[hector123]

Diagnosis help

by hector123 on Mon Sep 29, 2014 5:20 am

Hey guys,

I'm from India and wanted your help in diagnosing my mother's reports and illness.

I know it might be premature to ask you guys about your opinion without providing all the details, as we've yet to get all the test results etc. But I was just freaking out inside and finding this forum gave me strength and hope to get clarity on my doubts and concerns.

She's 60 and has been suffering from peripheral neuropathy since the past 1.5 years. Have been trying to treat her with vitamin B12 injections etc. Although she tries and takes part in day to day activities, she experiences weakness, fatigue, and shortness of breath from time to time. I think she has lost about 7-8 kgs (15-18 lbs) of weight in the last 2 years or so.

Anyway 5 days ago (last blood test was 4/5 months before, with everything normal), we took her blood test and the reports came back with a high amount of paraprotein with normal amounts of calcium and everything else.

We're taking her to a hospital where they do bone marrow biopsy etc to get all the data that we can.

With your knowledge / experience what can you tell me that could maybe more shed light on this situation?

Thanks for reading this!

Sending you lots of love

[Multibilly]

Re: Diagnosis help

by Multibilly on Mon Sep 29, 2014 7:19 am

Hi Hector,

I realize that this is a scary time for you and your mom. We've all been there.

The bone marrow biopsy will be key in telling you what is going on.

What was her paraprotein level? Did they also measure her free light chains? (please include units of measure).

In addition to her calcium levels, you want to be looking at her kidney function (particularly the creatinine level) and determine if she has anemia (look at the hemoglobin level) or not. If they haven't done one yet, the doctors will also order a full body xray (or some other imaging mode) to look for bone lesions.

Overall, the doctors will be looking at whether she meets any of the "CRAB" criteria (see link below), which will determine if she needs treatment or not (depending on whether the bone marrow biopsy confirms some stage of a monoclonal gammopathy).

This handbook may help you better understand all this:

http://myeloma.org/pdfs/Patient_Handbook_2013.pdf

Note that this could end up just being MGUS or smoldering multiple myeloma, and she could end up going through the rest of her life without needing any treatment whatsoever. Even if she does end up having symptomatic multiple myeloma and requires treatment, the treatments these days are quite remarkable and she can lead quite a good life. Things are quite different today for multiple myeloma patients than they were just a few years ago.

[Toni]

Re: Diagnosis help

by Toni on Mon Sep 29, 2014 10:32 am

Greetings Hector,

I am sorry that you have so many concerns about your mother's health. Multibilly has provided you with much helpful information to guide you through this initial time of worry and uncertainty.

I simply wanted to add that I had some of the similar problems your mother had and the blood test came back for paraprotein this past spring. As we all feel when this happens, I was alarmed! Fortunately, the good people on the Myeloma Beacon patiently guided me through and encouraged me. After having the bone marrow biopsy it was confirmed I simply have the paraprotein in my blood and I do not have smoldering or active myeloma.

I share this with you because paraprotein does not always mean myeloma, although it can. If you have the actual test result numbers it will help to start to understand where she is at, although only other tests, bone marrow biopsy and bone scans can confirm diagnosis.

Wishing you well and please do visit this forum frequently to learn more.

All the best to your dear mom.

[hector123]

Re: Diagnosis help

by hector123 on Thu Oct 09, 2014 1:06 pm

Hey guys,

Thanks so much for your helpful support and advice. Gave me much clarity and courage to pull myself through these past few weeks.

Been a hectic week ... got PET/CT and bone marrow done, amongst many blood tests.

The results in the preliminary reports seemed that its an IgM disorder, but not myeloma, as the patient history and illness symptoms aren't characterised by the typical CRAB analysis. In the bone marrow biopsy report, however, the diagnosis is for Waldenstrom's disease.

We are looking into the treatments, clinics, and research that will allow for the best treatment possible. If you have any great resource or advice, please share!

Thanks so much!

Sending love and health in my thoughts to everyone.

[Multibilly]

Re: Diagnosis help

by Multibilly on Thu Oct 09, 2014 1:40 pm

Hector,

Glad you found some benefit from the folks on the forum. See this post regarding transplant centers in India (a center that deals with multiple myeloma transplants should also have specialists that can deal with WM).

"Stem cell transplant centers in India," forum thread started Apr 21, 2014