Any Nasopharyngeal Cancer survivors? If so, what kind of treatments did you get?

I had stage III NCP wen I was diagnosed in 2012.  I had 6 chemo's over a 4 month period, but also had 35 radiation treatments. From your post, I'm assuming the cancer came back in her nasopharnyx??  Are the cysts caused by the immunotherapy drug?  When did she start the immunotherapy?  I know there are adjustments they can make in the dosages to help keep the body from kicking in too much to fight the cancer.  There aren't many of us who have used the immotherapy treatments. 

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I am a NPC survivor (4 years post treatment). I was T2N2 (stage III), treated with concurrent radiation (35 fractions 70 Greys) and cisplatin (2 rounds, day 1 and day 22, with a 3^rd not administered due to toxicity). After 1 month “vacation” I had adjuvant carboplatin and 5FU, for 3 months.

Firstly it’s not clear to me why they didn’t use radiation, which is standard of treatment. When she was treated, did she already have cancer spread to her liver & pelvic? If yes, maybe that’s the reason. If not (i.e. loco regional, spread to head and neck) it should have been included.

Secondly, about the cysts – what kind, what are these? Are these metastasis to the liver, or something entirely different? I am puzzled because you mentioned some were drained, and another ruptured, so must have contained some fluid. If that’s the case, the internal cystic component may represent hemorrhage and necrosis as the tumor outgrows its hepatic blood supply.

The fluid in her lungs is concerning, did they analyze the pleural effusion (cytodiagnosis)? Is it carcinomatous, or caused by compression, etc.

It all comes to what the last CT assessment showed: if any regression or reduced sizes of the mets, or the other way around. Immunotherapy appears to be the best option at this time. I didn’t have immunotherapy, but others on this forum had, they might chime in and give some advices

shortie81 said:

the primary location of the

the primary location of the cancer is in her nasal. It didn't spread until her second round of chemo. That is also when the cysts on her liver showed up. The cysts are of various sizes and are not cancerous. since the ruptured of her cyst, the doctor is planning to take her off of immunotherapy because while they tried to operate on her cysts through her artery, the doctors had a difficult time.  the artery walls were so fragile that they couldn't complete the operation. They are not quite sure what caused the artery wall to be so thin, therefor, surgery is not an option. The doctors are not sure what is causing the cysts to flare up too. We are looking for a second & third opinion. She lives in San Diego & we have looked into proton therapy for her cancer. We are also looking into what other options we have in regards to her liver. her liver is performing fine, we just have to find a way to keep the cysts from filling up & rupturing again because this may kill her before the cancer will. 

OK, so the hepatic cysts are not cancerous, and I am assuming they are not parasitic (Echinococcus) either. Being so numerous, might be Polycystic liver disease, discovered during the CT scan (or have they increased in size/number between successive CT scans?). I am just trying to understand what exactly is.

About the fluid in her lungs, did they say what causes it?

shortie81 said:

She doesn't have polycystic

She doesn't have polycystic liver disease & it's not caused by a parasite. As of now, the doctors doesn't have a clue what's the cause of the conditions. The same goes for the fluid in her lungs

It’s tough, not even knowing what you are up against.

Could you look for a second opinion? A clear diagnosis is really needed.

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i was diagnosed with stage iv NPC i had 37 rounds of radiation and 3 doses of chemo(Cisplatin), that was 3 1/2 years ago. the treatment was severe but i survived.Your sister will be ok

Mordger25 said:

my NPC story

It all started with a mild to severe headache. It seemed this headache went along with me constantly. I have made an order of some over-the-counter painkillers from Landa Pharmacy. The effect was temporary, the pain came back again.

When I had no patience to endure this pain I addressed Emergency Department. A sinus infection was my diagnosis. The pain disappeared for some time but came back twice stronger. The emergency department became a “relief home” for me. My pain followed me 24 hours a day.

My latest visit to the Emergency Department was made when my face was swollen and the pain was unbearable. I was admitted to MTI. The seen on computed tomography was astonishing – an orange-sized brain tumor. The next day, I have got the evidence I have cancer.

It was a nasopharyngeal tumor. Shock is nothing to explain what I felt at that moment.

I was admitted to the department to conduct certain procedures to relieve pain. My appointment lasted for a month. The main aim of the hospital staff was to reduce pain taking it under control. When my state was stabilized I started chemotherapy course. It was Valentine’s Day.  I had one treatment every three weeks. When chemo was over, i started 37 days of radiation.

I have fight for my life with a vengeance as I have a son required my help constantly.

The summer of 2014 was characterized as the end of the treatment. I was anxious about getting the results of MTI. How much I was astonished when the doctor was not found any signs of the tumor.

It was a huge relief. I couldn’t even believe it.

For taking tumor under control I have undergone MTI screenings twice a month.

So the best advice - you should definetely go to doctor and do not waste your time. 

 

I am thankful for you that you got through the ordeal. I am sure it was very difficult but it also sounds like you had an amazing medical team on your side-god Bless