Hello,
I'm looking to find anyone who can interpret what is going on. I'm very confused as to how I am doing?
I got most of the results from the testing/follow up one year after auto transplant. I guess I'll break it up:
Good News:
No bone Involvement
No organ involvement
All blood tests are normal except a little light on platelets due to Revlimid. All others are dead center on the graphs.
PET/CT Scan etc - All normal showing no imaging issues.
No anemia
No calcium issues
My doctor said if I walked in the door today to be tested for multiple myeloma, that with these test results she would have to say I do not currently have multiple myeloma.
Bad News:
5% cell involvement it appears
Confusing News:
My doctor is waiting to confirm results until after she gets back the cytometry tests because the 5% abnormal cells that appear to be myeloma will not accept the stain that confirms the fact that they are myeloma. She also looked at my history and, this is my 5th or 6th bone marrow biopsy and all other times the stain did take.
Of course I am nonsecretory, so I have no light chain or m-spike movement. I also feel perfectly normal, no pain, sickness, colds etc.
I did speak with a nurse knowledgeable about myeloma and she said, instantly, that if you have 5% or less and no other issue you are in remission -- complete, but not sCR. My doctor said the new standard is 0% or nothing. The only time she calls remission, in other words, is zero!
For now I have been recommended to stay on Revlimid maintenance and get blood tests monthly and biopsy again in 6 months.
Anyone have any thoughts or opinions on this? Should I get a second opinion, am I in remission??
Are we doing the right thing simply watching and doing maintenance Revlimid, hoping the % either lowers or maintains?
Having nonsecretory is difficult but at least it is better for my kidneys. This is stressful but I feel kinda good about the numbers!
Thanks
Forums
Re: Nonsecretory - confusing bone marrow biopsy results
So, there are normal, healthy plasma cells and then there are the villainous myeloma monoclonal plasma cells, right? You are always going to have some normal plasma cells in your bone marrow, otherwise, you wouldn't be alive to read this post
Your doc is right in that an SCR is based on there being 0% myeloma plasma cells in your bone marrow. But he didn't mean there were no plasma cells in your bone marrow whatsoever. Since nothing showed up on your stains, I believe the doc is waiting on your flow cytometry results to verify this. The flow cytometry test will also count your monoclonal plasma cells ... if they are there.
Note that for SCR, you also need to have a normal FLC ratio.
I think the nurse is confusing the normal level of plasma cells in your bone marrow (less than 5%) with the SCR definition of less than 5% healthy plasma cells in your marrow, coupled with 0% those plasma cells being clonal.
Make sense?
I think you have reason to be optimistic.

Your doc is right in that an SCR is based on there being 0% myeloma plasma cells in your bone marrow. But he didn't mean there were no plasma cells in your bone marrow whatsoever. Since nothing showed up on your stains, I believe the doc is waiting on your flow cytometry results to verify this. The flow cytometry test will also count your monoclonal plasma cells ... if they are there.
Note that for SCR, you also need to have a normal FLC ratio.
I think the nurse is confusing the normal level of plasma cells in your bone marrow (less than 5%) with the SCR definition of less than 5% healthy plasma cells in your marrow, coupled with 0% those plasma cells being clonal.
Make sense?
I think you have reason to be optimistic.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nonsecretory - confusing bone marrow biopsy results
Previous post has this answered already but I will confirm if needed. What we look for in the marrow are "clonal" plasma cells (ie kappa or lambda restricted). Having polyclonal (mix of kappa and lambda) plasma cells are OK and sometimes you can see 3 or 4 or 5% that are still NOT clonal.
The stain is probably for CD 38 or 138 (or maybe even kappa or lambda) and, if not seen as clonal or malignant plasma cells, that is good.
The stain is probably for CD 38 or 138 (or maybe even kappa or lambda) and, if not seen as clonal or malignant plasma cells, that is good.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Non-secretory - confusing bone marrow biopsy results
Well...how does "we believe you have reverted to MGUS status" sound?? It Actually makes sense I have 5% or less bad cells and nothing else. Because I am non secratory there are no markers...if going into transplant I had 20%..which I did...and there have been no tests since the transplant that are conclusive we don't know if I have been reduced to 5% or if I hit CR and numbers are rising but my multiple myeloma specialist does not think that is what is going on ... DR. comments
"your SPEP and IFE are negative, your beta 2 microglobulin is absolutely normal, PET/Ct done few months ago was good, I have no reason to think you are relapsing" Then at the call back later the person doing the Bone Marrow Biopsy said they believe I have reverted to MGUS status but will know more at next Biopsy in July now that they have markers.
Seems that if this is true I may have got lucky for awhile and for the first time since I discovered this....
I hope so...I am encouraged
"your SPEP and IFE are negative, your beta 2 microglobulin is absolutely normal, PET/Ct done few months ago was good, I have no reason to think you are relapsing" Then at the call back later the person doing the Bone Marrow Biopsy said they believe I have reverted to MGUS status but will know more at next Biopsy in July now that they have markers.
Seems that if this is true I may have got lucky for awhile and for the first time since I discovered this....
I hope so...I am encouraged
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bluemountain
Re: Nonsecretory - confusing bone marrow biopsy results
My wife has been told her myeloma is very hard to track, meaning her numbers look good, but the myeloma is continuing to do damage (uncontrolled)
Make sure you fully investigate any new pains. My wife would get a strong pain, doctor would do MRI and discover myeloma, then order radiation.
Doctor says best way to monitor myeloma for my wife is MRI.
Make sure you fully investigate any new pains. My wife would get a strong pain, doctor would do MRI and discover myeloma, then order radiation.
Doctor says best way to monitor myeloma for my wife is MRI.
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