nasopharyngeal carcinoma stage 4B

caregiver99
caregiver99 Member Posts: 27
edited December 2011 in Head and Neck Cancer #1
Hello all, one morning my gf (31yrs old) woke up with double vision on her right eye, she lost 50% of her hearing on her right ear and she lost feeling on her right side of her face. I immediately took her to the emergency room and she was diagnosed with stage 4B NPC in early July. Her tumor was 7cm and was super aggressive so she got her Peg tube and mediport installed as soon as we could and she started her treatment within 3 weeks. She lost 16 lbs before she even started her treatments. Doctors were worried about her weight since she is very petite. Her Biopsy report came back as Nasopharyngeal carcinoma, non-keratinizing type (WHO TYPES 2 and 3). It shows prominent nuclear staining for EBV in an in situ hybridization study. Doctors said this type is very responsive to radiation and chemo. She completed 7 weeks of daily radiation treatment with Cisplatin every 3rd week plus additional 3 sessions of Cisplatin and 5FU after the radiation treatment. She fainted couple of times during 3rd week of radiation and she was hospitalized for a week because she was dehydrated. The doctors took this opportunity to do another MRI scan while she was in the hospital and it shows the tumor increased in size from 7cm to 9cm. Doctors told us not to worry about it since she only did 3 weeks of radiation. The 5th week of radiation, her double vision was gone completely and her hearing was back to normal. On her 6th week of radiation, the numbness on her face was 90% gone. On her 7th week of treatment, her eye was functioning like it used to before the cancer. She got most of her saliva and taste buds back less than a month after her radiation treatment. Its now 3 months since she completed her radiation and a week since she done with chemo. Thanks to the peg tube, she actually regained 10 lbs during the treatment. We tube fed her 4.5 cans of high protein drinks (Osmolite 1.5) per day with over 1500 calories. She now can drink water, soup and protein drinks (she prefers Orgain with less sweet) from the mouth with no problem. She just went to her dentist for a post radiation check up and no cavity found. She using her floride tray daily and brushes 4-5 times a day with dry mouth toothpaste. She scheduled to see a speech therpist next week, not sure why since she has no problem speaking but docs want her to get checked anyway. She still not able to eat solid food because she complained the food get stuck in her throat and maybe the speech therapist can help with this. Her PET scan is scheduled in 2 weeks and I am very nervous about it since she still feel a very mild numbness in her right side of her face. It has been the most scary 5 months of my life and wish nobody has to go through this.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    What a ride, huh?
    It's a roller coaster for sure. You've got to hang on real tight. Great response to treatment to say the least and very encouraging. Sounds like you have a good grasp of what is happening to both of you and are dealing well with the most scary 5 months of your life. The numbness isn't anything to worry about right now. Either is the swallowing as it seems to be improving already. Young is always a plus for fighting purposes. Welcome to the Board. What an inspirational post although I regret the malignant diagnosis of your partner/friend. Check out the Super thread to answer many of your questions and hang out with us for awhile.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Hi caregiver
    So sorry, that you find yourself in need of CSN, but glad that you found our site. There are a lot of great people here, who are very supportive, and full of great knowledge. I did not have NPC, but I had SCC stage IV.

    The speech therapist can usually help with swallowing. They may have a swallowing study done, to ascertain why she is having problems with swallowing. There are swallowing exercises that can be done, or if the issue is due to a stricture, they can go in and dilate or stretch out the esophagus. Many of us have had that done, even multiple times.

    Here is a link to the superthread. It is full of a lot of useful information, mostly in the form of links to other threads on CSN and different websites pertaining to all aspects of head and neck cancer.


    HNC  SUPERTHREAD
  • Hal61
    Hal61 Member Posts: 655
    Welcome
    Hi Caregiver, it sounds like you're already a regular here in terms of your knowledge, and you and your friend's harrowing time. As said, you been on the E ticket ride: fast to show, fast to treat, and quick response and recovery. The lingering numbness is not an indicator either way. Now you have to learn to wait, you are waiting in the "line ride" as depicted on one episode of South Park. Tough luck you didn't find this site sooner, but use it now.

    best, Hal
  • sumarah8
    sumarah8 Member Posts: 32
    NPC here
    Hi, im NPC too still on treatment, stage 2b i would have adjuvant chemo starting on Dec. 19, im done with radiation with concurrent chemo and im only 35 yrs. old, im actually eating now gained like 7 pounds, i also have very slight numbness on my right side of my face, there is a lot of NPC survivors here, so don't worry your girlfriend would be fine.
  • ac
    ac Member Posts: 88 Member
    NPC too
    Hi,

    I'm NPC too (stage 3) at 39 yrs old. I (like sumarah) am also due for my post rad chemo soon. The doctors told me too that this type of SCC (non-keratinizing) is very responsive to treatment. You sound like you both went through a lot. But it looks like you have both gone past the hump. Stay strong, it looks like things are only improving for her from here.
  • caregiver99
    caregiver99 Member Posts: 27
    ac said:

    NPC too
    Hi,

    I'm NPC too (stage 3) at 39 yrs old. I (like sumarah) am also due for my post rad chemo soon. The doctors told me too that this type of SCC (non-keratinizing) is very responsive to treatment. You sound like you both went through a lot. But it looks like you have both gone past the hump. Stay strong, it looks like things are only improving for her from here.

