Nasopharyngeal squamous cell carcinoma metastatic recurrent with mets on bone and liver

psychedoutca
psychedoutca Member Posts: 16
in Head and Neck Cancer #1

I have so many thoughts and feelings at this point. My husband was diagnosed in 2015 and completed the chemo and radiation with great results and was in remission for about a year and a half. In December he had a PET and they found mets on his hip. He did the chemo with marginal success and had a reaction to one of the chemo so they stoped it, and put him on immunotherapy. Last week we were called as they did a CT because his neck looked fuller but they found nothing in the neck, what they did find were 12 mets on his liver. he is going to start a new trial next week. He feels great, no symptoms etc. yet we were also discussing palliative care and it finally hit me that this monster is going to take him. We have four children who are still school age. I am devastated. The doctors are not discussing time left, my husband does not want to know but I am scared. I want to hope, but am also realistic. I guess I am asking if anyone out there with NPC recurrent were able have more time than just mere months to live. I feel like I am trying to live in the moment and grieve at the same Time. 

Comments

  • Mom68
    Mom68 Member Posts: 108 Member
    #2
    Bless You

    I'm so sorry. I don't have the same type of cancer, but please know I'm thinking of you and praying for you. God Bless...Mary

  • donfoo
    donfoo Member Posts: 1,771 Member
    #3
    care or treatment

    I'm so very sorry to hear about the metastisis. You are probably in shock but try your best to focus on learning and asking as much as you can about palliative treatment. There many be options to enable reasonable quality of life for extended periods. Sadly, once it spreads beyond locoregional it is difficult to stop.

  • Laralyn
    Laralyn Member Posts: 532
    edited June 2017 #4
    Please check into clinical trials

    My Stage IV head and neck cancer returned in the lung, and then returned again after that was treated. Despite it being incurable, I'm currently feeling fine and cancer-free on a clinical trial. Your local treatment center can only tell you about trials they can provide there--you have to look elsewhere and do research to discover other options. This organization can help you find clinical trials that could help your husband: The American Cancer Society Clinical Trial Matching Service.

  • Engelsa
    Engelsa Member Posts: 50
    edited June 2017 #5
    Thank you

    Laralyn

    Thank you for fighting. Thank you for sharing with all of us. This information is encouraging and your tenacity is infectious.

    I wish you the very best.

    Sara

  • psychedoutca
    psychedoutca Member Posts: 16
    #6
    Laralyn said:

    Please check into clinical trials

    My Stage IV head and neck cancer returned in the lung, and then returned again after that was treated. Despite it being incurable, I'm currently feeling fine and cancer-free on a clinical trial. Your local treatment center can only tell you about trials they can provide there--you have to look elsewhere and do research to discover other options. This organization can help you find clinical trials that could help your husband: The American Cancer Society Clinical Trial Matching Service.

    Clinical Trials

    We start a new one tomorrow. Thank you for the advice, I poured over clinical trials and know that we are giving it our best shot with this new one. We are anxious to begin the work, He starts that trial in two weeks and I hope he meets all the requirements, he should so now we just wait on that one. At this point we are willing to find the right fit for anything that will help Whether it be in CA or anywhere in the US. Let's pray that this trial buys him some serious time. We're going to fight until he can't or he says enough. 

  • Bobby_Lee
    Bobby_Lee Member Posts: 25
    edited June 2017 #7
    Prayers for you and family.
     

    Prayers for you and family.

     

  • psychedoutca
    psychedoutca Member Posts: 16
    #8
    Scar tissue

    Hello everyone, as we begin the new trial Monday after jumping through several hoops to make it in,my husband has been noticing his neck is swollen again, I know that prior they were thinking there was a lot of scar tissue but I was wondering if anyone had experienced a significant amount of scar tissue continuing to form two years post completion of radiation? Laralyn, I was also wondering how long has the palliative chemo been able to keep it at bay for you? I have been doing some more reading on palliative care and continue to hope through all of your wonderful stories here. We are very excited to put up a fight, and I am anxious to see how this trial can also assist My husband and hopefully break through for others. 

  • caregiver wife
    caregiver wife Member Posts: 234
    #9
    palliative chemo

    Husband had major recurrence of primary with mets to lung.  His tumor wrapped around his carotid artery and erupted through his jaw, necrotic, with multiple bleeding episodes.

    After emergency surgery to block 5 branches of his carotid, two bouts of sepsis, doctor put him on palliative chemo, to be "continued as long as effective".

    As of 6 weeks ago, he is in remission.  We are "elderly", but he walks 2 to 5 miles every day.  Tonight he went to the local car races with the neighbor.  Came home and we made homemade custard, his current favorite.  He helps mow the lawn.  Cooks, does dishes, puts away his own laundry.  I make him carry a cell phone just so I can find him!

    He is to have CAT scan in about 10 days.  IF cancer returns, there are still options for additional treatment.

    There are real success stories. Real hope.  Wishing your family the very best,

    Crystal

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