for that reason alone I would not recommend it to anyone.
I was seeking help and for my disease. Obviously I've come to the wrong place.
Don't act so pedantic multibilly. Not everyone knows medical jargon. People are sick and trying to seek advice. I am sorry I have been open with my disease. You have pushed me away from this site and for that reason alone I would not recommend it to anyone.
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
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