Gary Finds the MCC Group and Dr Nghiem

June 14, 2010. Much has happened. Through the resources and support in the MCC group, I have been in contact with Dr Ngheim of the University of Washington who is a world exoert in this disease. He was good enough to call me Saturday morning, June 12, and spent 45 minutes on the phone with me.

The good news is that I have been spared a radical neck dissection, a procedure which involves an extensive removal of lymph nodes in the neck, together with the sterno-cleido-mastoid muscle, the internal jugular vein, a nerve which supplies muscles to the shoulder and risk to other important nerves such as the vagus and the recurrent laryngeal nerve.

In addition, chemotherapy is not recommended as this is not shown to be helpful at this stage of the disease. In fact it may be detrimental as it damages the immune system which is needed to fight the viral component of thes disease.

I will need radiation treatment alone for the time being.

The bad news is that at this stage, the risk of distant disease is 50% and the risk of local recurrence is 20%.

Tomorrow, I will contact Dr Teitelbaum to cancel surgery.

I will call Dr Flam to let him know of these developments.

I will set up appointments to see Dr Ngheim for Thursday, June 24, as well as Dr Parvathaneni, the Radiation Oncologist, for June 23.

I will need to see Dr Mahdu John in Fresno on Monday or Tuesday, so he can plan the treatment under the direction of Dr Parvathaneni.

Additionally there are exciting developments having to do with tumor antigens and injections of interferon into the tumor. Dr Ngheim has suggested injecting the site where the tumor was removed from as there is likely to be residual tumor there.

I will need flights and hotel. The plan is to leave Wednesday early AM and return Friday late or Saturday.

Mt first surgical wound is healing well, but there is some edema around my ear and swelling of the incision. Little serious pain and I am off all pain meds.

I must give great credit to my son, Gary who researched out the disease and made the initial contact with the MCC group and got me connected with Dr Ngheim.

Without his help, I would still be nervously awaiting a major surgery followed by chemotherapy, all delaying the most useful treatment, radiation therapy.