[hykergirl]

Multiple myeloma, thymectomy, and the immune system

by hykergirl on Sun Mar 20, 2016 3:33 pm

Scheduled next Monday to have a thymectomy with the hopes that it helps with a form of acquired neuromytonia known as Morvan's syndrome, which I was diagnosed with in October 2015 but is hypothesized I have had since my diagnosis of myeloma in 2012.

Wondering if anyone has had their thymus - which prior to puberty plays a big role in the production and maturation of T-cells, but after puberty tends to shrink and is replaced by fat -removed, and any implications removal may have with myeloma.

My concerns are by having it removed, will I further be compromising my immune system, putting me at a greater risk for infection as well as decreasing my eligibility and or efficacy of treatments with some of the newer biologic drug therapies.

Thank you,
Hykergirl

[Dr. Edward Libby]

Re: Multiple myeloma, thymectomy, and the immune system

by Dr. Edward Libby on Tue Mar 22, 2016 4:05 pm

For the greater Myeloma Beacon readership, some background ... Morvan's syndrome patients have acquired NeuroMyoTonia (aNMT), a disorder of peripheral nerve hyperexcitability that results in continuous muscle activity and symptoms of brain inflammation. They also may have an unusual sleep disorder with prolonged periods of insomnia, dysautonomia, and/or pain. A subset of patients with Morvan’s syndrome have a thymoma. Sometimes the thymus is re­moved with the hope that the symptoms will resolve.

The medical literature has no references associating thymus problems or thymoma with multiple myeloma. In addition, there is no published information regarding the response of myeloma patients to a thymectomy.

In terms of your multiple myeloma, I do not see any reason to believe that a thymectomy will have increased complications for you. I have never seen a case of Morvan’s syndrome, but I wish you a speedy recovery from the surgery and a resolution of your symptoms from this rare neurological condition.

[Shrink75]

Re: Multiple myeloma, thymectomy, and the immune system

by Shrink75 on Tue Mar 22, 2016 5:01 pm

Yes, I've had a thymectomy, due to a baseball-sized tumor which resulted in myasthenia gravis (MG). I have now been in remission from MG for 6 years. However, my neurologist fears that the methotrexate used to treat my MG may have resulted in my multiple myeloma diagnosis.

[Tishpa]

Re: Multiple myeloma, thymectomy, and the immune system

by Tishpa on Tue Mar 22, 2016 5:54 pm

I was diagnosed with myasthenia gravis (MG) in 1976. I had a thymectomy in 1977. I cannot think of any problem it caused me. Every year when I had annual physicals, my white blood cell count was below normal. It still is except when I get an infection and the count increases.

I was told my MG would never go away. Imagine my surprise when I completed my autologous stem cell transplant (ASCT) in 2013 and 8 months later (August 2014) was tested for MG and it was gone. This was mentioned as a possibility when I was at MD Anderson discussing a ASCT with a myeloma specialist.

When I had the thymectomy in 1977, it was done by a heart surgeon. Since then, the process changed but I was too early for that.

I wish you luck.