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HELP Husband's Recent PET Scan Results

KarenNYC
Posts: 11
Joined: May 2013

My husband finished his treatments mid august, we found from the PET scan that basically it did nothing he had 6 weeks of eurbitux and 5 gammaknifes.  The tumor has not gotten bigger but it didn't shrink either still the same.   Also, the cancer showed up now in two of the lymph nodes what does this mean.  Can they treat this or not I'm very worried I get little sleep financially we are just holding on but for not much longer.  He has lost alot of weight, he has no trouble swollowing but he just doesn't have an appetitie.  He will be getting more treatment soon.  Someone told once it get's into the lymph nodes they can't control it is that true.

 

Thank you all

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

Sorry to hear that your husband's initial tx wasn't as successful as you had hoped. First, let me put some of your fears at ease by saying many on this forum had positive lymph nodes. I would guess more yes than no. Where is your husband's primary? Did he have surgery? Is that an option? Is he being treated at a major cancer center? What is their next course of action? Are they planning to surgically remove those lymph nodes?

KarenNYC
Posts: 11
Joined: May 2013

I'm not sure if they are going to remove the lymph nodes.  He has recurrent nasopharengyl carcinoma and the two lymph nodes are one in celiac axis and one in the vena cava.  We are seeing the oncologist next week we haven't seen him since the scan our MD went over it with us and really scared us.

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

This is only a guess, but I think most of the people on this forum have had lymph node involvement related to the original tumor. That's how I found out that I even had cancer was because of the lymph nodes. It is plenty treatable, even with the nodes. How many radiation sessions did he have?

 

God Bless,

 

Jamie

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

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 Smile.  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's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

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

 

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Pat,

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

 

God Bless,

Jamie

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

Isn't gamma knife a form of radiation?

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

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's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

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

 

 

best,

 

Pat

 

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

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's picture
phrannie51
Posts: 3598
Joined: Mar 2012

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....

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

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).

baileybell
Posts: 7
Joined: Sep 2011

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

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

as what's been injected here will cause nothing but confusion.  I will PM you, because there is no benefit in continuing this thread that I can see.

 

best to all of you

 

 

Pat

KarenNYC
Posts: 11
Joined: May 2013

I know my husband will be getting platium this time an infusion with something else I think they will do more radiation but not sure if it will be radiothreapy/gammaknife here is a link to the radiotherapy he had done http://southnassau.org/radiosurgery/perfexion.html this is also the hospital we have been going too.   First time he was treated back in 2009 the treatment went well and the tumor shrunk and was no longer there.  Should he be tested for the EBV I'm not sure that he has been. 

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