Thanks Cheryl G for your feeback.
A final blood test was done last week at the center where my mom will continue with her follow ups and future treatments, if needed. They are specialized in all sorts of cancers and myeloma also, so I am sure they have probably tested the FLC ratios.
There is one odd thing: Before doing a BMB in previous clinic, they did a myelomgramme. Thats an exam where they take a blood sample through the bone in between her chest. The results came out at 9%, but those results were for some reason considered insufficient, and they had to do a proper BMB, which came out 50%.
Another thing I am worried about is that the secretary mentioned in the final blood test done last week (which is 3 weeks after the previous one, for which I put the images on this thread) that her spike was higher. She mentioned something like 22g, but I am not sure if she really knew what she was talking about, and I am pretty sure that it cant have shot up so quickly considering her 2 previous steady results. I hope there is nothing to be worried about.
Tomorrow she will be doing a complete MRI. They will probably inject a liquid to see better (apaprently she can handle it because her kidney function is 100% normal).
I'm praying desperately in the hope that it will be ok.
How fast are we evolving on treatments and remission improvements? Are we looking at a terrible struggle overall, or do most patients have good chances of remission with a stem cell transplant + treatment?
God I'm so worried ...
Forums
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Hi Maro,
First, you don't know yet if your Mom is symptomatic (has any CRAB issues, where C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions). So, please keep that in mind. It sounds like the MRI is the last test they will be doing to confirm this (checks for bone lesions).
It's much better to have been diagnosed with multiple myeloma now than it was just a few years ago.
Should your Mom become symptomatic, there is great hope for her, regardless if she uses chemo-only treatment or chemo+SCT. The multiple myeloma drugs that have come out in the past few years are nothing short of amazing. Also, it's no like the door closes for any good treatment possibilities when she turns 65, just because she no longer qualifies for an SCT.
If she becomes symptomatic, she can very well live the rest of a normal life with or without an SCT....with the currently available multiple myeloma drugs. Having said that, there is also a wave of next-generation multiple myeloma drugs that will be available in the coming years. This will simply add to the already impressive lineup of multiple myeloma drugs on the market.
Best of luck on the MRI test. Take a deep breath, and let us know how it goes.
First, you don't know yet if your Mom is symptomatic (has any CRAB issues, where C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions). So, please keep that in mind. It sounds like the MRI is the last test they will be doing to confirm this (checks for bone lesions).
It's much better to have been diagnosed with multiple myeloma now than it was just a few years ago.
Should your Mom become symptomatic, there is great hope for her, regardless if she uses chemo-only treatment or chemo+SCT. The multiple myeloma drugs that have come out in the past few years are nothing short of amazing. Also, it's no like the door closes for any good treatment possibilities when she turns 65, just because she no longer qualifies for an SCT.
If she becomes symptomatic, she can very well live the rest of a normal life with or without an SCT....with the currently available multiple myeloma drugs. Having said that, there is also a wave of next-generation multiple myeloma drugs that will be available in the coming years. This will simply add to the already impressive lineup of multiple myeloma drugs on the market.
Best of luck on the MRI test. Take a deep breath, and let us know how it goes.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Questions from France about smoldering myeloma
Maro,
I'm not going to try to say too much here because I think Multibilly and Cheryl are pretty much on top of things, but the one thing I noticed is your comment about the M-spike of 22 and whether or not that is really believable.
I think it is, because the secretary was probably using the units commonly used in France, and which are also used in the lab reports that you provided us (which are great, by the way). Those units are g/L. But an M-spike of 22 g/L is equivalent to 2.2 g/dL, which are the units frequently used in the U.S. They are the units that Cheryl used when she said your mother's M-spike looks to be in the 1.6 to 2.1 range.
I'm not going to try to say too much here because I think Multibilly and Cheryl are pretty much on top of things, but the one thing I noticed is your comment about the M-spike of 22 and whether or not that is really believable.
I think it is, because the secretary was probably using the units commonly used in France, and which are also used in the lab reports that you provided us (which are great, by the way). Those units are g/L. But an M-spike of 22 g/L is equivalent to 2.2 g/dL, which are the units frequently used in the U.S. They are the units that Cheryl used when she said your mother's M-spike looks to be in the 1.6 to 2.1 range.
Re: Questions from France about smoldering myeloma
Many thanks for your positive vibes multibilly. It really feels good speaking about it here in the community.
For the time being all is clear (anemia, kidney and calcium).
Will know more after MRI and keep you posted regarding bones.
For the time being all is clear (anemia, kidney and calcium).
Will know more after MRI and keep you posted regarding bones.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Terry H,
What you wrote is true. It would be normal if she is talking about the total. But if you look closely at the results the gamma monoclonal protein 3 weeks earlier was just 3.1g/l (not dL). That's why I'm unsure what the 22g is. Hopefully not a jump from 3.1 to 22 in just 3 weeks. Will have to wait and see and keep my fingers crossed.
