HELP Husband's Recent PET Scan Results

did he get rads along with the gamma-knife and eurbitux? 

It's a good thing that cancer in the lymph nodes IS treatable, or most of us wouldn't be here talking to you .  Many, if not most of us found our cancer due to lymph node involvement....the old "bump in the neck" sent us scurrying to the Dr.   One thing is if he didn't have radiation, he can have that with none of the "do-over" problems that come with the second time around.....and if he has chemo again, there is still Cisplatin....

Tell hubby that eating isn't for fun anymore.....eating is his job....appetite or no appetite, he has to get the calories in that he body needs to fight and to survive.  Pouring a smoothie or an Ensure down his gullet he can equate to hauling himself out of bed at 6:00 to go to a job he doesn't like, but needs to do to keep a roof over his head.....not being mean, but no appetite isn't a good reason to not eat.

p

longtermsurvivor said:

Hi Karen

His disease is quite different than what most of us on the board have.  Most of us have squamous cell carcinoma.  NPC is actually rare in the US, much more common in SE Asia.  Occasionally we have people here with this disease, a few from the US, and then some from China.  The treatments are somewhat the same, but NPC has a nasty habit of doing exactly what you are reporting, including these nodes that are quite distant from the oiginal site.  You husband's disease will need treated by someone with a major rreferral based practice.  Smaller practices in the US simply won't see enough of this to do the job at this point.  So a referrral may be in order. 

If I were you, and I trusted the people who have done the treatment so far, I'd see what they had to say.  I say this because you don't need to reinvent the wheel if they are going to be your advocates.  Even if that advocacy means they have to send him to MD Anderson, or Mayo Clinic, or some other major referrral center.  There are treatment programs for metastatic NPC, but they aren't available everywhere, and you are going to need some help.   Here is the NCI webpage that lists currrent Clinical Trials for recurrent NPC.  Take this one day at a time.  You simply have to or its completely overrwhelming.  Here's the website:

 

http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=6606576&vers=1

 

best to you

 

Pat

 

Pat,

Thanks for clearing that up. I didn't even notice that it wasn't a SCC patient.

God Bless,

Jamie

Just to clarify something: Nasopharyngeal carcinoma (NPC) IS a squamous cell carcinoma. It is rare, but even rarer in my case: I am Caucasian and I don’t smoke, drink, or eat salty fish or pickled food. It is Epstein Barr positive though. Right now I am in remission, but the most common sites of metastases are bone, lung, liver, and superior mediastinal and hilar lymph nodes. There are various treatment modalities, more or less effective; beyond conventional chemotherapy, molecularly targeted therapy and Epstein–Barr virus (EBV)-based immunotherapy approaches can also be tried.

longtermsurvivor said:

well, not really

although the distinction serves mostly to confuse.  Here's a reference:  http://www.ncbi.nlm.nih.gov/pubmed/7778675

 

 

best,

 

Pat

 

Type 3 or undifferentiated NPC constitutes the bulk of the tumors seen in patients with NPC, and it is also what I had/have. My take is that this is in fact a SCC less/un differentiated.

phrannie51 said:

I had NPC, too....

now I'm all confused.  I went to that site Pat.....and then I got scared I'd read something that would keep awake at night, so only read 3 sentences.   My ENT never said anything but "nasopharyngeal carcinoma"......no differentiated, or non-differentiated....just squamous cell....

p 

The treatment is the same, regardless of the histological type, so I don’t think knowing that would help. Usually they say: the more undifferentiated, the more aggressive, but more importantly, more sensitive to treatment. I can say that in my case, that seemed to be true, because it was extremely sensitive to cisplatin (to the point that when I felt the node in my neck shrinking by ~30-40% the next day after the first infusion – only 3 radiation sessions at that point, so that could not have been the explanation - I was scared I would experience tumor lysis syndrome. Of course, that was not the case).

phrannie51 said:

I had NPC, too....

now I'm all confused.  I went to that site Pat.....and then I got scared I'd read something that would keep awake at night, so only read 3 sentences.   My ENT never said anything but "nasopharyngeal carcinoma"......no differentiated, or non-differentiated....just squamous cell....

p 

Stay off the internet P...you know the drill:)