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

I am researching about this cancer because my dear sister was diagnosed with stage 4 around Thanksgiving of 2015. The tumor is the size of a baseball. She immediately started chemo and did 6 rounds. The chemo was not effective at all. The cancer spread to her liver & pelvic. She is currently getting immunotherapy and there's little progress. The tumor is contained but her liver is what's causing her the most problems right now. She has cysts all over her liver, 30+ cysts, thus causing her to look like she's 4 months pregnant. The doctor drained 5 of the largest cysts early December 2016. Just this past Friday, January 27th, one of her cysts ruptured and she was rushed to the hospital. It was a life and death situation, luckily she pulled through. She also has fluid in her lungs that has to be drained out periodically. This is the first time any of us has dealt with cancer. She's only 36 and have so much more to live for. Any advices or help would be greatly appreciated.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited January 2017 #2
    Wow....I'm so sorry....

    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. 

    p  

  • letumwork
    letumwork Member Posts: 23
    NPC survivor

    I had stage 3 NPC that was diagnosed in February of 2013. A tumor the size of a walnut in the Nasopharynx and 2 lymph nodes in the neck. 3 treatments of Cisplatin concurrent with 35 radiation treatments and then 3 more treatments of Cisplatin with 5FU. So far the treatment is successful with no recurrances but a few side effects. Have you or your sister consulted or gotten any additional opinions about treatment from any of the top Cancer centers? Sounds like your sister has a complicated case. As far as immunotherapy is concerned, I do know that my father was diagnosed with stage 4 Melanoma with metastisis all over his body including his liver, small intestine, lung, jaw and numerous other locations. The doctors told him to get his affairs in order. They started him on Keytruda treatments every 3 weeks and after 3 full treatments his last PET scan was NED. Keytruda is a type of immunotherapy treatment that is kicking some major league butt for many people but is only approved for certain situations. You may want to look into it if it's an option or maybe there are some clinical trials worth pursuing. I hope your sister gets the treatment she needs and has success. Never give up hope as these pesky cancers can be treated and in many cases cured. At the very least they can be slowed down until the next great treatment comes along.

  • corleone
    corleone Member Posts: 312 Member
    NPC survivor

    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 3rd 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
    shortie81 Member Posts: 11
    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. 

  • corleone
    corleone Member Posts: 312 Member
    edited February 2017 #6
    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

    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
    shortie81 Member Posts: 11
    corleone said:

    OK, so the hepatic cysts are

    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?

    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

  • corleone
    corleone Member Posts: 312 Member
    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

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

     

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

  • shortie81
    shortie81 Member Posts: 11
    edited March 2017 #9
    Disappointing news

    sUpdate: My cousin just got back from MD Anderson after staying there for a week & the news were very disappointing. They pretty much told her the same thing UCSD told her. She's currently on Immunotherapy and so far it seems to help but very little progress at the moment. Proton therapy is also out of the picture for her. So now, we're back to square one and are out of options. Since this is common in China & among Asians, I wonder if it's best to seek oversea treatment? We are Asians so I would think that there would more available resources in China. Although this is not an option for her as well since it'll be costly & she has 4 kids as well as the breadwinner. I'm just so scared of losing her because if one of her cyst bursts again, she may not survive.

  • nsprin
    nsprin Member Posts: 1
    I diagnosed with Prostate Cancer -I am not able to afford meds

    Hi Everyone, I am Nathan from California. Diagnosed with prostate cancer.

    I was very depressed after diagnosing Prostate cancer. My family was very supportive after diagnosing of prostate cancer. But it was very difficult to afford medication. The medication, I was using is more expensive and I was not able to afford it. After 3-4 visits to my doctor's clinic, I ask the doctor - Can I survive, as I have no money for treatment. 

     

    They replied very clearly, I will support you. and after that, they wrote the generic medication and suggest me to fill my medication from Offshore Cheap Meds

    I was hopeless and hesitated during those days. But I focused on the advice. And send a request to fill my prescription from this site.

     

    Now I can afford medication. I am thankful to my doctor and the store. 

    I suggest all the cancer patient and their family, please consult your doctor and ask for some alternative to your high-cost medication. 

    It will help you and support you.

  • wbcgaruss
    wbcgaruss Member Posts: 2,445 Member
    nsprin said:

    I diagnosed with Prostate Cancer -I am not able to afford meds

    Hi Everyone, I am Nathan from California. Diagnosed with prostate cancer.

    I was very depressed after diagnosing Prostate cancer. My family was very supportive after diagnosing of prostate cancer. But it was very difficult to afford medication. The medication, I was using is more expensive and I was not able to afford it. After 3-4 visits to my doctor's clinic, I ask the doctor - Can I survive, as I have no money for treatment. 

     

    They replied very clearly, I will support you. and after that, they wrote the generic medication and suggest me to fill my medication from Offshore Cheap Meds

    I was hopeless and hesitated during those days. But I focused on the advice. And send a request to fill my prescription from this site.

     

    Now I can afford medication. I am thankful to my doctor and the store. 

    I suggest all the cancer patient and their family, please consult your doctor and ask for some alternative to your high-cost medication. 

    It will help you and support you.

    nathansprin cheap Meds

    Just to let you know you are on the "head and neck forum" not the "prostate forum" and there is a forum for prostate patients. But if legitimate the cheap meds you mention may be a real help for some folks.

  • aliaphilo
    aliaphilo Member Posts: 2
    NPC

    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
    Mordger25 Member Posts: 1
    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. 

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,445 Member
    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. 

     

    What a story

    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

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    Treatment update

    I was diagnosed with Nasopharyngeal Cancer at the beginning of 2019 - after getting a growth removed from one side of my neck. They hadn't seen anything in any other scans, so they thought it would be benign. But, the Doctor found NPC in my left nasal passage, after doing exploratory surgery on my tonsils, tongue and nose etc.

    (I was lucky, that there was nothing "below the collarbones", in any of my scans.)

    I will be starting my 6th week of radiation (7 total), today. So far, the radiation hasn't been as bad as they described. I haven't so much as taken an aspirin, for pain yet. (But, of course, everyone reacts differently - and I may also hit a point where the symptoms get much worse)!

    I am also getting 3 sessions of Cisplatin, then 3 more (after radiation) of Cisplatin plus the Flouro stuff. The chemo has caused constipation, so one has to stay on top of that.

    It's challenging treatment, for sure. Make sure to surround yourself with a great support team, like I have - and remember, this will give you more time to spend, doing the things you love (like Grandkids, or motorcycles, or snow skiing, or whatever YOUR things are)!! Tell the people you love, that you love them ... every day!!