[Sister In Law]

No CRAB, but bad neuropathy led to diagnosis

by Sister In Law on Sat Oct 31, 2015 10:06 pm

My husband has an odd case. NO CRAB issues, but fairly severe neuropathy – even affecting his autonomic system. It has taken five months to finally get a diagnosis. We had a really bad doctor to start with, but just got in to see the myeloma specialist who is GREAT. A very nice man. My husband's myeloma is only 30% of his bone marrow. I am not sure, but it might be considered smoldering? BUT because he has symptoms, they do treat. The first doctor was going to do two treatments of Velcade per week and only 20 mg of dex! The myeloma specialist is doing Velcade once, Cytoxan (which he has not started yet), and dex (20 mg twice a week). It's amazing how much your choice in doctors can affect the routine.

The first doctor did not tell us that he has a good prognosis. That would have helped a lot. We asked him to test my husband for amyloidosis, but he scoffed and thought I needed counseling (seriously). My husband's sister had an aggressive myeloma and amyloidosis. Their dad had myeloma in 1995 and was treated with prednisone and Alkeran (melphalan) (only). He is alive and somewhat well at 86. Three of four of them had myeloma. Now my husband.

This new doctor said that his neuropathy (from the cancer) should get better with treatment, but he is to watch for increasing symptoms from Velcade. If he gets them, they will have to change things.

The doctor said a stem cell transplant is in the future. Is it always the best route? Is longevity that much better with transplants? He's worried. His sister did not do well, but she was in bad shape with her organs.

Thanks for advice and help.
Linda

Are there any others who got neuropathy which led to a diagnosis?

[Lindz]

Re: No CRAB, but bad neuropathy led to diagnosis

by Lindz on Sun Nov 01, 2015 3:07 pm

LInda,

I don't really have too much to offer except that I have neuropathy and no CRAB. I am still in the diagnostic journey, but mine is looking polyclonal, meaning no M spike.

Can you tell me what your husband's serum electrophoresis and immunofixation showed and his light chain analysis?

Thanks, sorry I know you were looking for answers ,and I don't have any ...

L

[Multibilly]

Re: No CRAB, but bad neuropathy led to diagnosis

by Multibilly on Sun Nov 01, 2015 4:24 pm

Linda,

I'm glad that y'all found a doctor that you are more happy with.

But the question that comes to my my mind is why would the patient start on Velcade given he has severe, preexisting PN? Why not start with a more PN-friendy drug such as Revlimid or Carflizomib?

The VA also recommends that Velcade not be used as an initial therapy if a patient has >= grade 2 PN (I'm guessing the patient must have at least grade 2 PN if multiple myeloma treatment is being initiated based on PN). See Table 4 in the linked doc below:

http://www.pbm.va.gov/clinicalguidance/clinicalrecommendations/InitialManagementofMultipleMyeloma.doc

You might also find this thread to be insightful on various specialists thoughts on Velcade vs Carfilzomib usage, given the patient's preexisting PN:

http://www.researchtopractice.com/COCMM14/1/Commentary2

Was there some compelling reason that the doctor chose to start off with Velcade?

[JimNY]

Re: No CRAB, but bad neuropathy led to diagnosis

by JimNY on Sun Nov 01, 2015 4:51 pm

Hello Linda,

Neuropathy is not a symptom that by itself can lead to a multiple myeloma diagnosis. This is true whether you are using the new diagnostic criteria for multiple myeloma that were published last year, or the older criteria first published almost 15 years ago.

The latest diagnostic criteria for multiple myeloma require the presence of the traditional "CRAB" criteria, or several additional conditions, none of which involve neuropathy. See

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

In fact, the new diagnostic criteria specifically state that neuropathy should NOT be considered a "myeloma-defining event" signalling that someone has multiple myeloma requiring treatment. This is true even if someone has MGUS or smoldering myeloma, and the neuropathy may be due to the monoclonal protein. The new diagnostic criteria state:

Peripheral neuropathy is often seen in association with monoclonal gammopathies, and in some cases is causally related to the underlying monoclonal immunoglobulin. The pathogenesis is thought to be related to the effect of the monoclonal protein (or secondary biological mechanisms) on the peripheral nerves, and can occur in patients with MGUS without need for malignant transformation. Thus, peripheral neuropathy alone is not a myeloma-defining event, and patients in whom a causal role of the monoclonal protein is suspected are regarded as having monoclonal gammopathy-associated neuropathy.

Source: SV Rajkumar et al, "International Myeloma Working Group updated criteria for the diagnosis of multiple myeloma," The Lancet, Nov 2014 (article abstract)

Are you sure your husband's new doctor is a myeloma specialist? A myeloma specialist is a doctor who sees almost only myeloma patients and patients with related diseases, such as amyloidosis or Waldenstrom's. Most myeloma specialists work out of major cancer centers and regularly publish myeloma-related research in articles indexed at pubmed.gov.

Someone who is a hematologist/oncologist is NOT necessarily a myeloma specialist. Such a doctor may see myeloma patients somewhat regularly, but they probably see many more leukemia and lymphoma patients than they do myeloma patients, and they probably are not doing myeloma-related research often, if at all.

It is entirely possible that your husband's lab results do, in fact, match the criteria for multiple myeloma, and his current doctor is absolutely correct in making that diagnosis. None of us here has as complete picture of what is going on with your husband as his doctor does. It's also possible that your husband's doctor may have mentioned multiple myeloma, but the official diagnosis in your husband's records may be something else.

To me, when you say your husband has really bad neuropathy and a monoclonal gammopathy with lambda light chains, I begin to wonder if perhaps he has POEMS syndrome.

It's also possible that he could have AL amyloidosis with neuropathy as the primary symptom.

[lys2012]

Re: No CRAB, but bad neuropathy led to diagnosis

by lys2012 on Mon Nov 02, 2015 12:18 am

How high is his M protein (M-spike)? I had very high protein and had a condition of the blood called hyperviscocity (thick blood, too much protein). My only CRAB symptom was anemia. My issue was caused partially from delayed diagnosis but in my case two years of misdiagnosis.