Hello to all,

I've spent sometime reading some posts before actually deciding to post myself and this forum seems like an extremely resourceful and positive place.

I am looking for any type of information anyone would be interested in sharing and would be ever so grateful.

My father who is 71 was diagnosed in December 2013 with Stage IV base of the tongue squamouse cell carcinoma. At that time they also discovered two spots on nodes in his chest. They were extremely concerend with the agressiveness and size of his tumor on the tongue so the happenings in his chest were secondary. He moved forward with treatment and received 7 weeks - 35 sessions of radiation in additions to chemotherapy. Mid-way through treatment his doctors were impressed with how everything was going. He had his last radiation session on February 28th, last week at a follow with his ENT he suspected the tumor was still present. An MRI confirmed the worst. Treatment was unsuccesful. Because of the size of his tumor and the location they are recommending a full glossectomy with laryngectomy or maintenance chemo until this terrible disease takes his life. We are obviously quite devastated as we were hopeful his treatment would be successful. Sadly this has taken his spirit as well. It is so incredibly hard to watch him go through all of this. Oddly enough, whatever was going on in his chest was resolved from the chemo. They believed the primary source was his lungs, by they kept coming back clear.

We are taking him for a second opinion because at this point we feel we have nothing to lose though his current doctor told us that if anyone told us other than what they did we were being given false hope. Was so heartbreaking to hear.

We are in Philadelphia. My father was treated at Thomas Jefferson Hospital. We are looking into U Penn, we have heard great things about a physician there that does transoral laser surgery and are curious to see if he is a candidate. Being in Pennsylvania we are close to New York and also have Sloane Kettering on the table.

I would love to hear from anyone of you who are willing to share your story with me. Specifically anyone who was not successful with treatment the first time around, anyone who has had this surgery - what is your current QOL like, anyone on who is maintenance chemo and having success.

We are at a loss and right now I just want my father to have the very best care that will provide him with the best QOL at this point.

Thank you to all for taking time out to read this and TIA to any replies.

-Danielle

Hi Danielle,

I'm sorry to hear about your dad, but it may not be quite as grim as you think.

A link to my intro is in my sig, and if you or he have any questions, feel free to PM me.

I've had 4 instances of outbreaks of distant metastases in my liver, and one in a lymph node midway between the bottom of the liver and the stomach. Each outbreak has been treated differently, with one exception which I will explain:

1st recurrence: Treated with cocktail of Carboplatin and Taxol/Taxetere. Got all tumors
2nd recurrence: Treated with Xeloda (pill form of 5FU). Got all tumors.
3rd recurrence: Treated with Xeloda. Xeloda did not work this time, all tumors had grown significantly, plus there was a new crop on hand (the 4th recurrence.)
4th recurrence: Both lobes of the liver were packed full of SIRIspheres. Got all tumors of both sets.
5th recurrence: The lone lymph node (cue William Tell Overture) Treated with 3 weeks (14 times on the table) - Just completed a week ago Monday so won't know for sure until next month, but every reason to believe that the radiation took care of the node. Stay tuned.

I hope this helps,

Bart

Both are fine Hospitals, University of Penn, and MSKCC. In NYC there are also a number of other top Head and Neck Cancer Centers like Mt. Sinai, Beth Israel, NYU, Lenox Hill Hospital, NY Presbyterian to name a few, plus a Proton Center in Somerset, NJ that some are affiliated with. I know a few of these have transoral laser microsurgery, and robotic surgery. There is American Cancer Society's Hope Lodge, on 32nd Street, which is free for cancer patients, and a caretaker, during cancer treatment, follow-ups, testing, and stayed there myself for 6 weeks, instead of a hotel for $350 a night, minimum, and rate them even better than most hotels.

Btw, I had 7 recurrences having radiation 5 times to the same area, with three different types of radiation modalities, IMRT twice, HD-IORT twice, and just completed Proton Therapy, including 5 neck dissections, flap, carotid removal, on the same side too, and three different cancer treatments, either at Mt. Sinai, Beth Israel, a local radiation center, oncologist, and ProCure Proton Therapy Center in NJ, where I've seen patients in their 80's, and I have no major complaints myself. Actually, my oncologist's office wasn't too young either, and I was probably the youngest during my scheduled time, so it possible anything can be done.

I hope this helps, and wish the best.

Hello Danielle,sorry you have to be here.
My husband had his Total Glossectomy and total laryngectomy 2 years ago. He is doing well.
I have sent you a PM. There should be a blinking envelope at the top of this page next to " My Stuff ". Clicks on it and messages to read.
Thinking of you,
Tammy

Danielle, welcome to OCF. You have come to the right place for info and support to help your father.

Here is some info about second opinions and some other info that may help. Also there is a list of comprehensive cancer centers (CCC). Those are the countries top hospitals to treat cancer. They use a team based approach where all the specialists get together so everyone is on the same page.


Diagnosing and Second Opinions

CCC list

Best wishes!