[Mobetter11]

Plasmacytoma? MGUS?

by Mobetter11 on Mon Apr 07, 2014 3:47 pm

Hello Everyone,

I've been reading, researching and ruminating over all your posts and articles in the Beacon. This has been a great source of information and inspiration. So I'll start with "Thank you".

At 47, I was diagnosed with a plasmacytoma Jan '13 after a rib resection. (Doctors removed the rib thinking I had a benign bone tumor). Two weeks later, I had an M-spike of 0.7, a negative bone marrow biopsy (BMB), and negative PET Scan. The site could not be radiated without causing heart damage, so I opted for "watchful waiting".

Over the first six months, my M spike was slowly going down. (I think it got as low as 0.3). The next 6 months it began to rise. The latest value was 1.0. I had another BMB 3 weeks ago. I have 7% monoclonal kappa plasma cells on aspirate and 100% focally on core section (whatever that means). I have another blood draw next week, but I am not scheduled to see the doctor until June.

Not sure what category I fall into now ... MGUS? Do any of these findings change anything? I assume my risk for progression is slightly higher having already had a lytic lesion?

Any and all input would be greatly appreciated!

Thanks~
Monique

[Multibilly]

Re: Plasmacytoma? MGUS?

by Multibilly on Mon Apr 07, 2014 6:43 pm

Hi Monique,

Welcome to the forum.

On the continuum of having a multiple myeloma diagnosis, MGUS is one of the better places to land It's also pretty common for markers like your M-Spike to fluctuate like they are.

But I think I'm a bit confused by the sequence of events on your original lesion (were you originally diagnosed with a lytic lesion due to multiple myeloma before you had the resection, or did they only figure this out after doing the resection?) ... you talk about "watchful waiting", but you had a rib resection, so this is confusing to me.

Putting that aside for now, assuming you have no CRAB issues (CRAB: C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions), based on a 7% plasma cell burden from your BMB and an M-spike of 1.0 g/dL, you would be classified as having MGUS.

Also note that BMB tests can be "hit or miss". That is, you can have two different BMBs done on the same day in different spots and come up with different results due to how non-uniformly the cancerous plasma cells are spread throughout your bones. So, you may have just hit a "dry spot" with your first BMB.

What other blood and urine tests are you having done besides a Serum Protein Electrophoresis (aka SPEP, which measures your M-Spike) and a BMB? Have you had all these other tests done?

http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf

Are you also getting regularly scheduled images such as a PET/CT? I would be on the lookout for additional lesions given they already found one. When are you due to get your next PET/CT?

Also, did they run a genetic analysis (FISH test, etc) as part of your BMB? Do you have any high risk genetic mutations indicated on your BMB results?

It also strikes me as a bit odd that you are getting your blood tested in April, but won't see your doctor until June? Why a two month gap between having your blood drawn and seeing the doctor? Why not just get your blood drawn and analyzed right before you see the doctor?

Lastly, is your doc a multiple myeloma specialist or a general hematologist that works with many cancers?

Sorry for all the questions ... just trying to make sure you've got all your bases covered here.

[Mobetter11]

Re: Plasmacytoma? MGUS?

by Mobetter11 on Mon Apr 07, 2014 11:33 pm

Hi Multibilly,

I know it's confusing ... I was diagnosed with a lytic lesion via chest CT. Had a bone survey done, blood work, and a urine test. The problem was the doctor did not order the proper blood work - they didn't look for an M-spike, and the urine was not 24 hour collection (protein/creat ratio was 211 mg/g and Albumin Upe Random was 100).

So they basically said it was not anything to worry about and sent me on my way despite the terrible pain I had with the broken rib. I ended up at an orthopedic oncologist who did not run any test or biopsy. He just reviewed the scan and said it was more than likely a benign tumor. They were all wrong

My current doctor is a hematologist/oncologist who specializes in multiple myeloma. I have blood drawn every 6 weeks and usually see the doctor the week after the blood work. She is out on maternity leave right now and will be back in June.

They did the genetic testing, but I have not seen that report yet. I have had all of the test in the list you sent. Most were done with my initial diagnosis.

I'm glad you are asking questions - you're thorough! I'm feeling much more confident. MGUS doesn't scare me. I wasn't sure if the BMB results changed my status. Back to watchful waiting!
Thanks MB! You are a MMM (Multiple Myeloma Master)!