    Thank you all
    Thank you for all of your insightful feedback and suggestions. I was kinda shocked to find so many young NPC out there. This CSN forum has been a great place for information, I probably learned more from the posts here than from my gf's docs and nurses. Keep you the good work and good luck to all!
  • robertjuy
    robertjuy Member Posts: 45

    Thank you all
    Thank you for all of your insightful feedback and suggestions. I was kinda shocked to find so many young NPC out there. This CSN forum has been a great place for information, I probably learned more from the posts here than from my gf's docs and nurses. Keep you the good work and good luck to all!

    wife is also at stage 4
    I forgot the technical term stage. However I'm glad to hear your girl is doing so well. My wife is 38 and it's been tough. We've just finished her rad treatment and for some reason the very last one turned out to be the worse. It's like someone turned up the dial as a percaucion. I will show her your results because she's having trouble keeping up with the regiment. Thank you for your post.
  • caregiver99
    caregiver99 Member Posts: 27
    robertjuy said:

    wife is also at stage 4
    I forgot the technical term stage. However I'm glad to hear your girl is doing so well. My wife is 38 and it's been tough. We've just finished her rad treatment and for some reason the very last one turned out to be the worse. It's like someone turned up the dial as a percaucion. I will show her your results because she's having trouble keeping up with the regiment. Thank you for your post.

    hang in there
    Robert, the last 2 weeks of rad treatment was tough for my gf. Her skin was burned pretty bad, the lotion provided by the doctors helped a little. Within a month I noticed most of her burned skin disappeared and her throat was cleared of mucos. She could go out again without having to carry a tissue box. Your wife will start to feel better very soon. I had arranged my gf to see a swallowing specialist and they did some post rad swallowing test to see if anything wrong but all came out great, she just need to do couple of sessions on how to excersie her tongue so the food goes in more smoothly.
  • Hondo
    Hondo Member Posts: 6,636 Member

    Thank you all
    Thank you for all of your insightful feedback and suggestions. I was kinda shocked to find so many young NPC out there. This CSN forum has been a great place for information, I probably learned more from the posts here than from my gf's docs and nurses. Keep you the good work and good luck to all!

    Hi caregiver

    Yep there are quite a few of us here who had NPC, so far I count the number at 34 many of them left CSN only a few of us stay back to help others going through treatment.

    Wishing you both well in the future, God bless
    Hondo
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Hondo said:

    Hi caregiver

    Yep there are quite a few of us here who had NPC, so far I count the number at 34 many of them left CSN only a few of us stay back to help others going through treatment.

    Wishing you both well in the future, God bless
    Hondo

    NPC
    Also, NPC, who finished tx in 4/09, and clean ever since. Little different tx regiment with the chemo and rads. No Primary ever found. C showed with two left-side neck tumors in 11/08. NPC can be beat with great success.

    As for the "young" people with NPC, I am not 28, as I wish I was. Would you believe I'm 33? Okay, how about 57? (Unfortunately, the last age is the correct one)

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    Kent Cass said:

    NPC
    Also, NPC, who finished tx in 4/09, and clean ever since. Little different tx regiment with the chemo and rads. No Primary ever found. C showed with two left-side neck tumors in 11/08. NPC can be beat with great success.

    As for the "young" people with NPC, I am not 28, as I wish I was. Would you believe I'm 33? Okay, how about 57? (Unfortunately, the last age is the correct one)

    kcass

    Hi Kent
    Yep you are right, I am just one year behind you at 56, if us old people can do it with our old bodies then the younger ones can beat it standing on there heads. Last NPC treatment for me was 3-16-2005, that is 6 years plus, I thanks God for ever year extra he has giving me.

    Hay did I just call us Old, I am not old because I feel too young,

    Take care
    Hondo
  • par
    par Member Posts: 23
    robertjuy said:

    wife is also at stage 4
    I forgot the technical term stage. However I'm glad to hear your girl is doing so well. My wife is 38 and it's been tough. We've just finished her rad treatment and for some reason the very last one turned out to be the worse. It's like someone turned up the dial as a percaucion. I will show her your results because she's having trouble keeping up with the regiment. Thank you for your post.

    Rad burns
    I tried everything they gave me,nothing helped,and then out of desperation I tried Neosporin spray.It burned a little but in two weeks all scabing was gone.The best thing I found.
  • NeoTheron91
    NeoTheron91 Member Posts: 75
    Glad
    Hi

    Glad to know that she was alright after the treatment. Thanks for your info.

    cheers,
    Neo