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Re: Total confusion after diagnosis
Many thanks Multibilly for all you valuable imput. You have been able to clarify some things for me. Shall ask doc about cytogenic flags. Hopefully can gain more info on the anaemia. Just a waiting game now for next appointment. BUT ... I feel great. Cheers!
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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: Total confusion after diagnosis
Just wondering if anyone could put in laymans terms what serum free light chains are? I am IgA lambda, but I don't understand what the light chains are. 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: Total confusion after diagnosis
Hi Ailsa,
Here's a description I found about free light chain testing that may help you:
Structurally, normal immunoglobulins (abbreviated Ig) are composed of smaller units called heavy chains and light chains, and together they form a large complex (see Figure 1). There are five types of heavy chains, and each type is assigned a specific letter. These five types are abbreviated as IgG, IgA, IgM, IgD, and IgE.
There are two types of light chains, and they are referred to as kappa (κ) and lambda (λ or L). Each plasma cell produces only one type of heavy chain and one type of light chain. Altogether, there are 10 subtypes of normal immunoglobulins (see Table 1).
Table 1. Subtypes of Immunoglobulins.
IgG kappa IgG lambda
IgA kappa IgA lambda
IgM kappa IgM lambda
IgD kappa IgD lambda
IgE kappa IgE lambda
The heavy and light chains are produced separately within the plasma cells and are assembled to form a whole (“intact”) immunoglobulin. When the light chains are attached to the heavy chains, the light chains are referred to as bound light chains. However, when the light chains are not attached to the heavy chains, they are called free light chains.
For unknown reasons, the plasma cells typically produce more light chains than are required to create the whole immunoglobulins or monoclonal proteins. The excess light chains enter the bloodstream as free light chains (that is, not attached to the heavy chains). Thus, both in the normal situation and in individuals with myeloma and related disorders such as monoclonal gammopathy of undetermined significance (MGUS), excess light chains enter the bloodstream as free light chains. The amount of free light chain production is linked to the activity of myeloma or plasma cell growth.
Here's a description I found about free light chain testing that may help you:
Structurally, normal immunoglobulins (abbreviated Ig) are composed of smaller units called heavy chains and light chains, and together they form a large complex (see Figure 1). There are five types of heavy chains, and each type is assigned a specific letter. These five types are abbreviated as IgG, IgA, IgM, IgD, and IgE.
There are two types of light chains, and they are referred to as kappa (κ) and lambda (λ or L). Each plasma cell produces only one type of heavy chain and one type of light chain. Altogether, there are 10 subtypes of normal immunoglobulins (see Table 1).
Table 1. Subtypes of Immunoglobulins.
IgG kappa IgG lambda
IgA kappa IgA lambda
IgM kappa IgM lambda
IgD kappa IgD lambda
IgE kappa IgE lambda
The heavy and light chains are produced separately within the plasma cells and are assembled to form a whole (“intact”) immunoglobulin. When the light chains are attached to the heavy chains, the light chains are referred to as bound light chains. However, when the light chains are not attached to the heavy chains, they are called free light chains.
For unknown reasons, the plasma cells typically produce more light chains than are required to create the whole immunoglobulins or monoclonal proteins. The excess light chains enter the bloodstream as free light chains (that is, not attached to the heavy chains). Thus, both in the normal situation and in individuals with myeloma and related disorders such as monoclonal gammopathy of undetermined significance (MGUS), excess light chains enter the bloodstream as free light chains. The amount of free light chain production is linked to the activity of myeloma or plasma cell growth.
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JimNY
Re: Total confusion after diagnosis
Many thanks for all the explanations. It has been a great help. Have educated myself as much as possible. Oncologist appointment tomorrow. So anxious for blood results and now have some (sensible) questions to ask.
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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: Total confusion after diagnosis
Gday Ailsa,
If you are to go ahead with treatment, then you will be in store for plenty of needles. I have a needle phobia – you know, hyperventilate and generally freak out. I had a portacath (port) inserted, which makes treatment a lot easier. Canulars usually took on average 6 attempts before hitting a vein successfully. The port works first time every go. So ask for one if you require treatment.
Hopefully you won't need it.
Take care Vic
If you are to go ahead with treatment, then you will be in store for plenty of needles. I have a needle phobia – you know, hyperventilate and generally freak out. I had a portacath (port) inserted, which makes treatment a lot easier. Canulars usually took on average 6 attempts before hitting a vein successfully. The port works first time every go. So ask for one if you require treatment.
