[mdszj]

If bone damage, bisphosphonates or myeloma treatment?

by mdszj on Thu Dec 01, 2016 9:03 pm

Hi All.

I was diagnosed with smoldering myeloma in January 2105. I am IgA and as of November 7, 2016 my IgA was 1301 mg/dL, kappa / lambda ratio = 54, and kappa free light chains = 430 mg/L, and hemoglobin, calcium, and complete metabolic panel / renal analytes are all within normal range. Also, urine protein = 210 mg / 24 hours.

The odd thing (I am not complaining here) is every single one of my blood and urine markers has trended down steadily or remained constant since I was diagnosed 2 years ago. As examples: on December 12, 2014 my IgA was 1597 mg/dL and urine protein was 390 mg/24 hr. So both of these were much higher initially compared to now.

Recently I have been feeling something in my lower back. I would not call it pain or even dis­comfort, but maybe that is just the beginning of something.

It's my understanding that if bone damage were identified, I would be prescribed medicines such as bisphosphonates. However, I thought that this was a myeloma defining event, and that you would have to start the myeloma treatment, as opposed to just bisphosphonate treatment.

Any thoughts on this would be appreciated.

[Multibilly]

Re: If bone damage, bisphosphonates or myeloma treatment?

by Multibilly on Fri Dec 02, 2016 7:38 am

Hi mdszj,

A bone-related myeloma defining event is defined as having more than one focal lesion on an MRI that is at least 5 millimeter or greater in size and not simply as "bone damage". It would be up to the discretion of the specialist looking at your overall health picture and the degree and type of bone involvement (if any, in your case) as to whether to initiate drug treatment beyond a bis­phosphonate or not.

I would suggest contacting your oncologist about this new development and ask about getting either an MRI or PET/CT along with a DEXA scan to first identify if you are experiencing any lytic lesions, osteopenia and/or osteoporosis and to take it from there on the best course of action.

Hope this helps a bit.

[mdszj]

Re: If bone damage, bisphosphonates or myeloma treatment?

by mdszj on Sat Dec 03, 2016 9:40 am

Thanks Multibilly.

I guess you are correct, it seems like the decision would be on a case by case basis, since everyone is different.

[jhorner]

Re: If bone damage, bisphosphonates or myeloma treatment?

by jhorner on Wed Dec 07, 2016 3:04 am

Hello,

I would just like to comment that my involved immunoglobulin had decreased as a smoldering patient. It started out at about 1200 and went down to about 700 before I started IVIG. My intact IgG is currently about 200. I believe the reason for this is because I no longer make any normal IgG. The only IgG I have is abnormal. The IVIG provides me with enough normal IgG to create a pseudo immune system so I can continue to watch and wait:)

My IgM and IgA are also low. I have the type of myeloma that suppresses your immune system I guess. I have a friend who also has myeloma and her involved immunoglobulin was really low at diagnosis as well.

Best
J

[mdszj]

Re: If bone damage, bisphosphonates or myeloma treatment?

by mdszj on Wed Dec 07, 2016 7:14 pm

Hi jhorner,

Thanks for the response.

How can you tell that your IgG is no longer normal? I thought that when they do an immunoglobulin test, it is for the total of normal and abnormal immunoglobulin.

Is IVIG a synthetic form of IgG?

[jhorner]

Re: If bone damage, bisphosphonates or myeloma treatment?

by jhorner on Thu Dec 08, 2016 11:24 am

Hello Mdszj,

There's a simple formula for determining "normal" levels of involved immunoglobulin. You take your total IgG from your quantitative immunoglobulins and then you subtract your IgG from your immunofixation (monoclonal).

IgG = 1435 mg/dL
M-spike = 1.13 g/dL = 1130 mg/dL

So 1435 - 1130 = 305

So 305 is my "healthy" (polyclonal, rather than monoclonal) IgG, which qualifies me for IVIG, which is an infusion of IgG immunoglobulins from pooled plasma from over a 1000 blood donors. It is truly remarkable, and I'm so fortunate to qualify for this because it was life altering for me having been so sick with infection from the smoldering myeloma. I have all my testing done the day of IVIG right before infusions so that the tests show my likely IgG level without IVIG.

Worth mentioning is that this was only showed to me after I changed oncologists from a regular hematologist oncologist to one that specializes only in blood malignancies. I went to the first doctor for 3 years complaining of illness and he never knew I was low on immunoglobulins and kept telling me it wasn't the myeloma causing me to be sick. All he considered was a stable M-spike when assessing my condition. Good Luck.

Best
J