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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Re: Lambda FLC very high; has my MGUS progressed?

by Foundry738 on Thu May 24, 2018 2:44 pm

I believe a PET/CT scan is pretty typical in suspected multiple myeloma. It can pinpoint any localized, active cancerous areas in the bones and elsewhere. Such activity, which may not present any overt symptoms, can still trigger a decision to start treatment.

Best of luck

Foundry738
Name: Biclonal
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2016
Age at diagnosis: 67

Re: Lambda FLC very high; has my MGUS progressed?

by K_Shash on Thu May 24, 2018 2:49 pm

Hi Jessitaylor,

These are almost exactly the same tests (including ruling out amyloidosis and the 24-hour urine test) my oncologist / hematologist had me go through in early December 2014 before concluding that I needed induction therapy.

However, I do not understand the waiting period of 4 weeks, till June 20. It may be that your on­colo­gist wants to get your cytogenetics results. I do recall that that took some time after the biopsy. My treatment was started right after the bone marrow biopsy confirmed the 30% plasma cell level and I was told that had "trisomies only" multiple myeloma after a few weeks.

All in all, your hematologist / oncologist seems to be following the same guidelines that my oncolo­gist did before starting my induction therapy. I was very anxious to start my treatment, though since my kappa was around 1,070 mg/L (3.3 - 19.4 normal range) and my kappa-lambda ratio at 186 (normal range 0.26 - 1.65). I had no doubt that my IgG kappa myeloma needed to be treated, and I could not understand why my oncologist was putting me through so many tests.

All the best.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: Lambda FLC very high; has my MGUS progressed?

by jessitaylor on Thu May 24, 2018 4:21 pm

K,

How long did it take to get the bone marrow result back? Do you remember at all?

Thanks,
Jessi

jessitaylor

Re: Lambda FLC very high; has my MGUS progressed?

by K_Shash on Thu May 24, 2018 6:47 pm

Hi Jessi,

I don't exactly remember when my bone marrow biopsy was done, but it had to be a few days before my first Velcade shot on December 17, 2014. The cytogenetic analysis was reported on Jan. 5, 2015. My guess is that it took 4 weeks for the cytogenetics, but the 30% plasma cell level (reported within a couple of days of the bone marrow biopsy) was enough, with the high kappa and kappa-lambda ratio, to get the Revlimid, Velcade, and dexamethasone (RVD) induction treatment going.

My multiple myeloma was discovered accidentally. My routine annual blood tests had shown a high protein in the urine in early November of 2014. The urine test was 'normal' in 2012, though. The further tests showed the high kappa free light chain levels later that month. I have kappa light chain multiple myeloma. I was quite anxious to start my treatment.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: Lambda FLC very high; has my MGUS progressed?

by Multibilly on Thu May 24, 2018 9:35 pm

Hi Jessi,

To me, it seems like your doctor is being quite thorough and that you have a lot of test results for him / her to interpret in the coming weeks. Like K_Shash, I am surprised that it will take so long to get your test results, but maybe that's just how it works up in Canada.

There are some other excellent Canadians on this forum who might be able to offer some additional insights into the Canadian de rigeuer for turning around lab results. In my case in the USA, I have been able to get the results of bone marrow biopsies, including iFISH results, in about a week.

Wishing you the best of results.

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

Re: Lambda FLC very high; has my MGUS progressed?

by Nancy Shamanna on Fri May 25, 2018 9:15 am

Hi Jessi,

It sounds like you are being very thoroughly investigated for myeloma / amyloidosis. As a previous person posted, are you getting also a PET/CT scan? I live in Canada and so far have had annual skeletal X-ray surveys. If you have to wait until June 20 for the results of your marrow biopsy, that is probably since that is the next regular appointment with the oncologist. Where I live, we do not have a 'patient portal' to look at lab results before an appointment. You could always phone the doctor's clinic and ask if you can get results on the phone about the biopsy, though.

My results from a bone marrow biopsy back in November 2009 reported on the aspirate, the bone marrow, and some cytogenetics were done. There were about 14 different cell types, comments from the pathologist, a count of how many cells were examined, and more. It was quite a detailed report, and I did go over it with my oncologist. I would not have understood the results otherwise!

However your lab results are presented, I think it is a good idea to save copies of them for compari­son in the future and also so that you can study them and learn more about the disease.

Good luck with everything!

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

Re: Lambda FLC very high; has my MGUS progressed?

by jessitaylor on Sat May 26, 2018 8:20 am

Thanks, Nancy.

I do have access to my blood results, even the free lights assay, as I live in Ontario. I already know the ECG was normal, but that's all I know at this point. I have not had the X-ray suggested by other members, I will ask about this.

My result review by my doctor is because that is the follow-up date in the cancer clinic. My doctor said it would take at least 3 weeks for some of the testing.

It is a challenge understanding why all this is abnormal, a microbiology lesson at my age (61),
but knowledge is power.

It seems like a very long time to find out, but maybe the results will come in early and I will have a preview before the actual appointment with the oncologist/hematologist.

What was your diagnosis?

jessitaylor

Re: Lambda FLC very high; has my MGUS progressed?

by Nancy Shamanna on Sat May 26, 2018 3:09 pm

Hello Jessi,

It's interesting to know that you have access to your lab results in Ontario. I can't know from province to province about that. I live in Alberta. I think that perhaps one reason why the bone marrow biopsy results do take a while is due to the cytogenetic testing, and also the availability of the pathologist, but that's just guess work on my part!

I actually have had at least three marrow biopsies, once at diagnosis, and then one after the induction therapy (November 2009) and another one after my stem cell transplant in 2010. The first one was the one where cytogenetics could be tested, since I had a high percentage of mutant plasma cells, about 50% I think, although i don't seem to have a copy of that test.

My diagnosis was stage 3, since I had fractured vertebrae, and a high monoclonal value of 58. The marrow biopsy just confirmed the diagnosis, which we pretty much already knew. We didn't have serum free light chain testing here at that time, although we do have that now.

Yes, this all revived my interest in microbiology, which was my major for my B.Sc. degree! Wishing you good luck and hope the results are good too from your biopsy.

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

Re: Lambda FLC very high; has my MGUS progressed?

by jessitaylor on Sat May 26, 2018 11:32 pm

Thanks Nancy.

I'm in Ontario, I believe online results for lab testing is only available in Ontario and British Columbia so far.

jessi

jessitaylor

Re: Lambda FLC very high; has my MGUS progressed?

by jessitaylor on Wed May 30, 2018 10:46 pm

New test added, a skeleton X-ray on Friday.

Maybe the bone marrow results came in and he is making sure there are no lesions. It seems like the logical next step.

I have access to see all my lab results, but it takes about 10 days to be added to my history. Nothing yet. Waiting is tough.

Staying busy, educating myself as much as I can so I know what to expect.

Jessi

jessitaylor

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