What you wrote is true. It would be normal if she is talking about the total. But if you look closely at the results the gamma monoclonal protein 3 weeks earlier was just 3.1g/l (not dL). That's why I'm unsure what the 22g is. Hopefully not a jump from 3.1 to 22 in just 3 weeks. Will have to wait and see and keep my fingers crossed.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Maro - I need to backtrack a bit on a statement I made earlier, specifically my statement that I'm not seeing why your mother would be classified as having biclonal gammopathy.
I had been looking mainly at the numbers in the tables of the lab results you provided, without looking at some of the text that's included below those numbers. Now that I have looked at the text, I see why it might be said that your mother has biclonal gammopathy. The text clearly mentions that there are two peaks -- the largest in the beta region (9.5 g/L), and a smaller one in the gamma region (3.1g/L).
So I'm sorry for any confusion my previous posting created. I am sure I was focusing more on the table because you don't need to understand as much French to interpret the results.
I don't know enough to really offer any suggestions about the potential implications of having two clonal peaks. This really seems to be something that you or your mother will have to discuss with her physician.
I completely agree with Multibilly in regard to how effective myeloma treatments are these days. I also agree that it's important at this point to make sure she does not have any symptoms of active disease.
Good luck, and please keep us updated on how things are going with your mother.
I had been looking mainly at the numbers in the tables of the lab results you provided, without looking at some of the text that's included below those numbers. Now that I have looked at the text, I see why it might be said that your mother has biclonal gammopathy. The text clearly mentions that there are two peaks -- the largest in the beta region (9.5 g/L), and a smaller one in the gamma region (3.1g/L).
So I'm sorry for any confusion my previous posting created. I am sure I was focusing more on the table because you don't need to understand as much French to interpret the results.
I don't know enough to really offer any suggestions about the potential implications of having two clonal peaks. This really seems to be something that you or your mother will have to discuss with her physician.
I completely agree with Multibilly in regard to how effective myeloma treatments are these days. I also agree that it's important at this point to make sure she does not have any symptoms of active disease.
Good luck, and please keep us updated on how things are going with your mother.
Re: Questions from France about smoldering myeloma
Maro,
BTW, if it is a bi-clonal gammopathy, it's my understanding that this has no impact on prognosis for survival, etc..
Also, a bi-clonal gammopathy is not any more difficult to treat. It would respond the same way as a monoclonal gammopathy to drugs, etc.
BTW, if it is a bi-clonal gammopathy, it's my understanding that this has no impact on prognosis for survival, etc..
Also, a bi-clonal gammopathy is not any more difficult to treat. It would respond the same way as a monoclonal gammopathy to drugs, etc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Questions from France about smoldering myeloma
Multibilly,
Thanks for clarifying that for me. It could have been a concern, which you quickly cleared out for me.
Thanks for clarifying that for me. It could have been a concern, which you quickly cleared out for me.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Hello everyone
Got the MRI done today. The radiologist who did the MRI spoke to us afterwards and told us the entire spine and back and rest of body is clear with no bone lesions.
There is, however, some doubt on lower back left side (rachis lombaire). They find it to look a bit "salt and pepper" aspeçt. It is a zone where it is apparently not very clear to tell right now. They will look more into it and get back to us next week.
After some research I get the impression that salt and pepper is some form of micro lesions, but I am not so sure about this.
My mother has no pain, no fatigue, no loss of weight or appetite, no anemia, calcium etc etc
A friend doctor (abroad) is suggesting she will probably need treatment because the disease seems active, but I am not sure how and why we are jumping to this conclusion. But i think the sedimentation rate at 135 is getting his attention because elevated SR can means inflammation.
What are your opinions? Please advise. Thanks!
Got the MRI done today. The radiologist who did the MRI spoke to us afterwards and told us the entire spine and back and rest of body is clear with no bone lesions.
There is, however, some doubt on lower back left side (rachis lombaire). They find it to look a bit "salt and pepper" aspeçt. It is a zone where it is apparently not very clear to tell right now. They will look more into it and get back to us next week.
After some research I get the impression that salt and pepper is some form of micro lesions, but I am not so sure about this.
My mother has no pain, no fatigue, no loss of weight or appetite, no anemia, calcium etc etc
A friend doctor (abroad) is suggesting she will probably need treatment because the disease seems active, but I am not sure how and why we are jumping to this conclusion. But i think the sedimentation rate at 135 is getting his attention because elevated SR can means inflammation.
What are your opinions? Please advise. Thanks!
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Bonjour Maro, Merci pour votre poste! My French is not 'très bien', but your English is excellent! This is all very subtle, isn't it, about the progression of smoldering myeloma to active myeloma! Did your mother get the SFLC test in the tests she was having done?
Hoping you can get all of this sorted out soon.
Hoping you can get all of this sorted out soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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