[majolica]

lucencies

by majolica on Mon Aug 15, 2011 12:54 pm

Hello,
I am new to this site and I have several questions. First, I have IgG lambda mgus and (AVWD).
My m-spike has remained stable. I have had 2 bone surveys. One in 2006 & one in May 2011. My questions are...Can a dominant lesion in the humerus and multiple bone lucencies throughout the body remain stable without any kind of treatments? Could my Vit d supplements have kept them stable? Was also told I have bad osteoporosis.

[majolica]

Re: lucencies

by majolica on Thu Aug 18, 2011 3:31 pm

Boy......I seem to stump everyone in the medical industry! What can I say? I am very complicated and not a sole on this planet seems to have any answers. Life goes on......................

[Dr. Ken Shain]

Re: lucencies

by Dr. Ken Shain on Thu Aug 18, 2011 5:04 pm

Most importantly it appears that everything has remained stable in your case, including your paraprotein (M-spike). It is also difficult to comment without seeing your skeletal survey. Myeloma-induced lytic lesions would not typically remain stable over the 5 years that you have been followed. Further, by definition a patient with multiple lesions (i.e. active disesae) should receive therapy. That being said, in some cases a bone survey may reveal "lucencies" that are not related to myeloma. As you stated in some cases they may be associated with osteoporosis/osteopenia or benign skeletal problems and are frequently sclerotic in nature. More specific imaging may help with this including MRI or PET/CT scans.

Although not a term used frequently today, some patients have an "indolent myeloma". In these cases, the only sign of active disease may be a small boney lesion that can remain stable for a prolonged period of time.

Again, the most important issue is that your disease remains stable and treatment does not appear to be necessary at this time. Without seeing your films I would not say for sure in to which camp you fall. However, the MGUS levels of percent bone marrow plasma cells and serum M-spike suggest these are non-myeloma lesions (related to something else). Therefore, active surveillance remains the management of choice. However, I would recommend that you continue to follow-up regularly (every 6 -12months). If you remain concerned (and I always recommend), you should seek an additional opinion at an acedemic center/center of execellance with myeloma a specialist.

[majolica]

Re: lucencies

by majolica on Fri Aug 19, 2011 11:28 am

Thank you Dr. Shain for your response. I appear to be very complicated in that I have also developed Acquired Von Willebrand with 8% factor VIII. Both the mgus and the AVWD was diagnosed at the same time 5 years ago. I also have alot of bone pain...which has never been explained for as well. There is only IVIG and steroids used in emergencies due to fact I do not get a response from any factor replacements. My labs have confused everyone. I also have alot of symptoms and had only one bone marrow biopsy in 2006. I have asked about another BMB and was told that would not make much difference. What is your thoughts on this?

[Dr. Ken Shain]

Re: lucencies

by Dr. Ken Shain on Mon Aug 22, 2011 12:15 pm

The diagnosis of MGUS and aVWD/syndrome was not likely a coincidence. The paraprotein being produced by the myeloma cells (Plamsa cells) is most likley the culprit. It a known, but rare complication of plasma cell disorders including MGUS and myeloma. However, aVWD by itself does not necessitate therapy. I would continue your use of IVIG for emergent bleeding issues or surgeries.

After 5 years of disease, I would recommend a restaging including BMBx (bone marrow biopsy). But that is my opinion.

[majolica]

Re: lucencies

by majolica on Mon Aug 22, 2011 1:36 pm

Thank you Dr. Shain!
I agree with you 100% that the AVWS is from the mgus. I have alot of symptoms...which is why I am seeking some more answers. The doctor won't do another BMB. Maybe because I did have bleeding complications from the first one.
Thanks again....

[Dr. Ken Shain]

Re: lucencies

by Dr. Ken Shain on Mon Aug 22, 2011 7:09 pm

I do believe that as long as you're disease remains stable it is not imperative that you undergo restaging with bone marrow biopsy etc. The bleeding risk is a reality when it comes to any kind of procedure. However, if you remain unsure or skeptical, I always recommend seeking a second opinion(or third etc.). Referrals and consultations are important part of patient care.

[majolica]

Re: lucencies

by majolica on Tue Aug 23, 2011 9:39 am

Thank you so much Dr. Shain for taking the time to respond. It means alot since I have had such a difficult time. I just could never understand why I feel so ill. Thanks again.

[majolica]

Would the treatment plans be different for me?

by majolica on Fri Aug 26, 2011 2:27 pm

I hope you don't mind me asking a couple more questions regarding my unusual mgus. Would the treatment plan be different for a myeloma patient that has the acquired von willebrand syndrome( bleeding problems)? Do the drugs have a affect on the bleeding condition itself? Making it worse. How many patients have you seen with this bleeding condition?? How was there outcome? Just normal meds have a blood thinning affect, so I am thinking chemo drugs would make my condition worse. Thanks