[Multibilly]

Newly Diagnosed...Thoughts on Treatment or to Monitor?

by Multibilly on Tue Nov 20, 2012 12:20 am

I was just diagnosed last with Stage 1 symptomatic (although my doc has asymptomatic written on the report) multiple myeloma. I'm 56. Key labs results are 1.63 g/dL Mprotein, 11% plasma concentration in bone marrow biopsy, and a handful of small lesions from skeletal survey (which is why I call it sympomatic). I am not feeling any ill effects from the disease whatsoever and feel great..

I just got my chromosome tests back today, and it was negative for IGH rearrangements, deletions for RB1 and p53 and AMP 1q21 SKS1B and therefore interpreted to that "no clonal abnormalities were detected". FISH showed no "adverse prognostic indicators, the absence of 13q14 deletion, 17p13 deletions and certain 14q32 (IGH rearrangements. It was therefore interpreted to be "negative for plasma cell neoplasia". At this point, all I have from my doc is a message that "all is good with these results". Do these results now put me in a "Normal" prognosis category?

My diagnosing oncologist said to just monitor the disease at this stage and to re-check me in 3 months. However, I am currently setting up an appointment with the University of Colorado director of transplants and myeloma specialist. My question before seeing him is whether it is standard procedure to monitor the disease at this stage or do people start to routinely get treated at this stage. If one does get treated at this stage, what is the usual first course of treatment? If one does wait until the diseases progresses, what is threshold of one of the particular results above that then warrants treatment?

Last edited by Multibilly on Thu Dec 13, 2012 10:58 pm, edited 1 time in total.

[smithwcs]

Re: Newly Diagnosed...Thoughts on Treatment or to Monitor?

by smithwcs on Tue Nov 20, 2012 2:21 am

Hello,

Have you had your Free Light Chains (FLC) checked ? While the M protein is certainly something to keep an eye on, depending on the specifics of your disease, the FLC and FLC K/L ratio is a good sensitive indicator of the progression of multiple myeloma in most people.

I diligently have multiple myeloma labs including a check of my FLCs performed every month. I would speak with your oncologist on the need to do that routinely. Blood calcium and indication of kidney function like checking creatinine levels is important also.

Since I am not a doctor, I hesitant to recommend any treatment . But I would suggest that the more that you know about your specific symptoms and characteristics of your disease, the more you can zero in on what test indicators and treatment options you should focus on the most. Also googling the internet can provide you with a lot of information that can serve as a second opinion for critical decisions you might have to make down the road. I wish you well.

[Multibilly]

Re: Newly Diagnosed...Thoughts on Treatment or to Monitor?

by Multibilly on Tue Nov 20, 2012 10:03 am

Thanks for the response. Yes, I had complete serum, urnie and bone marrow tests done. Below are the results of the labs you asked about. I also had a full skeletal survey done that surface some "small lytic lesions". We are monitoring quite a few factors including all that you mentioned .I'm just trying to understand just which combination of these factors (and at what levels) merits starting a treatment program? I'm having a hard time finding a "cookbook" on the internet that leads me through understanding just when a specific combination of factors at some specific set of thresholds warrants a specific treatment. I'm just trying to get smarter on all this as I prep for getting a second opinion with a myeloma specialist and I wont see my original diagnosing doc for another 3 months. I'd also hate to hear down the road like "...if you had only started x treatment when you were first diagnosed".

Free Kappa/Lambda with K/L ratio, serum
Kappa light chain, free serum mg/dL 11/1/2012 0.64 0.33 - 1.94 Normal
Lambda light chain, free serum mg/dL 11/1/2012 9.1 0.57 - 2.63 High
K/L light chain ratio, free, serum 11/1/2012 0.07 0.26 - 1.65 Low

Last edited by Multibilly on Wed Nov 21, 2012 10:46 am, edited 2 times in total.

[terryl1]

Re: Newly Diagnosed...Thoughts on Treatment or to Monitor?

by terryl1 on Tue Nov 20, 2012 11:47 am

Hi, you indicate that you have bone lesions which were identified in a skeletal survey. This clearly implicates the CRAB criteria for symptomatic myeloma if they are myeloma-related lytic lesions. Also, radiographic skeletal surveys (x rays), usually only show lesions when there is more than 30% bone destruction. A PET CT or MRI (more advanced imaging modalities) might be better at showing exactly what you face. Bottom line---see a myeloma specialist ASAP.

[Dr. Jason Valent]

Re: Newly Diagnosed...Thoughts on Treatment or to Monitor?

by Dr. Jason Valent on Tue Nov 20, 2012 6:44 pm

If the lytic lesions on skeletal survey are concerning for myeloma, then treatment should be initiated. The complicating issue can be that veins in the skull can sometimes look like lytic lesions. If there is any question about whether or not the lytic lesions are from plasmacytomas, then a biopsy could be performed of one of them. Another option is to use PET scan imaging to better define if they are plasmacytomas.

[Multibilly]

Re: Newly Diagnosed...Thoughts on Treatment or to Monitor?

by Multibilly on Wed Nov 21, 2012 10:52 am

Dr. Jason Valent wrote:
> If the lytic lesions on skeletal survey are concerning for myeloma, then
> treatment should be initiated. The complicating issue can be that veins in
> the skull can sometimes look like lytic lesions. If there is any question
> about whether or not the lytic lesions are from plasmacytomas, then a
> biopsy could be performed of one of them. Another option is to use PET
> scan imaging to better define if they are plasmacytomas.
Thanks Dr. Valent. I will request more tests. The xray report specifically stated "small lytic lesions are present in the frontoparietal calvairum bilaterally and the distal right radius, suspicious for mutliple myeoma". Can veins or other objects in the radius also masquerade as lytic lesions?