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Re: Best bring a cup of tea, this is going to be long

by Multibilly on Fri May 13, 2016 8:27 am

You basically have all the key serum test results. They are just grouped together under different names.

What are the normal reference ranges for the following lab values (these should be included alongside the actual values)?:

IgG - 10.14 g/L
IgA - 0.47 g/L
IgM - 1.19 g/L

Free Light Chains
Free Kappa - 11.4 mg/L
Free Lambda - 6.7 mg/L
Kappa/Lambda Ratio - HI 1.70

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

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 13, 2016 8:44 am

Yeah, sorry, here are the results with the 'normal range' included.

Free Kappa - 11.4 (3.3-19.4) mg/L
Free Lambda - 6.7 (5.7-26.3) mg/L
Kappa/Lambda Ratio - HI 1.70 (0.26-1.65)

Free Light Chains
Free Kappa - 11.4 (3.3-19.4) mg/L
Free Lambda - 6.7 (5.7-26.3) mg/L
Kappa/Lambda Ratio - HI 1.70 (0.26-1.65)

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by Nancy Shamanna on Fri May 13, 2016 8:49 am

Hi Robin,

One quick way to see if one's test results are out of normal ranges is to check for 'H' or 'L' next to the result (high or low).

Normal ranges on my (Canadian) test results are IgG (6.80-18.00); IgA (0.60-4.20); IgM (0.40-3.00). If those are the same as your normal ranges, then the IgA would be low.

Free light chains are the measurement also known as serum free light chains (sFLC). There are two types of antibody chains that are found in the blood, that are released from antibodies. If the results are too high, it could indicate too many plasma cells in the blood. The two types are called 'kappa' and 'lambda', and a ratio of the measurements is the 'kappa/lambda ratio'. On my lab results, the normal ranges are kappa (3.30-19.40); lambda (5.71-26.30/) and for the ratio (0.26-1.65). Your results look quite normal.

Immunofixation also refers to a protein electrophoresis. This is a test where the sample is run through a gel, with an electric charge. The bands of protein may also refer to an excess of antibodies in the blood.

I hope that helps, and that you can access the normal ranges for any blood tests so that you can understand this better too!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 13, 2016 10:10 am

It does help, Nancy, thanks.

Interesting to hear my IgA is low - I did a quick search and read that that can be an indicator for celiac disease, which I'm pretty sure I have. I did ask a previous doctor for a test (he said if eating gluten bothered me, I should stop eating gluten) but am reluctant to bring it up again because my PCP doesn't like to tackle more than one issue per visit and lately my visits have all been about whatever's going on with my ribs. I'd guess that if I do have celiac disease than that would also explain why my C reactive protein is high, because that indicates inflammation, right?

But whatevs, as the kids say, hopefully the BMB will explain all.

Many thanks yet again.

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by lys2012 on Fri May 13, 2016 11:44 am

Sometimes myeloma is not so easily diagnosed, I guess! It took me 2 years to get an accurate diagnosis!

I am a patient at PMH. I initially was at a different hospital, but was referred to PMH for my stem cell transplant and asked to stay there afterwards for follow ups. It's a good hospital, but can be very busy in the clinic, with wait times that can be 3 hours plus. I'm not sure if they will see you yet without a clear myeloma diagnosis as they have so many patients

Have you had bone density testing?

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 13, 2016 12:19 pm

Hello lys2012,

Two years! I'll ease up on the complaining.

Yes, I had my first bone density test done in February right before all of this started and was told my bone density was very good. I don't have a number or score but I'm sure I can get that value next time I see a doctor.

I agree, I would imagine I need some sort of diagnosis to be referred elsewhere - I've looked at PMH's Guide to Referral Process and while they do have information about referring without department or cancer type, I figure I might as well stay in queue where I am to hear the results of the bone marrow biopsy. And a general referral like that wouldn't speed up my wait time for the myeloma clinic either, likely. I'm hoping that I'll have enough info to request a referral (or won't need one) after that.

I've heard that the wait times at PMH are Russian-novel length. I guess my husband can spend the time trying to find a parking spot.

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by Multibilly on Sat May 14, 2016 8:23 am

Hi Robin,

To summarize, you have the following:

  1. Registering a questionable IgG-Kappa band via immuonofixation
  2. The IgG portion of the above band isn't measurable on your SPEP
  3. Your IgG isn't elevated (you would expect it to be if there were significant monoclonal protein in the band mentioned in #1 above).
  4. Your kappa and lambda FLCs are normal and your FLC ratio is only just the tiniest bit out of range
  5. Your creatinine, hemoglobin, calcium and beta2 microglobulin levels are all normal.
There is the question of why you have a low IgA. Sometimes myeloma can suppress one's uninvolved immunoglobulin levels, which in your case would be the IgA and/or IgM immunoglobulin levels. But a low IgA can also be due to other conditions, as you have already pointed out.

It will be interesting to hear what the results of your bone marrow biopsy are, given your earlier imaging results.

