[Chubbybird]

Amyloidosis with (perhaps?) myeloma

by Chubbybird on Wed Jun 26, 2013 6:59 pm

Hello. I have not felt we'll for a few years. At Christmas I developed pericarditis and went to emerg. They noticed I have a heart condition not related to cardiovascular disease. I am being treated and investigated for amlydosis. I have been having what I think is bone and muscle pain in upper back, thighs, and upper arms. So I went specialist in Hamilton, ontario. He ran tests. One came back stating positive for IGA m-protein (mcp-1) with lambada light chain specificity. Family doctor it is nothing to worry about. Does no need further investigation. Does anyone know if I should press the issue or let it go. He treat me like I am a hypochondriac. Thank you for any suggestions u may have

[Nancy Shamanna]

Re: Amyloidosis with (perhaps?) myeloma

by Nancy Shamanna on Thu Jun 27, 2013 8:58 am

Hi Chubby Bird, I see that you are already being followed for amyloidosis, and have had the SPEP and FLC tests done (SPEP would determine what sort of immunoglobulin is present in your blood in excess quantities, and FLC looks for free floating light chains coming from same). Would this have been done because of the amyloidosis?

Because Multiple myeloma is rare, comprising only 1% of all cancer diagnoses, it is sometimes missed in the early symptom stage by family doctors. They simply don't have any experience of it. So I think that you need a referral now to a haematological oncologist to determine whether or not your blood work and symptoms of aching bones is caused by MGUS (a state which may or may not progress to myeloma), smoldering myeloma (closer to being a precursor to multiple myeloma) or the cancer itself.

I would think that because you have already been diagnosed with amyloidosis, it would be easy to convince your doctor to get a referral, or perhaps the specialist treatiing you for amyloidosis could get involved. What sort of specialist is that (internal medicine, haematology, oncologist or other?).

Hope this helps. If I were you I would pursue this matter further! You can also ask for copies of your lab results and keep a folder of them, FYI.

[Chubbybird]

Re: Amyloidosis with (perhaps?) myeloma

by Chubbybird on Thu Jun 27, 2013 4:29 pm

I have blood test result. I don't understand any of it. In notes it just says iga lambda Do not know if I have amlydosis. Did a belly biopsy. But was not done the way they show it on the Internet but we will see if anything turns up. They still don't know why I have the moderate cardiomyopathy. Family doc is not concerned at all So I guess I shouldn't be. Thank you

[Nancy Shamanna]

Re: Amyloidosis with (perhaps?) myeloma

by Nancy Shamanna on Thu Jun 27, 2013 5:03 pm

Oh, well that's good that amyloidosis is not confirmed yet. Hope you don't have either it or myeloma, but don't hesitate to post questions on the Forum since people will try to help you out here. As long as your family doctor is aware of myeloma and it's issues, he or she would refer you to a specialist if necessary!

[Chubbybird]

Re: Amyloidosis with (perhaps?) myeloma

by Chubbybird on Thu Jun 27, 2013 7:49 pm

I guess I am just curious as to whether u can test positive for iga m spike lambada and it be nothing.

[Covelo]

Re: Amyloidosis with (perhaps?) myeloma

by Covelo on Fri Jun 28, 2013 1:27 am

I have lambda type amyloidosis limited to my kidney and fat. First off I certainly hope your heart issues are not amyloid and something that is much more easily controlled or even cured. You can certainly have an M-spike and have no disease. It is called MGUS and it is sort of like a benign tumor. I was diagnosed with MGUS in 2005 and showed no symptoms until the amyloidosis showed up last year. I would not call MGUS "nothing" but it can be and the risk of progression is low but you still need to be monitored, likely for the remainder of your life. Being IgA type, I believe your risk of progression is higher but there are other factors also.

As for the amyloidosis, it can only be confirmed through a biopsy. Blood tests are not definitive for the disease. The fat pad (belly) biopsy is only definitive about 85% of the time from what I have read, and it typically is not used to determine the type of amyloidosis (hereditary, lambda or kappa light chain, AA). Have they done an echocardiogram of your heart to look at thickening of the interventricular septum or ventricular walls? This is a classic sign of amyloidosis and would suggest that a heart biopsy would be necessary. Hope it all works out for the best.

[Chubbybird]

Re: Amyloidosis with (perhaps?) myeloma

by Chubbybird on Fri Jun 28, 2013 5:10 am

Thank u so much. That makes me feel much better

[Chubbybird]

Re: Amyloidosis with (perhaps?) myeloma

by Chubbybird on Wed Jul 03, 2013 2:46 pm

Not to be a pest or anything but is an m protien spike of 4 of any significance

[Nancy Shamanna]

Re: Amyloidosis with (perhaps?) myeloma

by Nancy Shamanna on Wed Jul 03, 2013 6:31 pm

Hi Chubby, In Canada, your M spike of 4 isn't very high. (I think that in the US the same measurement would be .4). But you did have it described as IgA. tHEre is a more sensitive test called the serum free light chain test, which is used to follow myeloma patients. it seems to me that due to you being tested for amyloidosis and also having an M spike (normal blood has no M spike at all), you should probably book an app't with the hematologist who ordered these tests, for a consultation. Or if your family physician ordered them, consult with that doctor.

You can get more information free online from the Int'l Myeloma Fdn. or Myeloma Canada. I would recommend downloading 'Understanding your Blood Tests' from Myeloma Canada. Hope that helps!

BTW, I am a Canadian myeloma patient of four years. I learned a lot along the way from reading and studying, and consulting with my doctors and their nurses too!