I'm a long time lurker, first time poster. I've been gathering advice from this web site for several years and never really felt like I had much to offer in return. Then I got to thinking the other day that it might be time to share my husband's story.
My husband was initially diagnosed with stage IV of the base of the tongue. He did 7 weeks of radiation with 3 rounds of cisplatin. Then he underwent a selctive dissection on the right side of his neck and a radical dissection on the left. Things looked great and we thought we were done with this. Following his surgery, John was getting PT to help him with the neck and shoulder issues. The therapist was doing some massage to the area and felt a small nodule that hadn't been there a week earlier. The therapist called John's surgeon and he was seen the next day. To say that his PET scan came back "lit up like a Christmas tree" might be something of an understatement. We were absolutely crushed. This was only three months after he had completed his initial therapy.
The ENT said he was probably looking at 6-12 months. He added that "it's extremely rare that anyone can get out as far as 2 years with this level of disease."
The next stop was to see John's medical oncologist. Bless her heart. She sat there and talked to us about having no hope, false hope and hope. The discussion should have been taped. It was that good.
And so John entered the world of clinical trials.
Plan B. Gefitinib. Did nothing.
Plan C. Lapatinib. This slowed the progression for about 6 months.
Plan D. This was carboplatin, paclitaxel and G3139. The WOW factor here was high. The tumor on John's neck was the size of my fist when he started this. It rapidly vaporized down to nothing. The tumors in his lungs disappeared. This lasted for about nine months before things started progressing again.
Plan E. Capecitabine and gemcitabine. This held the neck disease stable but a lymph node near his sternum went from 8 mm to 12 mm -- about the size of a pencil eraser. Not much but enough to kick him off of this.
Plan F. Cetuximab. (The first non-trial treatment since his recurrence was diagnosed.) This has also been keeping the neck stable but there was still some progression with the chest lymph node.
So now we are at Plan F, version 2.0. He is still doing the
Erbitux but he's now in the middle of a short course of radiation to that pesky chest node. His MO thinks she can still get a little bit more mileage out of the
Erbitux when the radiation is done. Then she'll move on to something else.
What does the future hold? Well, the outlook hasn't changed. Things are still slowly progressing and all of this is palliative. But John has done really well. He was just out salmon fishing on Lake Michigan last week. And this month marks the 26th month since his recurrence was diagnosed.
The last two years have been rather challenging but I wouldn't trade them for the world. If you find yourself facing a recurrence, don't give up. You just don't know what might happen.
A friend from Zurich told us that there is a saying in Switzerland: "If you cannot move the mountain then you must climb it."
I can't say it much better than that.
DEJ
