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Total confusion after diagnosis

by Ailsa on Fri Aug 29, 2014 10:09 pm

I live in Queensland, Australia. Approximately four months ago I was diagnosed. My only symptoms are of feeling unwell since the start of the year.

Bone marrow biopsy (BMB) and blood results showed IgA lambda paraprotein (M-spike) 16 g/l (1.6 g/dL). Serum albumin 36 g/l, beta 2 globulin 5.

Oncologist advised that they would like to begin treatment, but just wanted to check that my anaemia was not due to myeloma.

Next visit to oncologist delayed three weeks due to catching the flu, but did have bloods done prior to next visit.

Paraprotein down to 14 g/l (1.4 g/dL), serum albumin 42 and beta 2 globulin 4 (although beta 1 globulin rose from 4 to 6).

Oncologist advised that changes were due to slight fluctuations that arise during time of day that blood was taken and not to get too excited.

So now I am really confused as he also advised that they would not be starting treatment. But this made me really happy!

Is a healthy diet and giving up smoking making me better? Or am I being naive and should I realise that it is just fluctuations?

Great to find this forum.

Regards to all
Ailsa :D

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

by Multibilly on Fri Aug 29, 2014 11:15 pm

Hi Ailsa,

Your markers will fluctuate over time. That's normal. You need to look for big changes or developing trends in your markers over time.

By the way, what was your plasma cell % from your BMB? Have you had a full body x-ray or PET/CT?

Treatment for multiple myeloma usually doesn't begin until you are determined to be "symptomatic". Being symptomatic includes having one or more "CRAB" symptoms due to multiple myeloma, where CRAB is:

[C] Calcium elevation in the blood serum. Calcium >10.5 mg/l or upper limit of normal
[R] Renal insufficiency S. Creatinine > 2 mg/dl
[A] Anemia Hemoglobin < 10 g/dl or 2 g < normal
[B] Lytic bone lesions or osteoporosis

It sounds like your doc thought you might first have had anemia (the "A" in CRAB) due to multiple myeloma, right? But maybe your doc later determined that your anemia was not due to the multiple myeloma?? It sounds like you will have a chance to talk to your doctor soon to confirm this?

You aren't going to cure yourself by eating better and stopping smoking, but doing so will definitely help your body deal with the disease and potentially slow its normal progress.

Note that it's really helpful if you also include the units of measure (and normal reference ranges) when you talk about your lab values ;-)

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Total confusion after diagnosis

by Boris Simkovich on Sat Aug 30, 2014 12:11 am

Hello Ailsa, and welcome to the forum. You'll find that you're not alone here in terms of there being a number of other forum members from Australia.

You've gotten some excellent advice and input from Multibilly. What he is generally suggesting you do is clarify with your doctor whether you have smoldering myeloma (asymptomatic myeloma) or multiple myeloma (symptomatic myeloma). The "CRAB" criteria he described are key to establishing which of the two you have.

You can find a description of the criteria distinguishing between smoldering myeloma and multiple myeloma (and between them and a related condition known as MGUS) in the "Diagnostic Criteria" section of the Wikipedia article on multiple myeloma

http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria

If your doctor determines that you have smoldering myeloma, then lab results such as your plasma cell percentage (from your bone marrow biopsy), serum free light chain levels and ratio, and M-spike (paraprotein) level will give some insight into what your risk is of progressing to symptomatic myeloma.

This is important to understand because not all smoldering myeloma patients progress to multiple myeloma. Many smoldering myeloma patients can remain asymptomatic for a very long time ... sometimes forever.

Best of luck to you, and please let us know how else we can be of help.

Boris Simkovich
Name: Boris Simkovich
Founder
The Myeloma Beacon

Re: Total confusion after diagnosis

by Ailsa on Sat Aug 30, 2014 3:09 am

Many thanks for your comments. Sorry if I put the figures down incorrectly. None of it has been explained to me and I am not from a medical background. I'm just doing a crash course in myeloma education.

