I apologixe right off the bat, but I don't have actual numbers regarding my father's multiple myeloma, we have an oncologist that apparently doesn't like to "talk numbers." My father was first diagnosed in Mar 2010, after having a broken humerus in February 2010. Diagnosis was difficult, as none of the tests in the hospital confirmed multiple myeloma, but finally a 24 hr urine test confirmed it. I do have one piece of information that I squeezed out of the oncologist today, he said it is a light chain multiple myeloma. We initially treated with Revlimid, and had a "complete response" so he went on a maintenance dose. Plasmacytomas continued to "pop up" and they determined that he would benefit from Velcade, eventually stopped responding to that so they added Doxil not too long ago.
The pain in his leg began to get more severe and an MRI of the spine was done that showed multiple presence of the disease, the oncologist today determined that pain control was the best they could do for him at this point. They elect to discontinue the chemotherapy. I asked multiple questions (I am in the healthcare field, so my mind is always working), but clinical trails were dismissed as well as continuing the chemo just to slow down the progression of the disease. They seemed very quick to dismiss his case and I am wondering if I look stupid going to request a second opinion. During the course of the discussion the oncologist did note several times that things were strange in the progression of the disease and on the MRI they also noted plasmacytomas in the gluteal muscles. I walked out with a very uneasy feeling.
I guess the purpose of this post is to ask if anyone has had a similar experience or heard of presence of the disease in the muscle Or maybe I am just in denial and they know way more than I do. Looking for any advice. Thanks
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Re: To get a second opinion or not??
Hello,
It sounds as though your father has relapsed myeloma with recurrent extrmedullary plasmacytomas. This can be viewed as "aggressive" disease. There ARE options depending on his physical health and ability to tolerate treatment. As myeloma relapses it tends to become more resistant to treatment but he certainly could still respond. There are many research studies available for patients with relapsed myeloma. Some of the most promising drugs at this time are pomalidomide, carfilzomib and elotuzumab.
It can be challenging to get to and from a research center for treatment but it may be worth it as well. You and your father must decide. A second opinion at a referral center known for expertise and research in myeloma is more than reasonable.
It sounds as though your father has relapsed myeloma with recurrent extrmedullary plasmacytomas. This can be viewed as "aggressive" disease. There ARE options depending on his physical health and ability to tolerate treatment. As myeloma relapses it tends to become more resistant to treatment but he certainly could still respond. There are many research studies available for patients with relapsed myeloma. Some of the most promising drugs at this time are pomalidomide, carfilzomib and elotuzumab.
It can be challenging to get to and from a research center for treatment but it may be worth it as well. You and your father must decide. A second opinion at a referral center known for expertise and research in myeloma is more than reasonable.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: To get a second opinion or not??
Thank you Dr. Libby for the quick response. I appreciate the encouragement toward seeking a second opinion. I am hopeful that there is a clinical trial out there that may benefit him, as he is not willing to give up yet.
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