[yemesrach]

Active myeloma, but not treated

by yemesrach on Sat Oct 25, 2014 11:07 am

My father has been diagnosed with kappa light chain multiple myeloma in June 2014. At the time, we were told that he has elevated serum kappa / lambda free light chain ratio of 2.02 and 10-20% clonal plasma cells that are restricted after bone marrow aspirate. He was told that he has some bone lesions in the skull, femurs and light acromion. The oncologist advised him to do immediately chemo. All other things were all ok including m-spike.

We decided to do a second opinion with a multiple myeloma specialist this time around to confirm his diagnosis and treatment plan. The specialist looked at all the results and did acknowledge the problem, but did not agree on the severity of the problem – the x-ray result in particular, that the skull does not have lesions. He suggested nonetheless taking Zometa but not chemo and watch for now.

We came back and we did not do much except working on his nutrition since June until October.

We went to see this week the first doctor to discuss with him the treatment plan after all this.Then, he did blood test and we realized that his kappa/lambda ratio continues to be elevated to 2.45, but the total protein (urine) declined from 32 to 6 and now in normal range. He gained 4 pounds since; and now they see IgA monoclonal protein with kappa light chain.

Despite all this, he concluded that the specialist was right in recommending only to deal with the bone lesions this time and wait for few months to see how the disease progress.

I would like to ask if you have come across such a situation and if it is a good idea to wait and do nothing. This looks like for me an active myeloma, but the doctors are suggesting not to treat it. I thought active myeloma needs to be treated immediately.

Please advise me if my understanding is correct.

[Multibilly]

Re: Active myeloma, but not treated

by Multibilly on Sat Oct 25, 2014 1:57 pm

When I was first diagnosed, there was a difference of opinion regarding my original skeletal survey (xray). My first radiologist indicated I had lytic lesions. Yet, upon getting a second option from a second doctor, his radiologist could not find any lesions. Upon the recommendation of the second doctor, both of the doctors then agreed that it made sense for me to get a PET/CT (and a DEXA scan to see if there was any general bone damage such as osteopenia or osteoporosis) to end the debate. The PET/CT showed no sign of a lytic lesion and my DEXA showed that I had very healthy bone density.

So, I might suggest a PET/CT to verify if there are indeed lytic lesions present or not.

[FingersCrossed]

Re: Active myeloma, but not treated

by FingersCrossed on Mon Oct 27, 2014 9:21 am

Do you know if there is any heightened risk / danger to getting these scans one right after the other? I've had my bone survey and I have a script/order for a DEXA scan. When I meet with the specialist, I am going to ask if I should get an MRI or PET/CT as well just to make sure there are no lesions. Is there any harm in getting all of these scans done?

[Multibilly]

Re: Active myeloma, but not treated

by Multibilly on Mon Oct 27, 2014 9:48 am

FC,

You may want to read this great article on the subject of imaging.

Dr. Prashant Kapoor, "To PET or not to PET," Beacon forum posting, Jul 24, 2014.

Note that you want to only use PET/CTs sparingly as they expose you to quite a bit of radiation. I'm not sure it makes any difference if you get a skeletal survey and a PET/CT back-to-back or spread them out over a period of months, since what one typically cares about is cumulative lifetime exposure or the magnitude of radiation exposure at any instant in time (although I may be wrong on this point, so please check with your doc).

You may get lucky and have access to a full-body MRI (which involves no radiation), but chances are that you won't. So, if you go the MRI route, you likely would only be able to get your spine imaged.

DEXA scans use pretty low levels of radiation.