In response to Multibilly, CD138 15% plasma cells. Not sure what CD138 is, but I'm sure your more educated on this horrible stuff. Iron is 6 (previous 7), serum ferritin assay 423 (up from 372), transferrin saturation 9 (down from 12).

I shall continue to do all the right things. Just thought I may be winning when oncologist put back treatment. That to me is a great step in itself. It's just that I don't cope well with needles and hospital procedures. I'm just a wuss.

Regards to all,

Ailsa

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

by Multibilly on Sat Aug 30, 2014 7:35 am

CD138 is an antigen (protein) that is commonly found on the surface of multiple myeloma cells. The big takeaway here is that you have 15% plasma cell involvement, so you are at least at the smoldering multiple myeloma (asymptomatic multiple myeloma) stage since you also have an M-Spike (presence of paraprotein in your blood). This is the stage I am at.

Whether you develop one or more CRAB symptoms associated with multiple myeloma would determine if you would be re-classified as having symptomatic multiple myeloma and would require treatment.

I'm not qualified to comment on whether your iron numbers suggest anemia associated with multiple myeloma or not (but these iron lab numbers do provide important clues to a doctor regarding the type of anemia you are dealing with). It would probably be helpful to others to also include your hemoglobin (Hb or Hgb) level in this post.

Getting back to an earlier question, did you have a full body x-ray or PET/CT to look for bone lesions?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Total confusion after diagnosis

by Ailsa on Sat Aug 30, 2014 7:29 pm

Regarding Multibilly's query - haemoglobin 107. No PET scan, but skeletal survey and CT scans. Doctors advised all ok. I would have though that the anaemia would have been caused by the myeloma, but the fact that oncology has cancelled treatment would indicate not.

Hmmm. Confusing.

Thanks heaps Multibilly for explaining some of this to me. Greatly appreciated. :D

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

by Multibilly on Sat Aug 30, 2014 7:35 pm

Also, note that for mm-related anemia to "officially" be considered a symptomatic CRAB condition, it must meet the following:

[A] Anemia Hemoglobin < 10 g/dl or 2 g/dl < normal

In Aussie terms, this is < 100 g/l or 20 g/l < normal.

Again, this is why it's important to include the units of measure and normal reference ranges that are in your lab report ;-) Different labs use different reference ranges.
Last edited by Multibilly on Sat Aug 30, 2014 7:42 pm, edited 1 time in total.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Total confusion after diagnosis

by Ailsa on Sat Aug 30, 2014 7:41 pm

Thanks Multibilly. Am understanding that if my haemoglobin drops below 100 it would be classed as symptomatic? Doesn't make sense to me. I am a meat eater (even lived with a butcher a few years ago) and have never had any iron issues before. Cheers.

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

by Multibilly on Sat Aug 30, 2014 7:52 pm

There are different kinds of anemia. Putting aside your multiple myeloma condition, even folks that regularly consume iron can suffer from anemia, depending on the kind of anemia they have. I'm really not qualified to comment further than that.

At this point, both you and I are totally guessing why your doc is not recommending treatment and whether your low hemoglobin is due to the multiple myeloma or not. I'd just be happy that you currently are not on the hook for starting treatment and wait to see what you doc has to say ;-)

Also, remember that if you are smoldering, you could very well smolder for the rest of your life and never be any worse for having this disease.

BTW, when you see your doc, you should also ask if there were any cytogenetic (genetic mutation) flags that popped up when you had your BMB. It's good and important to understand this as well.

Wishing you all the best.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Total confusion after diagnosis

by Multibilly on Sat Aug 30, 2014 8:12 pm

I'm also saying that IF your hemoglobin drops below 100 g/L (or drops below 20 g/L from the low end of your normal reference range) AND it has been determined that your anemia is due to multiple myeloma (you haven't been told that yet), then you would officially meet the "A" in "CRAB" and you would be classified as being symptomatic, which usually means time to start treatment.

But also remember that your doc can use some discretion in determining when to start multiple myeloma treatment based on your overall medical picture.

Again, there are some big unknowns here that only your doc is going to be able to clear up regarding his decision not to start treatment. I would be happy in any case.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

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