New here .... introduction - 05-07-2006 10:35 AM
Hello to all! I'm new to this list, having been referred here by someone on *another* online group I recently joined, in my never-ending quest for information (something I gather everyone here understands) 
My name is Kristie, and I am the wife to Blaine (the patient). I'm not sure, to be honest, if I should be posting this in "Introduce Yourself" or "Treatment Questions" or "Caregivers" so perhaps I'll just start here.
Blaine was dx three years ago with a
PLGA, completely filling his right sinus cavity,
extending up to the eye and down through the
palate. No one ever mentioned "stages" to us, so I don't know if that's relevant. He underwent a hemi-maxillectomy to remove the tumor and lost his soft palate, hard palate, cheekbone, and upper teeth on the right side. At the time, the surgeons were confident they got everything, so no chemo or radiation was done and he began a long, slow reconstructive process.
He wore an obturator for quite a while (hated it!) then when he had been cancer free for two years, had a free flap procedure with removal of the fibula, done at UMCW-Seattle, which was only moderately successful, as the graft shrank quite a bit and he wound up with another opening in the palate. Recently, he was in the process of getting implants for teeth, and in the planning stage for another free flap procedure to fix the current defect.
Anyway, blah blah blah. He began complaining of
facial pain and a "lump" in his cheek about six
months ago; a PET scan revealed the cancer had
returned (or more probably, a few errant cells they didn't get the first time had regrown) into two diffused tumors, one in the cheek and one next to his carotid artery.
So, on Monday of last week he flew back to Seattle (he is active-duty Air Force and we are currently stationed in Georgia) to begin neutron beam radiation therapy. He will undergo the first two and a half weeks by himself, then I will fly there to help him and we have family flying here to watch our three kids.
Primarily, at this time I am looking for advice or wisdom from anyone who has undergone neutron beam radiation. I have gotten excellent information from persons who have undergone x-ray radiation, but I am not sure how the treatments and side effects of the two correlate. I suppose that might be a question better put to the "Treatment" forum.
Also, his doctors have mentioned a feeding tube as a possibility .... is that something that can go in later, or should it have been done prior to starting radiation? He has had them for surgeries in the past and hates them, so I know he would prefer to avoid it .... but my bigger concern is that he would need it and not have it. Can they put one in at anytime?
Well, I have dozens more questions, but I'll end there. I don't want to bore everyone to tears with my very first post!
Thanks for reading, and I look forward to getting to know you,
Kristie
My name is Kristie, and I am the wife to Blaine (the patient). I'm not sure, to be honest, if I should be posting this in "Introduce Yourself" or "Treatment Questions" or "Caregivers" so perhaps I'll just start here.
Blaine was dx three years ago with a
PLGA, completely filling his right sinus cavity,
extending up to the eye and down through the
palate. No one ever mentioned "stages" to us, so I don't know if that's relevant. He underwent a hemi-maxillectomy to remove the tumor and lost his soft palate, hard palate, cheekbone, and upper teeth on the right side. At the time, the surgeons were confident they got everything, so no chemo or radiation was done and he began a long, slow reconstructive process.
He wore an obturator for quite a while (hated it!) then when he had been cancer free for two years, had a free flap procedure with removal of the fibula, done at UMCW-Seattle, which was only moderately successful, as the graft shrank quite a bit and he wound up with another opening in the palate. Recently, he was in the process of getting implants for teeth, and in the planning stage for another free flap procedure to fix the current defect.
Anyway, blah blah blah. He began complaining of
facial pain and a "lump" in his cheek about six
months ago; a PET scan revealed the cancer had
returned (or more probably, a few errant cells they didn't get the first time had regrown) into two diffused tumors, one in the cheek and one next to his carotid artery.
So, on Monday of last week he flew back to Seattle (he is active-duty Air Force and we are currently stationed in Georgia) to begin neutron beam radiation therapy. He will undergo the first two and a half weeks by himself, then I will fly there to help him and we have family flying here to watch our three kids.
Primarily, at this time I am looking for advice or wisdom from anyone who has undergone neutron beam radiation. I have gotten excellent information from persons who have undergone x-ray radiation, but I am not sure how the treatments and side effects of the two correlate. I suppose that might be a question better put to the "Treatment" forum.
Also, his doctors have mentioned a feeding tube as a possibility .... is that something that can go in later, or should it have been done prior to starting radiation? He has had them for surgeries in the past and hates them, so I know he would prefer to avoid it .... but my bigger concern is that he would need it and not have it. Can they put one in at anytime?
Well, I have dozens more questions, but I'll end there. I don't want to bore everyone to tears with my very first post!
Thanks for reading, and I look forward to getting to know you,
Kristie