Stage IV Nasopharyngeal Cancer, newly diagnosed

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  • Mandabeth82
    Mandabeth82 Member Posts: 5
    #22
    my girl said:

    Almost 1/2 way
    It has been great being able to hear your stories. I am sorry to hear about your cancer, but am grateful to have hope from others who have been through this. Like you, my daughter struggled with this for mos. before getting the news, which put her at stage 4. Doctors kept putting her on antibiotics, until finally I lost it, and they did more tests. She is now 19 treatments into her radiation and her neck is really red, but not in too much pain. She has 3 chemo treatments down and 2 left. Her final treatments will end in the middle of aug., and then we wait 6 wks. before they check to make sure she is better. Her tumor was large but said it is reacting very well to the chemo. Her tumor had traces of the EBV virus, did yours? Our doctors feel good about her treatment, but continue to remind me just how difficult this treatment is. She has a feeding tube, she can still eat, but her problem is she just isn't hungry. To make matters worse we are out of state for treatment, better treatment, but she misses her family and friends terribly (as do I). I wish you luck with your treatment, it will get better. Maybe she can help inspire you when your feeling down!

    Updated
    I am sorry to say that Terry lost his battle to NPC and Congestive Heart Failure. He was only able to get in 5 treatments before his heart couldn't handle the fluid load of the Carboplatin. To make matters worse it has spread into his liver. He went into hospice on June 10 He passed away on June 15. They really should have better standards for catching this cancer early.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #23
    my girl said:

    Almost 1/2 way
    It has been great being able to hear your stories. I am sorry to hear about your cancer, but am grateful to have hope from others who have been through this. Like you, my daughter struggled with this for mos. before getting the news, which put her at stage 4. Doctors kept putting her on antibiotics, until finally I lost it, and they did more tests. She is now 19 treatments into her radiation and her neck is really red, but not in too much pain. She has 3 chemo treatments down and 2 left. Her final treatments will end in the middle of aug., and then we wait 6 wks. before they check to make sure she is better. Her tumor was large but said it is reacting very well to the chemo. Her tumor had traces of the EBV virus, did yours? Our doctors feel good about her treatment, but continue to remind me just how difficult this treatment is. She has a feeding tube, she can still eat, but her problem is she just isn't hungry. To make matters worse we are out of state for treatment, better treatment, but she misses her family and friends terribly (as do I). I wish you luck with your treatment, it will get better. Maybe she can help inspire you when your feeling down!

    Welcome ~ mygirl
    Welcome to the forum....so sorry to read of your daughter and someone so young having to go through this. As a parent also, I know it has to be hard on you and the family as well.

    Thoughts and Prayers,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #24
    Mandabeth82 said:

    Updated
    I am sorry to say that Terry lost his battle to NPC and Congestive Heart Failure. He was only able to get in 5 treatments before his heart couldn't handle the fluid load of the Carboplatin. To make matters worse it has spread into his liver. He went into hospice on June 10 He passed away on June 15. They really should have better standards for catching this cancer early.

    WOW....
    So very sorry for your loss Mandabeth....we hear so much good here, it's really devasting to read of the few that don't make it....

    Again, I'm so sorry to read of your loss and the battle that Terry had to endure.

    God Bless,
    John
  • adventurebob
    adventurebob Member Posts: 691
    #25
    Mandabeth82 said:

    Updated
    I am sorry to say that Terry lost his battle to NPC and Congestive Heart Failure. He was only able to get in 5 treatments before his heart couldn't handle the fluid load of the Carboplatin. To make matters worse it has spread into his liver. He went into hospice on June 10 He passed away on June 15. They really should have better standards for catching this cancer early.

    Condolences
    So sorry to read this Mandabeth. Prayers and thoughts with you.

    Bob
  • kokomc
    kokomc Member Posts: 22
    #26
    ballerinazh said:

    Stage 4 NPC
    My husband was diagnosed with stage 4 NPC last September with metastasis to his rib and spine. He had 4 rounds of Chemo cocktail once every 3 weeks followed by 35 radiation with concurrent weekly chemo. As of last PET scan after the 3rd Chemo cocktail, there is no evidence of cancer. As far as I know. there are other NPC survivors on this site, adventurebob and cartierlee who were also stage 4 with distant metastasis when they were diagnosed. Bob is NED now after the treatment and it has been the 9th year for Cartier since his treatment.

    The cancer is rare in US, but quite common in southern China, and apparently is quite responsive to treatments. Statistics shows that the 5 year survival rate is quite good, 4 out of 10 even for a stage 4...Well, it's not as good as 10/10, but we should all stay positive and hope for the best.

    From your description, I do think that you should seek a second opinion if not another doctor. The journey is so much harder with a doctor who doesn't care and not trustworthy. He's seems so unprofessional with dartboard analogy, which I don't even get, but maybe it's just my English... My husband is being treated at Mass General Hospital, Oncologist here are generally quite busy and they can seem a little rushy as well, but they always make sure that all my questions are answered. This is cancer we're talking about, you have the right to have all your questions and concerns addressed. Make sure you do some research on your own, there are a whole lot of information on the internet and write down your questions prior to the appointment.

    Stay strong and good luck

    NPC
    I am just a caregiver but my husband also had this NPC cancer about 6 years ago; he went through all the treatment for it and has been doing ok except for the side effects from all the Radiation treatment. It totally changed our life forever

    Mary
  • my girl
    my girl Member Posts: 4
    #27
    Skiffin16 said:

    Welcome ~ mygirl
    Welcome to the forum....so sorry to read of your daughter and someone so young having to go through this. As a parent also, I know it has to be hard on you and the family as well.

    Thoughts and Prayers,
    John

    mandabeth
    I am so sorry to hear your news. Please know our thoughts and prayers are with you. Danielle
  • FaithLyons
    FaithLyons Member Posts: 21
    #28
    my girl said:

    mandabeth
    I am so sorry to hear your news. Please know our thoughts and prayers are with you. Danielle

    I am also sorry to hear of
    I am also sorry to hear of your loss mandabeth, also my thoughts and prayers are with U 2..

    Praying for you to mygirl..

    Love and prayers
    Faith
  • kwana3
    kwana3 Member Posts: 10
    #29
    lalilinn said:

    I'm going through almost the
    I'm going through almost the exact same situation right now but it's with my dad and it's metastatic and spread to his lungs, liver and bones. I had a horrible experience with our doctors too and I'm in the middle of finding someone else to speak to as well. I also heard a lot of great things about MD Anderson and that it's rated #1 cancer hospital in the country. Did you ever reach out to them? Hope everything goes well for you...

    HI
    3 months after my frist treatment, I did a PET scan and found out that it has metastasis to the bone. I am wondering how is your dad doing now?
  • kwana3
    kwana3 Member Posts: 10
    #30
    HI
    Mandabeth82
    How is your fiance doing now??
    I just found out that I got bone met from NPC and would like to heard more about this.
    thx
  • lodie
    lodie Member Posts: 8
    #31
    nasalpharenageal carcinoma
    i myself was diognosed with that in feb 2012.. i am currently undergoing treatments in baltimore at the university of Maryland medical center.. the doctors here are awesom eand they specialize in all sorts of cancers.. my doctor who is tha hea dof oncology is dr kevin Culle.. i suggest if you want good treatmant to come here and at least talk to him.. I had three tumours one behind my left eye, one right at the top of my spine and one on my neck.. all of it has since been terminated thru chemo and radiation... its been a tough road and i have not felt real well but i at least am alive..my ent doctor is dr Jeffrey Wolf.. you can google all this up on the internet.. best of luck

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