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

Re: Best bring a cup of tea, this is going to be long

by lys2012 on Sat May 14, 2016 10:14 pm

I hope your bone marrow biopsy gives answers. Most myeloma diagnoses are more straight forward then mine. I have / had pretty classic multiple myeloma symptoms and signs, but due to my sex / age, it was not on the doctors' radar (30 year old women) I was being followed by the multiple sclerosis clinic with a diagnosis of "stress" and "we don't know what's wrong with you."

"You are fine" ended up really sick and diagnosed in the ER, not 100%, but bloodwork flagged and many other blood tests ordered, and chest xray etc, which I now know are staging tests. At my follow up a week later, I was admitted inpatient from internal medicine for bone marrow biopsy and started treatment.

I have learned that the health care system can move fast if you are critical, but until then the waiting for appointments, tests, can take for ever. Once you have a cancer diagnosis, you never really wait though, so maybe that is one perk of having cancer lol. MRI before cancer 8 months ... MRI after cancer 8 days.

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Best bring a cup of tea, this is going to be long

by RobinRosemary on Fri May 20, 2016 9:48 am

Last week, the haematologist / oncologist sat across from me and said, "So you've been told you have some form of bone cancer." Two days ago he sat down in the same place and said, "So it looks like there might not be anything wrong with you."

My bone marrow biopsy was 'completely normal'. I asked if the sample was good enough, be­cause he'd said he was unable to aspirate any marrow, and he said yes, the sample was fine. I asked about my ribs - why I would have multiple lucent spots and small fractures - and he said that ribs could break pretty easily, and that the lucent spots could just indicate healing. I asked about the low-ish IgA and he said, "Well, if you have MGUS, it doesn't always show up in bone marrow."

He also said that there was still a small chance that I could have a solitary plasmacytoma on the rib that fractured and started all this. I asked if there was any way to determine if I did have a plasmacytoma, because call me whacky but that's something I should think we would want to find out, and he said that the only way to determine that, would be to biopsy the rib itself, which was a complicated surgery. I said, "What if I want a second opinion?" and he said he could refer me to a thoracic surgeon to discuss the 'pros and cons' of a rib biopsy.

So, wow. Don't get me wrong, I am elated to hear my bone marrow biopsy was normal. How­ever, I still have a whole bag of questions that this guy wasn't willing or able to answer.

Is there a way to find out conclusively if I do have MGUS? Is a rib biopsy the only way to diag­nose a plasmacytoma? If there is a chance I have a plasmacytoma, isn't that something I should be acting on? I did ask if an MRI would find anything, but then I added, "because I'm a little concerned about all the x-rays I've been having," (I know, in the grand scheme of things it's a lesser evil, and I said that too) and then I just got a lecture on x-rays instead of an answer to my question.

I'm to see him again in three months, and the week before I see him he's scheduled the fol­low­ing tests: under biochemistry, he's ordered eGFR, sodium, potassium, chloride, ALT, alk. phos­phatase, bilirubin, a CBC, and additionally he's ordered diff. platelets, urea, ast, ldh, ggt, chloride, calcium, and protein electrophoresis, as well as a chest x-ray.

I see my family doctor today. I plan to ask him for a referral to another haematologist / oncolo­gist, because I'd like someone else to go over the test results and see if they come to the same conclusion.

What thinkest thou, Beaconites? Are there other questions I should be asking? Should I go ahead and talk to the thoracic surgeon, even if my GP isn't/won't refer me to another haematolo­gist?

RobinRosemary
Name: Robin
Who do you know with myeloma?: Undiagnosed
When were you/they diagnosed?: 51

Re: Best bring a cup of tea, this is going to be long

by Multibilly on Fri May 20, 2016 2:47 pm

Hey Robin,

I know you probably don't want to hear about more imaging, but an alternative to a rib biopsy might be to get a PET/CT. A PET/CT would light up any potentially cancerous areas in your ribs (or any other areas in your body for that matter). It's pretty dramatic and obvious the way a cancerous spot can show up on a PET/CT scan (see, for example, the image at this web page):

Also, note that even if your bone marrow biopsy procedure yielded a good aspirate, the procedure will not always catch the presence of multiple myelome in somebody with multiple myeloma. This is simply because the disease itself is not evenly spread throughout one's skeleton. So, there is a bit of luck involved in whether one hits an active pocket of disease or not.

If it were me, I would follow through with a second opinion, whether it be from another hematol­ogist (my first choice) or a thoracic surgeon. I say this because I had the opposite of your situa­tion where my first doctor and radiologist thought for sure that I had lytic lesions (detected via a skeletal xray survey) when I was first being diagnosed. But then I decided to go to another doctor and had a PET/CT performed and it was determined that I had no lytic lesions. That second doctor's radiol­ogist also reviewed my original xrays and determined that those xrays also didn't show any lytic lesions. So, I quickly learned that there is a lot of of subjective interpreta­tion when it comes to analyz­ing radiological images for issues caused by multiple myeloma, and that it pays to get more than one opinion.
Last edited by Multibilly on Fri May 20, 2016 7:28 pm, edited 1 time in total.

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

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