Just wanted to introduce myself. I met Brian on another forum and he has been inviting me to come over here...I finally decided to take him up on his offer.

I am a cancer survivor myself (a rare reproductive cancer, 3 years ago) and the care giver for a laryngeal cancer survivor. My husband had stage 4 laryngeal cancer with the left vocal cord being paralyzed and the tumor invading his cricoid cartilidge and the thyroid cartilidge. He was treated at SIU Med's HANOT clinic using RADPLAT. RADPLAT uses surpatargeted intra-artrial chemotherapy (cisplatin at 5-10 times the normal dose the body can withstand, with an antitoxin administeed simultatnously) with concommitant radiation therapy. The purpose of RADPLAT is to preserve the organs while curing the cancer. In my husband's case, he is a professional speaker, so if he had lost his larynx, he would have lost his livlihood, so preservation of organs was extremely important for him.

DH has been out of treatment now for 16 months and is doing excellent. He had NO voice at all when he sought treatment. Now his voice sounds like Al Pacino's...a bit gravelly, but it is a voice! And he has been able to return to work..although it has been slow going to rebuild his consulting practice after having been out of it for three years (that is when he first started losing his voice).

I am disabled due to lupus, arthritis, and a degenertive bone disease, so I have a lot of time on my hands. One of my 'hobbies' (OK, so I'm a little weird) is reading medical journals. I susbscribe to a service that scans all the medical journals and reprints articles in whichever specialties you opt to recieve them in. They think I am a med student. LOL! One of my 'specialties' is oncology. I feel this helps me stay on top of new and developing treatments. I have two uncles who are physicians and a sister who is an RN in a critical care unit, so when I run into something that I don't quite 'get', I have professionals I can turn to to explain it to me.

I hope to find support here as well as to be able to help others.

Hi Marcie,
Welcome to the board. I too had laryngeal cancer, stage 1, and unfortunately they could not save my voice box. They had hoped to do laser surgery but tumor in the wrong spot and would not have been able to eat again. Where is SIU Med's HANOT clinic? I wonder if a radplat could have been used on me. I speak just fine but do miss the activities that are no longer available to a total laryngetcomee like swimming and singing. I am so glad your husband was able to avoid this surgery and get on with a normal life. I wish the best for both of you.

Take care,
Eileen

Welcome, Marcie. No wonder Brian wanted you here! Sounds like you and your husband are very strong people with alot to share. We are glad you are among us and will look forward to hering more from you. Amy

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...

Darn it...I just realized that I can't spell worth a darn without my spell check. Please excuse my errors. I'm actually a pretty good speller...I just type faster than I should. And it is almost impossible to proof your own work because your brain sees what you meant to sy and not what you actually said. LOL!