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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

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......................

majolica

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.
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

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?

majolica

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.
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

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....

majolica

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.
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

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

majolica


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