Hi Eileen and Amy!
Thank you so much for the warm welcome!
SIU Med's HANOT clinic is in Springfield, Illinois. RADPLAT was created by Dr. K. Thomas Robbins when he was at UT Memphis (with the help of a whole slew of other doctors, of course!) He has taken RADPLAT to MD Anderson and is now at SIU in Springfield. RADPLAT is available in about ten clinics in the US, as well as Amsterdam and Asia. Depending on which study you read, it either has a slightly lower survivorship or a slightly higher suvivorship than standard chemo. Either way, in my opinion it equals out because the statistics are only about 3 percentage points in either direction. (Information based on multiple studies)Right now they are running a study using the RADPLAT protocol in conjunctin with systemic
Erbitux to kill any microscopic cells that might normally be missed by the Intra-arterial sysplatin treatment. I think it will be the perfect treatment...but that is my opinion...and we all know about opinions, don't we???
The one thing RADPLAT has going for it is the preservation of organs. As I mentioned before, David is a professional speaker, so keeping his voice was very high prority. Without it, he would have a very difficult time earning a living. He tried to earn a living writing for three years prior to treatment, when he thought his vocal problems were allergy related...and he barely earned enough to keep us above the poverty level.
There has been a bit of a toll on his voice, though. He used to have a voce that was smooth as butter. He could have done professional voice overs. Now it is a bit gravelly (as I mentioned, he sounds like Al Pacino in the Devil's Advocate these days.) He can't sing anymore, which bums me out because he used to have a GREAT voice. Not a lot of range, but still, it was enough to send goosebumps down your spine. Now he can't tease me about what a lousy singer I am anymore because he can't sing any better than I can. LOL! But we will both take the loss of his singing voice ANY day compared to what could have been.
The HANOT clinic at SIU is actively invovled in many studies at any given time. When Dvid was in treatment, they were doing lymph node biopsies in early stage cancers to determine at what point the cancer invades the lymph glands in head and neck cnacers whre the lymph glands are not atively seen as beign invovled (in other words, they rmvoed a couple of lymph glands and did microscopic examinatiosn to see if they could find any cancer cells, even though there were no signs of active disease in the lymph nodes).
One thing I really loved about this gropup is that they really take the team approch seriously. Every week David and I met with the ENTIRE team...including resdients and med students that followed each doctor around, nurses, nutritionists, and a speech therapist. There were days when there were so many people in the exam room, that some of the residents and med students had to stand out in the hall! I've talked to a lot of patients whose doctors didn't seem to talk to each other, which resulted in a lot of miscommunication and misunderstnadings. I also loved that I had 24 hour ohone numbrs of people I cold call at anytime to ask a question, express a fear, or just have a pnaic attack. Also, the docs didn't just treat my husband. WHen they knew we were stressed out waiting for a test result etc, they prescribed anxiety meds for BOTH of us. And the rad nurse also had a dual degree in counseling, so when he was in treatment, I could cry on the nurse's shoulder...and did quite often!
Well, I guess I said a lot more than I meant to say in that post. LOL! Oh well...