Hopefully you won't need it.
Take care Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Total confusion after diagnosis
Hi vicstir.
Are you a mind reader? I totally freak with needles. I'm such an embarrassing case, so many thanks. My veins collapse as soon as a needle comes anywhere near them, so it is always a very stressful time and I feel emotionally drained once they have my blood, it they can get it.
Yep, I'm a real big wuss and I even embarrass myself!
Are you a mind reader? I totally freak with needles. I'm such an embarrassing case, so many thanks. My veins collapse as soon as a needle comes anywhere near them, so it is always a very stressful time and I feel emotionally drained once they have my blood, it they can get it.
Yep, I'm a real big wuss and I even embarrass myself!
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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: Total confusion after diagnosis
Hey Ailsa,
Yep, I know exactly what you mean. I was like, ok, have a terminal illness, dealt with that ok. Come near me with a needle, and I fall to pieces.
Make sure you tell them (the doctors and nurses) that you have a needle phobia. My file is marked so. When and if I need procedures, they give me a Valium or something similar to calm me down.
Ask to have a port inserted. In the long run, the stress and anxiety it will alleviate is worth the little discomfort it takes to have put in. They don't miss with a port.
They told me it is not uncommon to have a needle phobia. Lol. I think they said that to make me feel better. Maybe that's standard banter for wusses everywhere. Hehe.
With any luck you won't need any of it. Good luck today at your appointment.
Yep, I know exactly what you mean. I was like, ok, have a terminal illness, dealt with that ok. Come near me with a needle, and I fall to pieces.
Make sure you tell them (the doctors and nurses) that you have a needle phobia. My file is marked so. When and if I need procedures, they give me a Valium or something similar to calm me down.
Ask to have a port inserted. In the long run, the stress and anxiety it will alleviate is worth the little discomfort it takes to have put in. They don't miss with a port.
They told me it is not uncommon to have a needle phobia. Lol. I think they said that to make me feel better. Maybe that's standard banter for wusses everywhere. Hehe.
With any luck you won't need any of it. Good luck today at your appointment.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Total confusion after diagnosis
So now I've had the oncology appointment and I'm really happy, much to the confusion of oncologist.
Paraproteins dropped another 3 points and now down to 11 g/L (0.11 g/dL). Gamma globulin dropped back to 19 (from 22). Wow. In my limited medical understanding this is great. Total protein dropped to 71 (from 84). Alphas and beta globulins NOW ALL IN CORRECT RANGE. Hurray for me! (Albumin dropped to 34 - not so good).
I understood my myeloma, IgA lambda, to be an aggressive type, but maybe, just maybe, my thorough health kick and supplements are working?
Oncologist would only agree that this is a slight improvement. He will not say much, but wants me to do another bone marrow biopsy, which I refused for the moment. Will do bloods again in a month. Can anyone tell me why the oncologist wants another BMB? I didn't like the first one done in May and am not keen to repeat the experience.
I also have another theory. I started to get sick nine months ago when a new subdivision was cut at the back of my home. During that time, I made constant complaints to the civil contractors about all the dust coming into my home. (They had to put dust monitors on site to gauge the dust. Bloody awful soil, black, worse type). It made me sick and was trigger for all doctor appointments.
In essence, could this have triggered myeloma?
Paraproteins dropped another 3 points and now down to 11 g/L (0.11 g/dL). Gamma globulin dropped back to 19 (from 22). Wow. In my limited medical understanding this is great. Total protein dropped to 71 (from 84). Alphas and beta globulins NOW ALL IN CORRECT RANGE. Hurray for me! (Albumin dropped to 34 - not so good).
I understood my myeloma, IgA lambda, to be an aggressive type, but maybe, just maybe, my thorough health kick and supplements are working?
Oncologist would only agree that this is a slight improvement. He will not say much, but wants me to do another bone marrow biopsy, which I refused for the moment. Will do bloods again in a month. Can anyone tell me why the oncologist wants another BMB? I didn't like the first one done in May and am not keen to repeat the experience.
I also have another theory. I started to get sick nine months ago when a new subdivision was cut at the back of my home. During that time, I made constant complaints to the civil contractors about all the dust coming into my home. (They had to put dust monitors on site to gauge the dust. Bloody awful soil, black, worse type). It made me sick and was trigger for all doctor appointments.
In essence, could this have triggered myeloma?
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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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