Create successful ePaper yourself
Turn your PDF publications into a flip-book with our unique Google optimized e-Paper software.
Posted by docshu at 10:54AM (-07:00)<br />
Gary Finds the MCC Group and Dr Nghiem<br />
Saturday, July 24, 2010<br />
June 14, 2010. Much has happened. Through the resources and support in the MCC<br />
group, I have been in contact <strong>with</strong> Dr Ngheim of the University of Washington who is a<br />
world exoert in this disease. He was good enough to call me Saturday morning, June 12,<br />
and spent 45 minutes on the phone <strong>with</strong> me.<br />
The good news is that I have been spared a radical neck dissection, a procedure which<br />
involves an extensive removal of lymph nodes in the neck, together <strong>with</strong> the sternocleido-mastoid<br />
muscle, the internal jugular vein, a nerve which supplies muscles to the<br />
shoulder and risk to other important nerves such as the vagus and the recurrent laryngeal<br />
nerve.<br />
In addition, chemotherapy is not recommended as this is not shown to be helpful at this<br />
stage of the disease. In fact it may be detrimental as it damages the immune system<br />
which is needed to fight the viral component of thes disease.<br />
I will need radiation treatment alone for the time being.<br />
The bad news is that at this stage, the risk of distant disease is 50% and the risk of local<br />
recurrence is 20%.<br />
Tomorrow, I will contact Dr Teitelbaum to cancel surgery.<br />
I will call Dr Flam to let him know of these developments.<br />
I will set up appointments to see Dr Ngheim for Thursday, June 24, as well as Dr<br />
Parvathaneni, the Radiation Oncologist, for June 23.<br />
I will need to see Dr Mahdu John in Fresno on Monday or Tuesday, so he can plan the<br />
treatment under the direction of Dr Parvathaneni.<br />
Additionally there are exciting developments having to do <strong>with</strong> tumor antigens and<br />
injections of interferon into the tumor. Dr Ngheim has suggested injecting the site where<br />
the tumor was removed from as there is likely to be residual tumor there.<br />
I will need flights and hotel. The plan is to leave Wednesday early AM and return Friday<br />
late or Saturday.<br />
Mt first surgical wound is healing well, but there is some edema around my ear and<br />
swelling of the incision. Little serious pain and I am off all pain meds.<br />
I must give great credit to my son, Gary who researched out the disease and made the<br />
initial contact <strong>with</strong> the MCC group and got me connected <strong>with</strong> Dr Ngheim.<br />
Without his help, I would still be nervously awaiting a major surgery followed by<br />
chemotherapy, all delaying the most useful treatment, radiation therapy.<br />
<strong>My</strong> <strong>Battle</strong> <strong>with</strong> <strong>Merkel</strong> <strong>Cell</strong> <strong>Cancer</strong><br />
13