Dear Brian and Uptown,

Thank you for bringing this to light, though it is a tough subject to broach. I am very sorry to hear that there are people suffering from such a horrible disease, especially after battling OHANC. Brian, I am so pleased to learn the breadth of current research with which you are continually keeping pace.

Uptown, you have had such a rough go of things, but you hold up your chin and have an amazingly positive attitude. Your willingness to help others is evident in this forum. So, thank you.

It certainly makes sense that radiation scatter could affect the central nervous system and cause upper motor neuron disease. I do think that it is vitally important for any OHANC patient to report any symptoms or findings related to neurologic symptoms such as abnormal reflexes that one may see with a stroke or other post-treatment sequelae. Also, neurovascular symptoms such as those that could be linked to stroke or transient ischemic attacks to the brain.

I will keep my ear to the ground on this one and follow this thread.

Take care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!